Home Page Search Final Report Interim Report Evidence - Transcripts - Witness Statements - Submissions - CCNR Report and associated documents - Statistical Reports and associated documents - Background Papers - Expert Papers Inquiry Seminars About the Inquiry Help		Daily transcripts   Hearing summary 23rd MARCH 1999   Mrs Linda Burton gave oral evidence to the Inquiry today about the events following the birth of her son David at Musgrove Park Hospital, Taunton in January 1990. David was born with Down’s Syndrome. It was confirmed that David had AVSD and that he would need an operation in Bristol. Cardiac Catheterisation at Bristol Children’s Hospital in September 1990 indicated that surgery was possible and Mr Wisheart agreed to carry out open-heart surgery. The operation took place at the BRI in February 1991. Following complications after surgery David died a week later. Mrs Burton said she was surprised to hear that Mr Wisheart was being investigated and had not been aware that any doubts had been expressed about paediatric cardiac services at the BRI until she learned about the GMC Inquiry. Mrs Alison Thomas from South Wales told the Inquiry about her son Dafydd, who was born in April 1992 at Withybush Hospital, Haverfordwest, Pembrokeshire. Concern was expressed over the function of Dafydd’s heart and an appointment was made to see a Bristol Cardiologist at Withybush Hospital. Before that appointment Dafydd was admitted with heart failure to the Bristol Children’s Hospital. Dafydd and was diagnosed with Truncus Arteriosus  (one artery from the heart instead of two) and Mrs Thomas was told that he would need a Homograft (donor tube and valve), which would need to be replaced when Dafydd was older. In May he was transferred to the Bristol Children’s Hospital prior to his operation at the BRI. Following the successful operation Dafydd returned to the Bristol Children’s Hospital and then home. Dafydd did not survive the second operation at the University of Wales Hospital in 1996. Mrs Susan Darbyshire from Bristol gave evidence to the Inquiry about the circumstances concerning the treatment of her son Oliver, who was born with a heart murmur and major heart defects in October 1992. An Echocardiograph confirmed that Oliver would need a preliminary operation, to prepare him for open-heart surgery at a later date. This procedure was successful. Oliver has several further admissions to hospital prior to his second operation in July 1993, one to investigate his sickness following feeding (Reflux) and a second for a cardiac catheterisation to confirm that he had two large holes and one small hole in his heart. Mr Dhasmana successfully operated on Oliver in July, and he was well enough to go home in August 1993. Oliver has since been diagnosed as suffering from a rare genetic defect called CFC, Cardio-Facio-Cutaneous Syndrome, which was the cause of his problems with sickness prior to his operation in July 1993.

FULL TRANSCRIPT

   1     Day 5, 23rd March, 1999
   2   MISS GREY: Good morning, sir.
   3   THE CHAIRMAN: Good morning.
   4   MISS GREY: Our first witness today is Mrs Linda Burton, if
   5     I could ask her to come to the witness-box, please.
   6        Mrs Burton, there is a microphone in front of you
   7     which should pick up what you are saying without any
   8     difficulty. It is quite sensitive, so you can just
   9     ignore it. The first thing we will do, if it is
  10     acceptable, is ask you to stand whilst you take the
  11     oath.
  12            MRS LINDA BURTON (Sworn):
  13            Examined by MISS GREY:
  14   Q. Mrs Burton, I think it is right that you asked for
  15     a copy of your statement to be available whilst you gave
  16     evidence?
  17   A. Yes.
  18   MISS GREY: You do not yet have it. It is coming from
  19     downstairs. If at any point before it arrives, you
  20     would like to see it, you can ask for it to be called up
  21     on the screen and we will do that instead.
  22   THE CHAIRMAN: I have a copy here. Will that help,
  23     Mrs Burton?
  24   A. Thank you.
  25   MISS GREY: Is your full name Linda Jane Burton?

   1   A. Yes.
   2   Q. You are married to John Roderick Burton; is that right?
   3   A. Yes.
   4   Q. You had three sons: David, John, who is known by his
   5     second name, Michael, and Douglas; that is right, is it
   6     not?
   7   A. Yes.
   8   Q. You are here today to tell us about the events
   9     concerning David's birth, and sadly, his death about
  10     a year later at the BRI?
  11   A. Yes.
  12   Q. Can you tell us when David was born, please?
  13   A. David was born on 10th January 1990.
  14   Q. Was it a straightforward normal birth?
  15   A. It was a normal delivery, but he was a premature birth.
  16     He was born at 33 and a half weeks. The pregnancy
  17     itself had not been that straightforward. I had started
  18     to bleed at 10 weeks and I was advised to cancel
  19     a holiday I was about to go on and take rest. I later
  20     had a scan. The scan seemed to show that everything was
  21     okay. The pregnancy continued until 33 and a half
  22     weeks, when my waters broke. I was taken to Musgrove
  23     Park Hospital and put on bed rest. Two days later
  24     I went into labour and David was born at 10 o'clock on
  25     the 10th.

   1   Q. So that was in Musgrove Park Hospital in Taunton;
   2     is that right?
   3   A. Yes.
   4   Q. When he was born, did everything seem all right? Did he
   5     seem healthy?
   6   A. He was taken down to special care because he was
   7     a premature birth. We went down to see him as soon as
   8     possible afterwards. Everything seemed to be okay;
   9     nothing was said to us that evening to suggest that
  10     there was a problem. But we now know, with hindsight,
  11     that the Registrar who was on duty that night suspected,
  12     on looking at David, on his admission to special care,
  13     that he had Down's syndrome.
  14   Q. When did you learn of that suspicion?
  15   A. The following morning. My husband and I were taken to
  16     a side room by the Registrar, who explained that he had
  17     suspicions that David had Down's syndrome and that
  18     a blood test had been be sent off to one of the
  19     hospitals in Bristol for a test.
  20   Q. Did he explain to you what the nature and importance of
  21     a diagnosis of Down's syndrome was?
  22   A. I was already aware of what Down's syndrome involved,
  23     I must admit on quite a superficial level. My husband,
  24     perhaps, was less aware. The Registrar at the time
  25     answered as many questions as we asked of him, because

   1     obviously we were very shocked to hear of his
   2     suspicions, and he told us that he would pass us over to
   3     Dr Webster, one of the paediatricians at Musgrove, who
   4     would, the following day, answer any questions that we
   5     had.
   6   Q. So did you meet Dr Webster the following day, then?
   7   A. We did, yes.
   8   Q. What did he tell you?
   9   A. We had a list of questions about Down's syndrome:
  10     possible learning difficulties, bearing in mind we
  11     already had Michael, would there be any question of
  12     violence or what sort of characteristics would he have,
  13     would he walk, would he talk, the sort of questions
  14     that, you know, anybody might perhaps ask.
  15        He did suggest to us that it was very difficult to
  16     actually give a detailed sort of prognosis of what David
  17     would be able to achieve because Down's syndrome is
  18     a condition which can vary greatly, but he did tell us
  19     that having seen David in special care, that, yes, there
  20     could be perhaps digestive problems, yes, Down's
  21     syndrome children did have a tendency to have some heart
  22     defects, but there was nothing about David at this point
  23     which suggested there were any problems.
  24   THE CHAIRMAN: May I briefly ask for a pause? We can swap
  25     over and give you your statement so I get mine back,

   1     thank you.
   2   MISS GREY: You said that by the time you saw Dr Webster,
   3     you had a list of questions. Were those in your mind,
   4     or had you actually written them down?
   5   A. No, we had written some down and then during the course
   6     of conversation with him, he had, you know -- when he
   7     was talking to us, other questions came to mind. I have
   8     to say about Dr Webster that he did say to us, "Any
   9     questions that you have, I will answer any ones that
  10     I can, although obviously it is very difficult, you
  11     know, to have a crystal ball and to say what will
  12     happen". He was very approachable, very kind.
  13   Q. Did you find that writing things down in advance was
  14     helpful in trying to set an agenda or make sure that any
  15     meeting covered everything you wanted it to cover?
  16   A. I think when you are faced with news like this, and
  17     although I was aware of some of the characteristics of
  18     Down's syndrome, when it relates personally to you, you
  19     need to write these things down, because otherwise, when
  20     you are faced with someone who can perhaps provide you
  21     with the necessary answers, you need to make sure you
  22     have covered everything.
  23   Q. At that point, David was kept within the special baby
  24     care unit in the hospital at Taunton. Is it right that
  25     after about a week he developed breathing difficulties?

   1   A. Yes. I actually left the hospital. I was advised by
   2     the Registrar to go home and come and visit David
   3     whenever I felt like it, the middle of the night,
   4     whatever. One morning on arrival at the Special Care
   5     Unit we were informed he had developed difficulties
   6     overnight, not that he needed ventilating, but that they
   7     needed to think about giving him medication to help him.
   8   Q. Did that lead to the involvement of another doctor in
   9     David's care?
  10   A. Dr Jordan from Bristol, yes.
  11   Q. Who was Dr Jordan?
  12   A. Dr Jordan, we were told, was a cardiologist who came
  13     down to Taunton monthly, and that he was due to visit
  14     Musgrove, I think, either the end of the week when David
  15     first had his breathing difficulties, it may have been
  16     the second week and that they would ask Dr Jordan to
  17     look at David and assess what problems he had.
  18   Q. So what did Dr Jordan do to assess David's condition?
  19   A. He came down on a Friday, around lunchtime. David was
  20     taken from special care over to another part of the
  21     hospital, and Dr Jordan scanned his heart using a device
  22     very similar to an ultrasound scan which you have when
  23     you are pregnant. I was with him, I was with David and
  24     a nurse while his scanning was going on, and whilst the
  25     picture on the screen did not look much to me, I could

   1     make out, when it was coloured up, the flow of the
   2     heart, the blood around the heart and where it was
   3     going, and Dr Jordan explained by means of the screen
   4     and a piece of paper and a pencil that David had what
   5     was known as an AVSD. He explained this was a defect
   6     which covered all four chambers and included valves of
   7     David's heart. This news was very difficult to take.
   8     We understood, I think right from the word go, that this
   9     was a very serious heart condition.
  10   Q. And AVSD stood for atrioventricular septal defect?
  11   A. Yes.
  12   Q. What did Dr Jordan say about David's prospects if
  13     nothing was carried out to improve the condition of his
  14     heart?
  15   A. We were given to understand that his condition, if it
  16     was left, was not going to allow him to lead a very long
  17     or active life; that surgery to correct this defect was
  18     the only realistic option.
  19   Q. Did you get any impression of what was meant, what the
  20     time-scale was of "not a very long life"?
  21   A. No.
  22   Q. So surgery was the only effective option?
  23   A. Yes.
  24   Q. Was the potential surgery described at this stage?
  25   A. Not at that original -- not when David's condition was

   1     diagnosed, no, but following on from that, we met
   2     Dr Jordan on -- well, I met Dr Jordan on a regular
   3     basis, probably every four to six weeks when he came
   4     down to Taunton. We had an outpatients appointment so
   5     David's weight, progress, any problems could be
   6     monitored, and it was explained during the course of one
   7     of those meetings -- I have a feeling it was probably
   8     one of the earlier ones, that surgery would be carried
   9     out at Bristol, being the centre for the south west, by
  10     the time David was 1.
  11   Q. So was any reason given, firstly, for the timing of that
  12     particular operation?
  13   A. We were told that David needed to be as robust and as
  14     big as possible, and that about a year was the optimum
  15     time for this type of surgery. Now, David had feeding
  16     problems. We had to pack his milk with extra calories
  17     to try and get him to gain weight. He was not an easy
  18     baby to feed, but we were told that the bigger he was,
  19     the better.
  20   Q. So surgery at about one year, so as to ensure David was
  21     big enough and strong enough for the operation?
  22   A. Yes.
  23   Q. And Bristol because it was the centre for the south
  24     west?
  25   A. Yes.

   1   Q. Was there any further discussion of Bristol or the
   2     merits of sending David to Bristol for that operation?
   3   A. Other than that it was our sort of regional centre for
   4     heart surgery, and it was therefore the natural place to
   5     send him.
   6   Q. When you first met Dr Jordan, David was still in the
   7     special care baby unit at Musgrove hospital. Did he
   8     come home at any stage?
   9   A. Yes. He came home on 1st March. He was discharged from
  10     special care. I took him home. Within two weeks he was
  11     back in hospital with a chest infection. We had been
  12     warned that because of his heart defect, his lungs had
  13     a tendency to be rather wet, which I understand is
  14     a medical term, and therefore we had to be very careful
  15     with any chest infections, coughs, colds, that sort of
  16     thing.
  17        He was admitted to Musgrove to the children's unit
  18     and he was in hospital for about four days. He was
  19     discharged and the night that he came home, which was
  20     the Thursday, I did actually call out our GP on call
  21     because I was not very happy with his condition. The
  22     doctor examined him, seemed to think that he was okay.
  23     On the Saturday following his discharge from Musgrove,
  24     he was clearly unwell. We rang our GP again. This was
  25     our actual GP as opposed to one that was on call.

   1     Whilst my husband was on the phone saying that we were
   2     not happy with David's condition, he appeared to stop
   3     breathing.
   4   Q. So what did you do at that point?
   5   A. My husband informed the GP of the problem. The doctor
   6     told us to take him straight to Musgrove. There was no
   7     point calling an ambulance, by the time the ambulance
   8     got there, et cetera, he said "Just drive, take him to
   9     the paediatric department at Musgrove. I will notify
  10     the hospital you are on the way". Fortunately, my
  11     mother-in-law was with us. She had just retired as
  12     a senior physiotherapist, and it was decided that my
  13     husband would drive; I would stay with our other son,
  14     and that she would take David because she obviously had
  15     the training to resuscitate him.
  16        She resuscitated him in the back of the car. By
  17     the time they arrived at Musgrove, he was breathing. He
  18     was taken straight to the paediatric department. They
  19     were waiting for him, and he was taken from my husband
  20     and dealt with.
  21   Q. So he was dealt with in hospital. Was there any
  22     suggestion or information given to you about what was
  23     wrong with him at that time?
  24   A. We were told that he had pneumonia.
  25   Q. He remained in hospital for about one or two weeks;

   1     is that right, before he came home again?
   2   A. Yes.
   3   Q. After that episode, how was David generally until he was
   4     next admitted to hospital?
   5   A. Generally his health was quite good. Any cough, cold,
   6     we had to watch him very carefully, but his general
   7     state of health was pretty good.
   8   Q. I think you have already mentioned that during that
   9     period you saw Dr Jordan regularly; is that right?
  10   A. Yes.
  11   Q. What sort of gaps or intervals of time did you see him?
  12   A. 4 to 6 weeks.
  13   Q. And that was always at the Musgrove hospital?
  14   A. Yes, in the children's unit.
  15   Q. Was there any discussion with him at that time, then, as
  16     to the timing of surgery or any further procedures
  17     needed for David?
  18   A. He told us that before surgery could be decided upon,
  19     David would have to undergo a catheterisation test; that
  20     this would be done at the Bristol Children's Hospital,
  21     and it involved taking readings of pressures within
  22     David's heart and what I understood to be blood vessels.
  23   Q. Did he discuss with you the timing of that procedure?
  24   A. We were told that it would be done in September, or
  25     round that time, and we duly got an appointment at the

   1     Children's Hospital for the beginning of September.
   2   Q. Could we look, please, on my screen at medical record
   3      0407/48, please?
   4        That is a letter dated 8th May. Do you have that,
   5     Mrs Burton?
   6   A. Yes.
   7   Q. It is a letter dated 8th May to Dr Rostron from
   8     Dr Jordan and Dr Webster. There we are looking at the
   9     record of David's health at that time, and a concern
  10     about his weight is set out in the first paragraph, and
  11     how David is feeding. Then, at the bottom, Dr Jordan
  12     writes:
  13        "I will see him again with Dr Webster in 2 months
  14     time. I do not think there is any realistic possibility
  15     of surgical correction while he remains as small as he
  16     is, but if he can manage to grow a bit, we might be able
  17     to consider him for cardiac catheterisation when he is
  18     next seen."
  19        Is that an accurate summary of what you can
  20     recollect was being discussed at the time?
  21   A. I always knew that they wanted him as large as possible,
  22     but I find quite surprising reading that, this comment
  23     higher up that I appear to be frightened to increase his
  24     feeds. I was feeding him according to the directions
  25     I was given.

   1   Q. So there is perhaps a difference in perception or
   2     communication breakdown, perhaps, between you and the
   3     doctors as to the reason why David is not growing?
   4   A. We were told that we had to be very careful with David's
   5     fluid intake, and this is why his feeds were packed with
   6     this sort of calorific supplement. He was a very
   7     difficult child to feed, and I mean, it was a case of
   8     cramming as much fluid or liquid feed into him as he
   9     would take, but we were told how much he was expected to
  10     take.
  11   Q. Had you been given any instructions as to introducing
  12     him to solid foods at that stage?
  13   A. When is this dated?
  14   Q. This is 8th May 1990.
  15   A. I do not think that was actually ever discussed.
  16   Q. The concern, at any rate, expressed in the last
  17     paragraph, is that unless David grows a little larger,
  18     surgical correction is going to be difficult.
  19        If we could just move on, please, to page 47, this
  20     is a letter dated 6th July, this time. If we could just
  21     scroll up to the main text, please, it is a letter you
  22     can probably just see at the very bottom, again from
  23     Dr Jordan and Dr Webster, dated, as I say, 6th July. It
  24     records, I think, another visit to outpatients, where
  25     David is recorded as having done rather better over the

   1     last couple of months. At the penultimate paragraph:
   2        "Now that he has got to 6 months, we feel that we
   3     ought to make arrangements for him to have a cardiac
   4     catheter, so that we can assess the possibility of
   5     surgical correction. This has been explained to mother
   6     and she has agreed that we should take him up to
   7     Bristol, probably in about two months from now, for his
   8     catheter."
   9        Does that fit with your recollections of
  10     discussions at the time, Mrs Burton?
  11   A. Yes. I cannot honestly say at which outpatients
  12     appointment various things were discussed, but it was
  13     always the impression I had that around September time,
  14     he would go to Bristol for this test.
  15   Q. Did he in fact do so?
  16   A. Yes.
  17   Q. Can you remember the date at which he went into
  18     hospital?
  19   A. Not exactly. I think it was the first week in
  20     September.
  21   Q. If we take it from the medical records, it would be
  22     5th September. Does that accord with your recollection,
  23     then?
  24   A. If you say so, yes.
  25   Q. When he was taken to the Bristol Children's Hospital,

   1     where was he taken to, which ward?
   2   A. By name I could not really remember. I know it was near
   3     the top of the building. There was a children's ward of
   4     some description.
   5   Q. Was it just for babies, or were there older children
   6     there as well?
   7   A. No, the bit of the unit we were in, they were all small
   8     babies.
   9   Q. How long did David spend there, in total?
  10   A. I think it was a couple of days; it could even be three.
  11   Q. Did you have any time to form, in that length of time,
  12     any impression as to the Children's Hospital and the
  13     sort of environment it provided for David?
  14   A. No, not really.
  15   Q. So David was taken into this ward with babies on it.
  16     What happened to him then?
  17   A. We ended up, he was taken to various parts of the
  18     hospital for various tests. He was x-rayed in the x-ray
  19     department. We went down to another area of the
  20     hospital where he had another heart scan. The
  21     cardiologist who scanned him I have never met before and
  22     I cannot recall his name. Again, he was using similar
  23     sort of equipment, looking at the flow of the heart, the
  24     blood around the heart. He explained to me that the
  25     following morning he would have his catheterisation

   1     test; that I could accompany him down to the theatre,
   2     where it would be done. It would take probably an hour,
   3     an hour and a half. I was advised to leave the
   4     Children's Hospital and to return when it was done.
   5   Q. Did you do that?
   6   A. Yes.
   7   Q. So when you came back, what did you find?
   8   A. When I got back to the ward, there had been some sort of
   9     crisis with David on his way back from theatre. As
  10     I approached his cot, it was surrounded by medical
  11     staff. There were nurses, there was a doctor, there was
  12     an anaesthetist, and they were obviously quite concerned
  13     about David's condition. The situation was explained to
  14     me by the anaesthetist that David had turned blue on the
  15     trolley coming back from theatre, and they carry oxygen
  16     underneath these theatre trolleys and they had had to
  17     give him oxygen, and they explained his problem was due
  18     to the fact he had not been sucked out properly
  19     following the catheterisation and there had been mucus
  20     in his airways.
  21        He then said they had dealt with it and David
  22     would sleep off the anaesthetic. He did, he slept
  23     a jolly long time. There were other children in the
  24     ward or babies that had had other procedures and they
  25     all seemed to rally very quickly. David slept a jolly

   1     long time, but he did eventually wake up and the
   2     following morning I was able to take him home.
   3   Q. Can we have a look at medical record 407, page 10,
   4     please? If you can put that up on the screen, please,
   5     have you got that, Mrs Burton? There is, at the top,
   6     the date 5th September, "Returned to ward post-cardiac
   7     catheterisation", and then "tachypnoeic" is set out, and
   8     "Grunting, lots of secretions in chest, thick, creamy",
   9     and then the sats are set out.
  10        So that is a record of the particular procedure
  11     you were describing?
  12   A. I assume so. That is too technical for me.
  13   Q. David had had his cardiac catheterisation. Did anyone
  14     explain the results that had been found?
  15   A. Yes. The cardiologist, I do not know his name, came to
  16     see me. He told me that the results of the
  17     catheterisation test had shown that the readings in
  18     David's heart were acceptable for surgery, and that he
  19     would be put on the list to see Mr Wisheart.
  20   Q. Were you told again as to the timing, any details as to
  21     the timing of the operation?
  22   A. We were told it should be done when he was about a year
  23     old.
  24   Q. Was there any discussion of the risks that would be
  25     attached to that surgery?

   1   A. Not with the cardiologist at that time, no.
   2   Q. Can we have a look at medical record 0407/40, please?
   3     If you could just scroll down, could we have that on the
   4     screen, please? This is the results of the cardiac
   5     catheterisation, the report, Mrs Burton. You can see at
   6     the top:
   7        "Principal operations, cardiac catheterisation"
   8     and then the history is set out. On examination, the
   9     findings there. If we could just take it across to the
  10     next page, please, page 41, there is the results of the
  11     electrocardiogram:
  12        "Superior axis and right ventricular hypertrophy."
  13        Then a record of the AVSD findings. The last two
  14     paragraphs:
  15        "He was discharged home on his previous therapy
  16     and I will be discussing the realities with my surgical
  17     colleagues. On the haemodynamic data, he is operable,
  18     but will undoubtedly have a high operative risk. We
  19     need to assess this, and then talk to the parents and
  20     obtain their further views."
  21        It is right, is it, that the fact that David was
  22     being assessed as being a high risk for operation was
  23     not told to you at that stage, Mrs Burton; is that
  24     right?
  25   A. We had always understood that David's need for open

   1     heart surgery would be risky. We were never under any
   2     illusions that this surgical procedure was going to be
   3     without risk, but at this stage, I do not think I can
   4     recall -- no, I cannot recall a figure of risk being put
   5     on it.
   6   Q. If we could look at medical record 267/31, if you could
   7     just enlarge the date first, please, and the record of
   8     the meeting, that is a record of a joint cardiac meeting
   9     with various individuals present, including Mr Wisheart,
  10     Dr Jordan and Dr Joffe.
  11        If we could now see the main body of the text, if
  12     you could enlarge the text, please, this is a finding of
  13     a record of Mr Wisheart's discussions:
  14        "This boy at 9 months of age is about 5.6 kg. He
  15     has been investigated by ultrasound and
  16     catheterisation ..."
  17        There is a complete AVSD recorded and a finding on
  18     the pulmonary vascular resistance. It is agreed
  19     although his pulmonary vascular resistance is somewhat
  20     elevated, this did not contra indicate surgical
  21     correction.
  22         "I would like to see David in outpatients with
  23     a view to discussing this advice", presumably discussing
  24     it with you and Mr Burton.
  25        Did there come a time when you saw Mr Wisheart to

   1     discuss surgical correction?
   2   A. Yes. We were due to see Mr Wisheart in Bristol in
   3     October. We had an appointment come through. The day
   4     that we were due to come up to Bristol, David was
   5     admitted to Musgrove Park in Taunton. He kept being
   6     sick. The hospital in Taunton rang Bristol and informed
   7     Mr Wisheart we would not be able to keep that
   8     outpatients appointment, and we were told that another
   9     one would be sent. This appointment came through,
  10     I believe, the second week in December.
  11   Q. Where did the meeting with Mr Wisheart take place, then?
  12   A. It took place in the Bristol Children's Hospital, in the
  13     outpatients department.
  14   Q. So you came up to Bristol for it?
  15   A. Yes.
  16   Q. Did Mr Wisheart examine David?
  17   A. Yes. He had his details of his catheterisation, he
  18     weighed him, checked him over.
  19   Q. What did he tell you about what he proposed to do?
  20   A. He explained to us that he was prepared to operate on
  21     David. He would try and patch the hole that existed
  22     over all four chambers, and he also made the point that
  23     some surgeons probably would not undertake the operation
  24     on David because he was Down's syndrome. He gave us the
  25     impression that other centres might not operate on him,

   1     almost because of his handicap, it would be a waste of
   2     time and resources.
   3   Q. Did he particularise who those surgeons might have been,
   4     or other centres might have been?
   5   A. No.
   6   Q. So how did you feel when being told this by Mr Wisheart?
   7   A. We both felt very encouraged, grateful to him, that he
   8     was prepared to undertake surgery on David, and we liked
   9     him.
  10   Q. How did he strike you in communicating with him?
  11   A. He was very quietly spoken, very kind, very
  12     approachable, and struck us as being a very genuine
  13     surgeon.
  14   Q. Had you had experience of dealing with other
  15     consultants, Mrs Burton?
  16   A. Not at this time, but following on from our experience
  17     up in Bristol, I have had contact with other surgeons
  18     with regard to surgery on my other two children, and by
  19     comparison, we both, looking back, Wisheart was an
  20     extremely approachable consultant.
  21   Q. What did he do in order to explain the nature of the
  22     operation to you?
  23   A. He did explain that he would attempt to patch the hole
  24     over the four chambers. We had already had this
  25     procedure explained to us in the run-up to meeting

   1     Mr Wisheart. I cannot say exactly when this was done,
   2     or who did it, but we knew that a patch would be put
   3     over the four chambers of David's heart. We knew it was
   4     high risk surgery.
   5   Q. Was there any particular figure or percentage given to
   6     the risks attached to the surgery?
   7   A. This is where my husband and I disagree. My memory was
   8     that Mr Wisheart gave us a 60:40 chance of success; my
   9     husband seems to think it was 50:50.
  10   Q. In either case, how would you describe that risk?
  11   A. As regards a medical point of view, I mean, to me,
  12     a 60:40 chance, I mean, he stood a better than average
  13     chance of coming out of it, but we knew, and we always
  14     knew, that really we had no option.
  15   Q. Did Mr Wisheart explain the time of the operation at
  16     that stage, when it would take place?
  17   A. He told us that he would put David on his surgical list,
  18     and that we should be hearing from him within a couple
  19     of months.
  20   Q. So that would mean an operation when, at what age?
  21   A. He would have been around a year, perhaps 13 months.
  22   Q. If we could just have a look at medical record 267/32,
  23     please, and if you could just enlarge the date, first,
  24     and the addressee and put that up on the screen,
  25     please. Do you have the date and addressee there,

   1     Mrs Burton?
   2   A. Yes.
   3   Q. If we can now look at the main body of the text, please,
   4     I hope that is legible in front of you, Mrs Burton.
   5     That is a record of a letter from Mr Wisheart dated
   6     19th December, and it speaks in the second paragraph
   7     about David attending the outpatients "today", so that
   8     appears to be a record of the meeting you have
   9     described, or thereabouts; is that correct?
  10   A. Yes.
  11   Q. And then in the substantial paragraph towards the end,
  12     he writes:
  13        "On the basis of the September information
  14     [presumably a reference to the cardiac catheterisation]
  15     I had a full discussion with the parents advising them
  16     that the defect should be corrected and pointing out the
  17     potential risks and benefits involved, but acknowledged
  18     that the increase in pulmonary vascular resistance would
  19     increase the operative risks."
  20        Can you remember any discussion of pulmonary
  21     vascular resistance?
  22   A. No.
  23   Q. Was any explanation given to you of the dangers or
  24     problems that might be caused by the increased flow of
  25     blood to the lungs from David's heart?

   1   A. We knew that, because of the flow around the heart,
   2     going the wrong way, there was an increased risk from
   3     coughs and colds and that sort of thing, because his
   4     lungs were wet. We also knew that David's operation
   5     should be done at about a year, but as to the technical
   6     reasons as to why that should be, I cannot honestly say
   7     that that was explained to us in that sort of detail.
   8   Q. So the cardiac catheterisation had been carried out in
   9     September. You had seen Mr Wisheart in outpatients in
  10     December. How was David's health at this time?
  11   A. He had one or two colds. He was in fact admitted to
  12     Musgrove again with a chest infection, but we were told
  13     that he would be very carefully assessed before any
  14     surgery took place. We finally got a date for that in
  15     February. He had not been particularly well, and when
  16     I rang Bristol to check that I was to bring him up for
  17     surgery, I did specifically say that he now appeared, in
  18     February, to be very well, but I wanted to make sure,
  19     you know, that it was not just my word on it, that he
  20     would be properly clinically assessed.
  21   Q. Did that take place?
  22   A. Yes.
  23   Q. When did you arrive at the Bristol Royal Infirmary for
  24     the operation?
  25   A. We arrived on Monday, 24th February. I took him up,

   1     because they wanted him admitted prior to surgery, so
   2     they could assess him, x-rays, whatever other tests they
   3     needed to do. My husband came up to join me the night
   4     before surgery. We met Mr Wisheart at about
   5     9 o'clock --
   6   Q. On the day of the operation?
   7   A. No, the night before the operation, 9 o'clock at night.
   8     Mr Wisheart said that he had looked at David's x-rays
   9     and whatever tests they had done and that surgery would
  10     go ahead the following morning.
  11   Q. Was there any discussion with him as to the risks or
  12     dangers involved in the operation at that stage?
  13   A. No, other than what we had already discussed and knew
  14     about.
  15   Q. Could we have a look, please, at medical record 267/33?
  16     Can you blow up the bottom two-thirds of the page,
  17     please, so we have everything enlarged from doctors and
  18     dentists.
  19        This, Mrs Burton, is the consent form that was
  20     signed for David's surgery. I think it is your
  21     signature, is it not, at the bottom?
  22   A. Yes.
  23   Q. At the top, the type of operation, investigation or
  24     treatment is described:
  25        "Repair of AV canal defect."

   1        If you look at the paragraph underneath, it says
   2     that the operation has been explained to the patient or
   3     parent or guardian, and then there is the name of
   4     a doctor underneath, Dr Blazeby, I think. Do you have
   5     any record of such a discussion with Dr Blazeby?
   6   A. I remember signing this form, I remember reading it, and
   7     I remember feeling that all the questions that we had
   8     asked over the run-up to David's surgery had been
   9     answered, but no further discussion over risks or
  10     anything had been made. I was aware that anaesthetic
  11     carries a risk, but as regards this doctor, I cannot
  12     remember who he was.
  13   Q. You say you were aware that an anaesthetic carries
  14     a risk. What sort of risk was that?
  15   A. From a technical point of view, I cannot say, but I just
  16     know, perhaps by having a mother-in-law who is involved
  17     in the medical profession, that anaesthetic is an
  18     anaesthetic, and it is risky.
  19   Q. Do you know, were you told as to what might happen if
  20     the anaesthetic procedures went badly?
  21   A. No. At no point through any of these discussions with
  22     any doctor was any question or explanation given as to
  23     the risk of brain damage.
  24   Q. So you signed the consent form. Perhaps you have little
  25     memory of any discussion with any other doctor at the

   1     time of doing so. Then the night passed and David then
   2     was taken down to operation the next day?
   3   A. Yes. My husband and I spent the night in one of the
   4     rooms that the BRI has, one of the hostels. We returned
   5     to the ward at 7.30 or so on the 28th. David had
   6     already been given his pre-med. He was drowsy. We had
   7     been shown around the IT unit. We were advised that the
   8     best course of action would be that once David had gone
   9     down to theatre, that we should leave Bristol, go
  10     anywhere, and then ring the unit at about lunchtime to
  11     see how things were, and then we would be told David's
  12     condition, what had happened, and then we would be
  13     advised as to the time to return to the BRI.
  14   Q. You say you were shown around the intensive care ward.
  15     Who showed you around?
  16   A. The nursing sister on duty.
  17   Q. What was the purpose of doing that?
  18   A. She had explained to us that ITU was a pretty scary
  19     place, and that when David came back from theatre, he
  20     would be attached to various monitors; there would be
  21     drains, drips and the idea of it was to show us what the
  22     unit would look like, what we could expect, so hopefully
  23     to lessen the shock, when you see it done to your own
  24     child.
  25   Q. Was that a helpful thing for you?

   1   A. Yes.
   2   Q. You say that the suggestion was made that you should go
   3     away from the hospital whilst David was undergoing the
   4     operation?
   5   A. Yes.
   6   Q. Did you think that was a useful suggestion?
   7   A. Yes.
   8   Q. So what did you do?
   9   A. We took David down -- we went down with David to
  10     theatre. He was anaesthetised. We left him, and we
  11     went to Moreton-in-the-Marsh.
  12   Q. So when did you next have news of David?
  13   A. I rang the hospital at midday, or lunchtime. We were
  14     instructed that was the time to ring. When I rang,
  15     I was informed by one of the nurses -- I do not know who
  16     it was -- that David was still in theatre; that his
  17     operation had been delayed because of a crisis on the
  18     ward, that Mr Wisheart had had to attend. Therefore, he
  19     was not out of surgery, but she asked me where we were.
  20     When I told her, she suggested that we make our way back
  21     towards Bristol, come a bit nearer to Bristol, and ring
  22     again about 4 o'clock, which we did.
  23   Q. Did she explain to you what had happened to David whilst
  24     Mr Wisheart had gone to attend another emergency?
  25   A. No. She just said that his operation had been delayed,

   1     but we knew that David had been anaesthetised as we left
   2     the hospital.
   3   Q. Do you know who was in attendance with David at that
   4     stage?
   5   A. We did not at the time, but we found out afterwards,
   6     because when we rang at 4 o'clock and we were told David
   7     was back on ITU and we were advised to return to the
   8     BRI, which we did. On our arrival back at the
   9     cardiology unit we were met by the parent support nurse,
  10     who was a stand-in because Helen Stratton, who I had met
  11     at the beginning of the week, was on holiday.
  12        We were told by this liaison nurse that everything
  13     was okay, that David was on ITU and would we like to go
  14     and see him. We met the anaesthetist on our way to ITU,
  15     who seemed less than happy with the way that David's
  16     surgery had gone. He actually said it had been a "very
  17     long haul". When I questioned the liaison nurse as to
  18     why the anaesthetist had not been so enthusiastic about
  19     David's operation, she explained to me that he had had
  20     to remain with David in theatre whilst Wisheart was
  21     elsewhere.
  22   Q. That is he, the anaesthetist, had had to remain?
  23   A. Yes.
  24   Q. So you were first able to see David in the ITU ward?
  25   A. Yes.

   1   Q. How was he?
   2   A. Even though we had been prepared by the previous, you
   3     know, look round that things would be pretty horrendous,
   4     it was a shocking sight. He was wired up, drips and
   5     drains, but the staff who were looking after him seemed
   6     quite satisfied with his condition.
   7   Q. What impression did you form of the nursing care on the
   8     ITU at that time?
   9   A. I suppose, my impressions of ITU having come from the
  10     television, you get the idea that ITU is very quiet and
  11     peaceful, with the occasional blipping of machines. You
  12     only have to be on there for a little while to realise
  13     it is not like that at all. It is very busy. Staff
  14     never sat down, they were constantly on the move,
  15     testing and reading and administering drugs, very
  16     caring, very attentive.
  17   Q. Were you able to find out how many nurses were assigned
  18     to look after David?
  19   A. I am not sure about this. I know that there was always
  20     one nurse with David the whole time.
  21   Q. It was a mixed ward, both adults and children?
  22   A. Yes.
  23   Q. Were there any adults at the time when David was there?
  24   A. Yes.
  25   Q. What was the mix between adults and children?

   1   A. The IT unit itself had a sort of an extra annex off,
   2     whether it was an overspill if they had more patients in
   3     than normal. David was on ITU, there was another little
   4     boy in the annex next-door, but surrounding David at the
   5     time he arrived on ITU, they were adults.
   6   Q. Did that affect you in any way?
   7   A. No, not really.
   8   Q. You saw David after the operation. It was a shock to
   9     you. What were you told about his condition at that
  10     time?
  11   A. We were told that they were quite satisfied with his
  12     condition at this stage. We did meet with Mr Wisheart.
  13     Again, I cannot remember whether it was that evening or
  14     whether it was the following morning. I have a feeling
  15     it was the night of David's operation. He informed us
  16     that David had, in his words, the defect was "massive",
  17     and that whilst he had attempted to patch the defect, he
  18     had not been totally successful and the shunt remained.
  19        From that, we understood that David still had
  20     a hole in his heart, but we also gained the impression
  21     that this was not regarded as a life-threatening
  22     problem.
  23   Q. Your impression was that the surgery had at least been
  24     partially successful?
  25   A. Yes.

   1   Q. And that David's condition was not now life-threatening?
   2   A. No.
   3   Q. What was said to you about the prospects of recovery now
   4     on the ward?
   5   A. It was explained that David was on a sort of cocktail of
   6     drugs; that he was sedated, he was being ventilated and
   7     that over the next few days, the idea was to wean him
   8     off support drugs, dependency on the ventilator and to
   9     sort of bring him back up.
  10   Q. Did you watch that process being carried out over the
  11     next few days?
  12   A. We stayed at the hospital over the weekend. At all
  13     times either my husband or I were there, and we knew
  14     that as they were attempting to withdraw some of the
  15     drugs that David was on, his saturation, blood
  16     saturation levels, kept dropping, and they had to then
  17     sort of reintroduce the drug back into the system to
  18     enable his saturations to be maintained.
  19   Q. What impression were you given as to the seriousness of
  20     that situation, at that stage?
  21   A. We knew that -- if I said things were not going quite
  22     according to plan, they were obviously trying to
  23     withdraw the support drugs from David, and they were
  24     having to sort of reintroduce them, but at no time were
  25     we given any impression that this was a life-threatening

   1     problem.
   2   Q. Is there any reason why you now think that the staff at
   3     the time may have thought that things were more serious
   4     than you believed at the time?
   5   A. Yes. This again is with hindsight: because I had
   6     a three-year old son at home, whilst David was at
   7     Bristol, there were two things. First of all, my
   8     parents came to look after Michael. The day after
   9     David's surgery -- I did not know this at the time --
  10     the health visitor from our local practice turned up at
  11     my house and informed my parents that the surgery had
  12     received news from Bristol that David had had his
  13     operation and that things were not going well. We did
  14     not know that.
  15   Q. Could we look, please, at medical --
  16   A. I am sorry, can I add to that? The other reason I say
  17     that is that my mother-in-law, who I have previously
  18     mentioned was a trained senior physiotherapist, came to
  19     Bristol on the Monday to be with me, because my husband
  20     had to go back to work. I had spoken to her over the
  21     weekend about David's condition, and I do not know what
  22     it was, but there was something that I told her that was
  23     going on at Bristol, whether the medical staff had told
  24     me and I told her over the phone, that suggested to her
  25     that David's condition was not as it should be. Now,

   1     what that was, she cannot remember.
   2   Q. If we could look, please, at medical record 267/9, at
   3     the top there is a record of an echocardiogram dated
   4     1st March 1991:
   5        "There still appears to be a substantial VSD in
   6     the proximal septum at the site of repair. There is
   7     severe tricuspid and mitral regurgitation."
   8        Then towards the bottom:
   9        "The left ventricle is contracting well."
  10        That is a record of the extent of repair that had
  11     been possible after the operation. Does that accord
  12     with what you were told by Mr Wisheart as to the success
  13     of the surgery?
  14   A. I recall Mr Wisheart telling my husband and me that
  15     a shunt remained; he had not been able to repair the
  16     hole totally, but that David's heart was working well.
  17   Q. Then, if we scroll down through the rest of the page,
  18     you can see that towards the top, pacing is being
  19     required and a couple of lines later:
  20        "Pacemaker not capturing properly ..."
  21        Then hand bagging has been required, then a record
  22     of improving on atrial pacing, and then the same problem
  23     towards the bottom of the page so what we have there is
  24     a picture of difficulties with David in the initial
  25     stage of post-operative recovery?

   1   A. What date is that?
   2   Q. That is 1st March, Mrs Burton. Do you remember any of
   3     that?
   4   A. I seem to remember the occasional bagging, but most of
   5     the time he was on a ventilator.
   6   Q. If we could just have the next page, page 10, at the
   7     top, on the 2nd March now:
   8        "Difficulty with pacing overnight: sequential
   9     pacing initiated ... gases improving."
  10        Then a record:
  11        "Seen by WD, improved."
  12        As we drop down through that page, if we can do
  13     so, please:
  14        "Seen by JDW [that must be Mr Wisheart] doing
  15     well - stable."
  16        Again, if we can turn over to page 11, please, at
  17     the top of that page there is a record of:
  18        "Seen by WD - stable ... recommence weaning of
  19     Dopamine."
  20        Further down, repeated on the page, another entry
  21     for that same date, "Weaning off Dopamine."
  22        If we could scroll down towards the bottom of that
  23     page, on 4th March, "Seen by Mr Wisheart, stable."
  24        So the impression being given by those notes is
  25     that David's condition is stabilising to a degree, but

   1     they were attempting to wean him off Dopamine. Is that
   2     something you were aware of at the time?
   3   A. What we were led to believe was that they were trying to
   4     remove supportive drugs over a period of time; that that
   5     was their aim. That it may take longer than perhaps it
   6     might normally have done, but that the dosages would be
   7     gradually withdrawn and that, you know, progress might
   8     be slow, but progress was being made.
   9   Q. If we could just turn over the page again to page 12,
  10     there is a record there now dated 4th March at
  11     2100 hours, just a few lines down:
  12        "Sudden decrease in O2 oxygen saturation. Query
  13     cause, followed by decrease in blood pressure."
  14        Then he is bagged and suctioned, saturation
  15     recovers and he is seen by Dr Bolsin, the anaesthetist.
  16        Were you aware at the time, Mrs Burton, that there
  17     might have been a sudden decrease or deterioration in
  18     David's condition at about this time, late on 4th March?
  19   A. Whenever doctors appeared to sort of treat David in any
  20     way, we tended to leave or move out of the way. It is
  21     pretty distressing to see any treatment being carried
  22     out on your child, and we found that it was easier to
  23     leave ITU whilst any treatment was being done, and then
  24     return afterwards.
  25   Q. What impression did you form, then, of the size of the

   1     team that were looking after David?
   2   A. Obviously there was a regular change of staff, handover
   3     between shifts. We knew that Mr Wisheart had seen David
   4     and we knew that there were consultations going on about
   5     his condition between the various disciplines that were
   6     looking after him. We assumed that he was getting the
   7     best possible care.
   8   Q. Did you form any impression as to who was in overall
   9     charge of David's care at this stage, the post-operative
  10     stage?
  11   A. We assumed it was Mr Wisheart.
  12   Q. When you say you assumed it was Mr Wisheart, Mrs Burton,
  13     why did you make that assumption?
  14   A. Because he was a surgeon.
  15   Q. You were talking about the difficulties about weaning
  16     David off drugs, but at the same time you mentioned that
  17     your impression was that the condition was not
  18     life-threatening. Is that a fair summary?
  19   A. Yes.
  20   Q. At what point did you become aware that things were
  21     actually more serious than you had realised?
  22   A. On 5th March, I decided to go home because I had not
  23     seen my son, my other son, and my mother-in-law said
  24     that she would stay at the hospital, the idea was to
  25     give me a day off, if you like. I would never have left

   1     had I known that there was a problem. I returned home.
   2     I spent the Wednesday night at home. During Thursday my
   3     mother-in-law phoned my husband at work, got him out of
   4     a meeting, and informed him that we had to return to
   5     Bristol.
   6   Q. Just a small point, Mrs Burton, just to clear up one
   7     thing. You said that on 5th March you decided to go
   8     home. Just for the sake of the record, your statement,
   9     paragraph 22, actually says 6th March. Do you recollect
  10     which is correct?
  11   A. No. I was definitely at home on the 6th and I am pretty
  12     sure I left in the later part of the 5th.
  13   Q. So you went home and received news from Bristol?
  14   A. I was actually at a friend's house when my husband rang
  15     to say his Mum had rung from Bristol to say could we
  16     return.
  17   Q. Mrs Burton, could I ask you, would you like to continue
  18     at this moment, or would you like a break?
  19   A. I am all right.
  20   Q. If you would like a break at any time, please say so.
  21        You were told you should return to Bristol?
  22   A. Yes.
  23   Q. Any reason given at that time?
  24   A. That David's condition was deteriorating.
  25   Q. So you went back in?

   1   A. Yes.
   2   Q. Who did you see when you got back to the ward?
   3   A. First of all, we met my mother-in-law, who explained
   4     that David's condition appeared to be worsening. We met
   5     a Registrar again, I do not know who it was, never seen
   6     him before, who said that they were having problems with
   7     David's saturation levels. They were having to bag him
   8     more often than previously. They suggested about
   9     6 o'clock in the evening that it would be a good course
  10     of action to insert a chest drain, which they did. We
  11     were informed that Mr Wisheart was not in Bristol.
  12        During the course of the evening, they were having
  13     to bag him on a more regular basis, because every time
  14     they tried to put him back on the ventilator, his
  15     saturations would be maintained for a short while, and
  16     then they would begin to drop.
  17        We knew enough from his previous bouts of
  18     pneumonia and this sort of thing that we should be
  19     looking at saturations in the 90s. When they began to
  20     drop into the 80s, they would take him off the
  21     ventilator, bag him and then put him back on.
  22   Q. Was he then seen by someone else?
  23   A. Yes, about 10 o'clock at night a consultant anaesthetist
  24     was called in, and it was explained to us that David's
  25     lungs were becoming very stiff and that it was taking

   1     greater effort on the part of the nurse who was doing
   2     the bagging to actually force the oxygen, air, whatever
   3     it was, into his lungs. This was then explained to us,
   4     that the condition would probably get worse to the point
   5     where the lungs would be so resistant to this bagging
   6     process that if it went on too long, his lungs would
   7     burst.
   8   Q. What were they doing to treat David at that stage, then?
   9   A. They suggested that the course of action open to them
  10     was to give him a massive dose of Frusemide.
  11   Q. How did you react to that?
  12   THE CHAIRMAN: Mrs Burton, if you would like to take
  13     a break, do tell us. If you wish to stay there, take as
  14     long as you need.
  15   MRS BURTON: I am okay, thanks.
  16   MISS GREY: Mrs Burton, the account of the next few hours is
  17     set out in your statement. We can go through it in the
  18     witness-box, if you like, or we can simply take it from
  19     the statement. It is up to you to decide which you
  20     prefer.
  21   A. After the consultant had explained that they had given
  22     him a great dose of Frusemide, the idea was to try and
  23     drain off, so we understood, fluid from his body to
  24     enable his lungs to function. When it was explained to
  25     us that his lungs could possibly burst, I took my

   1     husband and my mother-in-law into the family room which
   2     is attached to the ITU, the unit, and when the nurse
   3     came with us, I said that it was pretty obvious that
   4     David was not going to make it, was it possible to turn
   5     the ventilator off. The consultant anaesthetist came to
   6     see us, a very nice chap, and understood what I was
   7     asking him to do. He explained that it was not
   8     possible, that he was not allowed legally to do what
   9     I was asking, and that, having given him this dose of
  10     Frusemide, they then had to wait and see what effect
  11     this drug would have. If it proved to be ineffective,
  12     they could then put him back on the ventilator; the
  13     ventilator would then fail to oxygenate his blood
  14     adequately, his blood saturations would drop. They
  15     would drop sufficiently that he would become brain dead,
  16     and then they could turn the ventilator off.
  17   Q. Do you know the name of the consultant anaesthetist?
  18   A. No.
  19   Q. So those options were explained to you?
  20   A. Yes.
  21   Q. Was that the course of action you decided to follow?
  22   A. If I said we decided to follow it, we actually were
  23     given no choice. I had asked him to turn the ventilator
  24     off. He informed us he could not do that and that he
  25     had to -- that he had given this dose of Frusemide and

   1     if that had no effect, then they would put him back on
   2     the ventilator and the ventilator would fail to
   3     oxygenate his blood because of the problems he was
   4     having and brain death would occur. We agreed that, you
   5     know, that is what would happen. The anaesthetist
   6     explained to us that unfortunately he had no idea how
   7     long it would take for the saturation levels to reach
   8     that critical point, but, you know, it would happen
   9     eventually.
  10        We returned to ITU. The nurse on duty suggested
  11     that we sort of, you know, held David's hand.
  12     I insisted on holding him. It took seven minutes.
  13   Q. And then David died. Mrs Burton, after that had
  14     happened, I think you left the ward, did you not?
  15   A. Yes, after David had died, once the saturation levels
  16     had dropped, the consultant anaesthetist came along. He
  17     took one look at the readings -- I mean, they had
  18     tumbled -- and he said death had occurred. He switched
  19     the ventilator off. The nursing staff then suggested
  20     that if we returned to the family room, which is a short
  21     walk, if that, from the IT unit, that they would
  22     dismantle all the life support equipment and then we
  23     could go back and see David.
  24   Q. And that was on 7th March?
  25   A. Yes.

   1   Q. So you went to the family room. Can you just describe
   2     that room to us?
   3   A. It had comfortable seats. It had obviously been kitted
   4     out with the intention of making it an area where, if
   5     you wished, you could sit away from other parents, other
   6     relatives on the unit, that you could be alone, and
   7     also, if you wanted, we could have had David in with
   8     us.
   9   Q. And you decided not to; is that right?
  10   A. Yes.
  11   Q. Were you left alone in that room?
  12   A. We had barely got back into the room and sat down when
  13     a doctor appeared, a junior doctor. I have no idea who
  14     he was; I can only assume he was a junior doctor,
  15     because he came through the door with a piece of paper
  16     in his hand. He approached my husband and asked him to
  17     sign this piece of paper. When my husband asked him
  18     what it was, he said it was an agreement for the
  19     hospital to do a post-mortem. I mean, we had literally
  20     come out of ITU and got back into this family room,
  21     I mean, a matter of minutes, five minutes at the
  22     outside, and there was this junior doctor suggesting
  23     that we should agree to a post-mortem. This had never
  24     been raised with us.
  25   Q. Could I just ask you to comment for the sake of

   1     completeness on two pages of a medical record? If we
   2     could have file 267/124, can you enlarge the first three
   3     columns, please?
   4        This is the nursing care plan, Mrs Burton.
   5     Although it is not easy to see it, you can see the date
   6     at the top left-hand corner, 6th March 1991?
   7   A. Yes.
   8   Q. Then it goes through various aspects of the nursing care
   9     of David, respiratory, cardiovascular, and so on. It
  10     then goes on to the next page, page 125. If you rotate
  11     that, and give us, please, the bottom of the page, can
  12     you see at the very last horizontal passage there, there
  13     is a paragraph starting:
  14        "Working, playing, sexuality, sleeping and dying."
  15        What that says there for 6th March:
  16        "Parents spoken to at length re David's impending
  17     death and after he died. Spent time with David and
  18     given support re post-mortem, et cetera."
  19        Can you recollect any support or assistance being
  20     given to you about a post-mortem?
  21   A. When the doctor appeared with this piece of paper,
  22     asking my husband to sign it, we were both horrified.
  23     It had never arisen that a post-mortem would be
  24     necessary. We understood that because David had lived
  25     as long as he did after surgery that a post-mortem was

   1     not required. However, the nurse who was with us, who
   2     came with us back to the family room after David died,
   3     was horrified at this doctor's lack of sensitivity, and
   4     ushered him out of the room. She then came back and
   5     said, you know, "You obviously have time to think about
   6     this. It is a hospital post-mortem and it will enable
   7     learning to be done from David's death." Obviously
   8     David's operation had not been successful and it would
   9     enable them to find out why.
  10        We spent some time discussing this between us, and
  11     in the end, we concluded that something good in the way
  12     of learning of what, if anything, went wrong, you know,
  13     that they could gainfully acquire from David's case,
  14     that we would give permission for a post-mortem.
  15     I would also like to point out at this stage that no
  16     question was ever raised about organ retention. We know
  17     that David's heart and some tissue samples were kept.
  18     Whilst I can fully accept that tissue samples are
  19     necessary, if we had been asked if they could take
  20     David's heart, I think it is very likely that we would
  21     have refused. On the other hand, had it been explained
  22     to us why they wanted to keep David's heart, we may have
  23     given it consideration, but I doubt very much if
  24     permission would have been granted for that.
  25   Q. At that stage, when there was a discussion of

   1     a post-mortem, you had no understanding that parts of
   2     the body such as David's heart might be retained?
   3   A. What we understood from the post-mortem was that David
   4     would be examined, his major organs would be examined
   5     and that after examination was complete, that everything
   6     would be put back and returned to us.
   7   Q. When did you first learn that that might not have been
   8     the case?
   9   A. We learned in a letter from the BRI that came with an
  10     accompanying letter from the Heart Action Group the day
  11     before it hit the press, which is what, three weeks
  12     ago? Four weeks ago?
  13   Q. For the sake of the record, you discovered that David's
  14     heart had indeed been retained; is that correct?
  15   A. We had this blanket letter -- we had a copy of the press
  16     release that came from the BRI saying that organs had
  17     been retained. We had an accompanying letter from the
  18     Heart Group. We then had to wait probably 10 days for
  19     a follow-up letter from the BRI which informed us that
  20     hearts had been kept. We were then asked to fill in
  21     a form as to whether we wanted to know whether David's
  22     heart had been kept, to which we said yes. That letter
  23     went back to the BRI. We then got another letter back
  24     from the BRI informing us that David's heart and some
  25     tissue samples had been kept.

   1        The other aspect of this letter, which we found
   2     very patronising, was that included in this letter was
   3     a paragraph which stated that, shocking as this news
   4     would be -- that I have to say is the understatement of
   5     the year -- we should take some comfort in the knowledge
   6     that by the retention of David's heart, advances had
   7     been made in paediatric cardiac surgery. Our immediate
   8     response to that was, "Not at Bristol, it did not" and
   9     secondly, and I have to say, this too is using
  10     information that we have acquired from elsewhere,
  11     because David was one of the 29 cases looked at by the
  12     General Medical Council, we asked for transcripts of the
  13     Medical Council in any -- where they referred
  14     specifically to David's case.
  15        What we understood from the transcripts are two
  16     things: first of all, that at no time following David's
  17     death did Mr Wisheart or his surgical team ever sit down
  18     and discuss what had gone wrong, or what they could
  19     learn from David's operation, which was the very reason
  20     we gave permission for the post-mortem, and secondly,
  21     and again, I may be mistaken here, but I understand that
  22     David's histology notes referring to his post-mortem
  23     were not written up until 1997, some six years after his
  24     post-mortem was done. Our argument to that would be,
  25     how can you learn from anything, if you do not sit down

   1     is discuss it, and if you do not write up the notes?
   2   Q. So your understanding from that source, that is the GMC
   3     proceedings, was that no learning process had taken
   4     place as a result of David's post-mortem?
   5   A. That is what we understood.
   6   Q. But it is right, is it not, that that is something you
   7     do not know directly?
   8   A. That is only the impression that we have gained from
   9     reading the transcripts, and I will accept that our
  10     interpretation may be incorrect.
  11   Q. So that, therefore, is a matter that the Inquiry cannot,
  12     itself, look into further and investigate, whether or
  13     not that is an accurate impression?
  14   A. Yes.
  15   Q. Taking you back to the events still on 7th March, you
  16     had given permission for a post-mortem?
  17   A. Yes.
  18   Q. Did you leave the hospital thereafter?
  19   A. After David had died, the nursing staff dismantled his
  20     life support machine equipment, and we returned to ITU
  21     to see him. The nurse on duty at the time, when she
  22     came to take us back to ITU, had obviously been
  23     smoking. We had this discussion over the merits of
  24     smoking on a cardiac ward, considering smoking is
  25     supposed to be one of the main reasons of cardiac

   1     disease, and she said that she never ever had come to
   2     grips with the death of a child and that they had had
   3     a bad week. We knew ourselves they had lost at least
   4     two other children that week.
   5   Q. I can tell the Inquiry panel that we have checked the
   6     surgeon's log and whilst, again, this is not a matter
   7     which can be definitively stated until a proper analysis
   8     had been taken, nevertheless, it does appear that two
   9     children did die: on 5th March and also on 2nd March,
  10     a young boy and a young girl. Is that consistent with
  11     what you were told by the nurse?
  12   A. Yes.
  13   Q. You returned to say goodbye to David. Where did that
  14     take place?
  15   A. In ITU.
  16   Q. Then you left the hospital?
  17   A. Yes.
  18   Q. Did you have any further contact with Mr Wisheart after
  19     that?
  20   A. Yes. After we got home, my husband returned to Bristol
  21     the next day to sort out the death certificate. We
  22     wrote a letter to Mr Wisheart thanking him for what he
  23     had done.
  24   Q. Could we just call up, please, file 267/27, and can you
  25     enlarge it so that the address is not given? Can we

   1     have that on the screen, please?
   2        Is that the letter you wrote to Mr Wisheart?
   3   A. Yes.
   4   Q. How did you feel about the care that had been given to
   5     David at that stage?
   6   A. We assumed, we felt, that everything that could have
   7     been done for him had been done. Our GP came to see us
   8     on the 8th. I remember saying to him that the comfort
   9     that we had was that we could all feel that every
  10     possible thing that could have been done for David,
  11     every possible chance he could have had, he had been
  12     given.
  13   Q. Did Mr Wisheart write back to you?
  14   A. Yes, he wrote and apologised that he had not been in
  15     Bristol at the time of David's death, and that -- he
  16     expressed his regret at David's death and that if we
  17     wished to go and see him at any time to discuss David's
  18     case, he would be more than willing to see us.
  19   Q. Can we see, please, page 26 of file 267. Again, can you
  20     enlarge it in the same way, please? That, I think, is
  21     the letter that Mr Wisheart wrote to you after you had
  22     written to him?
  23   A. Yes, that is right.
  24   Q. Did you take up the offer to go and speak to him about
  25     the operation and how it had gone?

   1   A. No, we did not. What we did do was, we asked for
   2     a copy of the post-mortem. When we got it, we took it
   3     to our GP. He readily admitted that bits of it were
   4     beyond him, that it was too technical, but he did inform
   5     us that a page was missing from it, but we felt that we
   6     probably were not going to ever really fully understand
   7     the technicalities of David's death. We felt as
   8     satisfied as we could have done that everything that
   9     could have been done for him had been done.
  10   Q. Did you understand anything about the mechanics or the
  11     reason for David's death?
  12   A. From his death certificate, death was given as -- one of
  13     the reasons for his death was pulmonary hypertension.
  14     This was explained to us, that it was damage to his
  15     lungs and that the damage had been done by living with
  16     the AVSD for 14 months.
  17   Q. Do you have any comment to make, therefore, on the
  18     timing of the surgery?
  19   A. One can only conclude from that that his surgery should
  20     have been done earlier.
  21   Q. When had you understood the surgery had been planned
  22     for?
  23   A. We understood that it would be done by the time that he
  24     was 1.
  25   Q. In fact, it took place when he was just under 14 months?

   1   A. Yes.
   2   Q. Mrs Burton, did you have any further discussion about
   3     the extent to which the operation would have been
   4     carried out, or might have been carried out, at Bristol
   5     when it might not have been carried out elsewhere?
   6   A. With whom in particular, do you have in mind?
   7   Q. Well, could I take you to paragraph 32 of your
   8     statement, Mrs Burton, which is at witness 1, page 12?
   9     Could we put that on the screen, please?
  10   A. We did have this liaison with the Bristol Downs Heart
  11     Group, a lady who is sort of their liaison officer,
  12     Sheila Forsyth. I met her just before David had his
  13     operation. She had informed us that Bristol's success
  14     rate in cardiac surgery may not compare favourably with
  15     other hospitals because Bristol undertook surgery that
  16     other hospitals might not be prepared to consider.
  17        We have no direct evidence of that; that is only
  18     what she said.
  19        The other point was, while we are talking about
  20     Sheila Forsyth, after David died we had quite a lot of
  21     contact with her, and she asked us how we felt about
  22     David's surgery and what had happened, and so confident
  23     were we that David had received the best possible care
  24     that she asked us whether she could use us as a contact
  25     should any parent of the Downs Heart Group be offered

   1     surgery at Bristol and be in two minds as to whether to
   2     take it, and whether we would be prepared to talk, to
   3     counsel, discuss surgery at Bristol with any other set
   4     of parents, prospective cases, and we said yes, we
   5     would, because we were so confident that David had been
   6     given the best possible care.
   7        I have to add, I am very grateful that we were
   8     never called on to do so.
   9   Q. She explained to you that the overall statistics in
  10     Bristol might not be so good because they were more
  11     willing to operate on Down's syndrome children than
  12     other units. Did you understand the logic of what she
  13     was attempting to explain to you?
  14   A. She said they would operate on children which other
  15     hospitals may not be prepared to take. I did not
  16     necessarily understand that to be necessarily all Down's
  17     syndrome children.
  18   Q. Is it right, then, would the implication of that be
  19     that the statistics might be affected by the fact that
  20     the results of the results of the unit might be affected
  21     by the fact that the unit was taking children who were
  22     regarded as being higher risk than other units would
  23     accept for surgery?
  24   A. Yes.
  25   Q. From what you then went on to say about the offer of

   1     help that Mrs Forsyth asked for and you were prepared to
   2     offer at that time, you made it clear that you were glad
   3     not to have been called upon to speak for the care that
   4     Bristol offered David.
   5        It is equally apparent, at the time you wrote to
   6     Mr Wisheart, you did not have any concerns or doubts
   7     about that. What is it that changed your impression,
   8     Mrs Burton, after David's death?
   9   A. We were satisfied, comforted, that David had had the
  10     best possible chance until we received a letter from
  11     a firm of solicitors in London who were acting for the
  12     Medical Council. This letter must have come, what,
  13     1997, completely out of the blue, asking us for
  14     permission to have David's medical records. When I rang
  15     the firm of solicitors to question why they wanted
  16     David's medical notes, because David had had AVSD
  17     surgery, and from what we had gathered from the media,
  18     it was arterial switch surgery that was being looked at,
  19     we did query why they wanted David's medical notes, and
  20     the solicitor informed us that it was not just arterial
  21     switch that was under investigation, but all of
  22     Mr Wisheart's AVSD surgery and that David was going to
  23     be one of the 29 cases that was going to be looked at by
  24     the General Medical Council.
  25   Q. As a result of that, did you follow the proceedings of

   1     the General Medical Council?
   2   A. Yes, we did.
   3   Q. And did that then lead to any concerns or doubts that
   4     you now have?
   5   A. What I asked the solicitor at the time was whether, if
   6     everyone was going to trawl through David's medical
   7     notes and discuss his case, however it was done, whether
   8     it was going to be done case by case or thematically,
   9     whether there was any way in which we could be told what
  10     the General Medical Council's view of David's surgery
  11     was. We were informed that this was not possible and
  12     the only way we could find out about comments on David's
  13     case was to ask for transcripts of the Medical Council's
  14     hearings, which we did. We received copies of all the
  15     discussions of the Medical Council where they related to
  16     David, and reading through them, and with our very
  17     limited medical knowledge, we decided there was enough
  18     in those medical notes to warrant an independent review
  19     of David's case.
  20   Q. Is it that which you would like the Inquiry to further
  21     undertake?
  22   A. Yes.
  23   MISS GREY: Thank you very much, Mrs Burton. I think the
  24     panel may or may not have further questions for you.
  25   THE CHAIRMAN: Mrs Burton, we do not have any questions, but

   1     there may be re-examination --
   2   MISS GREY: Could I then ask, if the panel have no
   3     questions, do you, Mrs Burton, have anything further you
   4     would like to add?
   5   MRS BURTON: There are two things, really. First of all, as
   6     regards organ retention, this is an issue that my
   7     husband and I feel particularly strongly about. It came
   8     as a devastating blow, to know that this had been done
   9     without -- even if our permission was not necessary,
  10     which in itself we find very surprising, but without our
  11     knowledge. We would hope that this issue is addressed.
  12        The second point is, we believed that David had
  13     been offered -- we had offered David the best possible
  14     chance for surgery. The conversation I had with a nurse
  15     that I met at the funeral of a little lad in the next
  16     village to us, a month before David came to Bristol for
  17     surgery, was that she questioned whether we should take
  18     David somewhere else. When I asked her why, she said
  19     that paediatric cardiac surgery was a speciality and
  20     that you could not be a specialist in adult cardiac
  21     surgery and paediatric cardiac surgery and we really
  22     ought to be thinking about taking him to another
  23     hospital. We did not. It never crossed our minds that
  24     a situation would be allowed to develop where, as
  25     I said, an acceptable standard of surgery was not being

   1     carried out. I think we both appreciate that, as in
   2     other professions, you are going to have degrees of
   3     competence. You are going to have excellent surgeons,
   4     you are going to have good surgeons, you are going to
   5     have very good surgeons, but surely, there must come
   6     a level where, if you fall below it, you are stopped,
   7     and you are stopped quickly until your position is
   8     reviewed, you are offered more training, and this
   9     appears not to be the case here.
  10   Q. Do you know the name of the nurse who spoke to you?
  11   A. No, I do not.
  12   Q. Do you have anything else you want to add, Mrs Burton?
  13   A. I do not think so, no.
  14   MISS GREY: Thank you very much.
  15   THE CHAIRMAN: Mr Lissack, forgive me, you were
  16     interrupted. Do you have any re-examination?
  17   MR LISSACK: I have none, thank you.
  18   THE CHAIRMAN: I am grateful. Mrs Burton, I can give you an
  19     assurance on the matter of organ retention and so on, we
  20     will be looking into that as part of this Inquiry. I am
  21     happy to be able to give that assurance. As regards the
  22     other matter you raised, clearly that is a theme which
  23     runs through and we will have to investigate it
  24     accordingly.
  25        Thank you very much for coming to talk to us this

   1     morning. I recognise it was not easy, but we are very
   2     grateful to you. If at any time there occurs to you
   3     anything else that you want to tell us, you may of
   4     course get in touch with us. We shall be here for
   5     a while, and we shall always be happy and contented to
   6     hear from you, in whatever form. Thank you for today.
   7            (The witness withdrew)
   8   MISS GREY: Chairman, I wonder if that is an appropriate
   9     moment to have a break. I suggest a quarter of an hour
  10     would be appropriate.
  11   THE CHAIRMAN: Thank you, yes. We will reconvene at 11.30.
  12   (11.15 am)
  13               (A short break)
  14   (11.38 am)
  15   MR LANGSTAFF: Sir, our next witness is Mrs Alison Thomas.
  16        Mrs Thomas, you know, I think, that we begin by
  17     taking the oath, so if you would not mind standing to be
  18     sworn.
  19          MRS ALISON RUTH THOMAS (Sworn):
  20            Examined by MR LANGSTAFF:
  21   Q. Mrs Thomas, you are Alison Ruth Thomas and you would
  22     prefer to be known in these proceedings as Alison?
  23   A. Yes.
  24   Q. We are going to talk about your son Dafydd. I apologise
  25     if I do not quite get the pronunciation right. I know

   1     you will forgive me.
   2        You are going to tell us, in the course of your
   3     evidence, about his birth on 14th April 1992, his going
   4     for an echocardiogram in Bristol under Dr Jordan on
   5     25th April 1992, an operation which was performed on him
   6     by Mr Wisheart on 21st May, because he suffered from
   7     a truncus arteriosus?
   8   A. Yes.
   9   Q. He had a homograft Rastelli type repair, and you are
  10     going to tell us about his life after that, until the
  11     age of 4, when sadly, he had a further operation in
  12     Wales and died?
  13   A. Yes.
  14   Q. That is what I am going to ask you about. Your
  15     pregnancy before Dafydd was born on 14th April 1992 was
  16     normal?
  17   A. Yes.
  18   Q. And it went to full term, did it?
  19   A. Yes, just over.
  20   Q. He was born at the Withybush Hospital in Haverfordwest?
  21   A. That is correct.
  22   Q. He weighed just a fraction under 8 pounds?
  23   A. That is right.
  24   Q. What was the first time that you became aware that there
  25     was anything amiss with Dafydd?

   1   A. As soon as he was born, the chord was around his ankle
   2     and over his shoulder and under his leg, so they took
   3     him off and sorted him out. Then he was snuffly that
   4     same day. Within 24 to 48 hours, the paediatrician that
   5     was based in the hospital then said he thought there was
   6     a problem with the heart, and he actually said what he
   7     thought it was, which subsequently was proven to be an
   8     accurate diagnosis.
   9   Q. And that was Dr Palit, was it?
  10   A. That was Dr Palit, yes.
  11   Q. He is the senior consultant paediatrician at Withybush
  12     Hospital?
  13   A. Yes.
  14   Q. So what he told you about it was what, and what do you
  15     recollect?
  16   A. He said that Dafydd had, he thought Dafydd's heart had
  17     one artery arising from it instead of two, but he really
  18     could not be sure, so it was generally referred to on
  19     the ward as a heart murmur, because they did not know if
  20     it was a big or a small problem which could be rectified
  21     fairly readily.
  22   Q. Because of what he thought the problem was, did he make
  23     arrangements for Dafydd to see --
  24   A. He made arrangements on our discharge for us to be seen
  25     by him and at the end of the week that we were

   1     discharged and by a visiting cardiologist -- I did not
   2     know his name at that stage -- who would be coming from
   3     Bristol, who turned out to be Dr Jordan. We never
   4     actually made that appointment, because when we went in
   5     to see Dr Palit at the end of the following week, Dafydd
   6     was in heart failure, so he was admitted to the local
   7     hospital straightaway.
   8   Q. That was on Friday, 24th April when he was 10 days old.
   9     You are looking at a diary?
  10   A. I did at this time of my life because I knew it was such
  11     a big thing happening to us, I kept a diary and records
  12     of everything that happened to myself, my family and
  13     Dafydd during the time we were in hospital.
  14   Q. Was Dafydd your second child?
  15   A. Yes. I have an older son called Rhys.
  16   Q. Not only did you keep a diary, but you took some
  17     photographs, I think?
  18   A. That is right. We took photographs. Once we came to
  19     Bristol and it was clear Dafydd was going to need an
  20     operation, we were told he would need a subsequent
  21     operation, and I decided it was certainly going to be
  22     easier for Dafydd to cope with an operation as a baby,
  23     because it was not going to affect him emotionally, and
  24     the family then were affected emotionally, and I decided
  25     if I took photographs, when it came to the time for the

   1     second operation, I would be able to show Dafydd these
   2     photographs throughout his life, so it would be part of
   3     his life and he would not be frightened when he had to
   4     go to hospital for the second operation.
   5        I decided I would keep this diary and keep the
   6     photographs as a record, and I knew that Dafydd was
   7     very, very ill and he may not make it, and I wanted to
   8     have as many memories as I possibly could.
   9   Q. We have copies of the photographs. I think you would
  10     like the panel to see those?
  11   A. Yes, I would.
  12   Q. We will have a look at those at a later stage.
  13   A. Yes.
  14   Q. So 24th April, heart failure, Dr Palit, and on
  15     25th April, as a result, transferred from Withybush to
  16     Bristol?
  17   A. Yes.
  18   Q. And the transfer was by ambulance car, I think, together
  19     with a nurse?
  20   A. That is right.
  21   Q. A male nurse?
  22   A. No, a female nurse with a male name.
  23   Q. Phil Higgins; that is why I asked.
  24   A. It is a female nurse.
  25   Q. You made a note of that. To pick it up in your diary

   1     and show what sort of record you kept in your diary, if
   2     we could have on my screen, please, W29, witness 29/18.
   3        At the top of the page, just enlarge that:
   4        "Saturday 25.4.92, nurse Phil Higgins accompanied
   5     us when we travelled by ambulance car to Bristol. We
   6     left at 9.15 and arrived at 12-ish. Dafydd was checked
   7     in and I was shown to my room right beside him. A nurse
   8     phoned to say I had arrived."
   9        These notes were obviously made up later, at the
  10     end of the day? When did you make your diary up?
  11   A. I went back to my room sometimes when Dafydd was asleep
  12     and jotted things down. If he was put under a new drug,
  13     I would maybe take the diary with me to the room and jot
  14     down the name of the drug and get it right, because
  15     I wanted to make it an accurate record. The other thing
  16     was, my husband was not there with me all the time, he
  17     would go home and look after my other son, so I wanted
  18     to be able to say to him accurately what was happening
  19     to Dafydd.
  20   Q. In your diary we see a number of references to somebody
  21     called "Split"?
  22   A. That is the nickname for my husband.
  23   Q. So you go to the Children's Hospital, you arrive at
  24     noonish. You are welcomed in by a nurse whose name
  25     I think you remember, Debbie?

   1   A. Yes.
   2   Q. Do you remember that because of your diary?
   3   A. I remember it because of her face, and I could not
   4     remember, I do not have her name down here in my diary,
   5     but I remembered her face and I have a photograph of
   6     her, and it was written down under the photograph.
   7     I just could not remember her name, it has been two
   8     years now and I could not remember it immediately, but
   9     having seen her picture, it was easy.
  10   Q. I think when you took the photographs, you labelled most
  11     of them?
  12   A. I did, yes.
  13   Q. And there are, as the panel will see, a number of
  14     photographs of the nursing staff, and that is
  15     a reflection, is it, of the degree to which you and they
  16     got on well?
  17   A. They supported me through what was at that time the most
  18     difficult time in my life, and they supported me like
  19     a family.
  20   Q. You saw Dr Jordan. Was this the first time you had seen
  21     him?
  22   A. Yes.
  23   Q. That was about 6 o'clock in the evening?
  24   A. Yes.
  25   Q. He did an echo scan?

   1   A. That is right. He brought the echo scan machine into
   2     the cubicle on the baby unit, and did the echo scan
   3     there.
   4   Q. You and he talked about what was wrong or might be wrong
   5     with Dafydd?
   6   A. Yes. He told me that -- he confirmed, it says here,
   7     "Our worst fears have been confirmed and he does only
   8     have one artery from the heart instead of two. He will
   9     have to have an operation", which was again something
  10     that were not sure of until that moment. We were told
  11     that if he could thrive on his medicines he would rather
  12     wait a month or two before operating, but we would be
  13     kept there for a while whilst they assessed Dafydd's
  14     progress. I also remember at the time Dr Jordan saying
  15     that Dafydd thought he was a frog, because frogs only
  16     have one artery coming from the heart, apparently, which
  17     I did not kind of like at the time, but I can see why he
  18     said it.
  19   Q. So he was putting it, was he, in a familiar way?
  20   A. Yes.
  21   Q. Which you did not respond to?
  22   A. I felt maybe at the time it was a little bit over
  23     familiar. It was such a terribly traumatic piece of
  24     news for me to receive, which -- that is on the side.
  25   Q. Just tell me, that day, obviously, you met Dr Jordan

   1     subsequently, but that evening, having met him and heard
   2     him to begin with this rather unusual analogy, how did
   3     you feel?
   4   A. What, after --
   5   Q. At the end of the consultation.
   6   A. Well, it was traumatic, you know. The first thing
   7     I wanted to do was phone my husband and explain to him
   8     what I had just had explained to me, you know, it had
   9     been hinted at before that the diagnosis was confirmed,
  10     Dafydd may need an operation, but now we knew he needed
  11     an operation, and the next question was, what sort of an
  12     operation? Would he thrive enough and become strong
  13     enough to take this operation?
  14   Q. On the Monday, 27th April, Dafydd was still not two
  15     weeks old, not quite. Did you see someone from the
  16     Heart Circle?
  17   A. Yes. Jean Pratton from the Heart Circle visited and
  18     introduced herself and had a chat about feelings. Her
  19     daughter had heart surgery when she was 9 and is now in
  20     her 30s. Jean Pratton was very supportive.
  21   Q. Did you find that helpful?
  22   A. I did, yes.
  23   Q. At some stage, did you manage to get hold of a book?
  24   A. I got a copy of a book called Heart Children, which was
  25     lent to me by Helen Vegoda, the cardiac counsellor at

   1     the Children's Hospital. I don't recall when I was
   2     introduced to Helen Vegoda but I know that it was she
   3     who lent me this book and told me where I could purchase
   4     one, which I did.
   5   Q. You bought the book. How early on was that? Was that
   6     before you saw Dr Jordan for the echocardiogram, or
   7     after?
   8   A. No, it was after I saw Dr Jordan. I would think it was
   9     probably around the same time as Jean Pratton visited
  10     me, you know. It had taken --
  11   Q. So probably just a couple of days after you had realised
  12     the worst?
  13   A. Yes.
  14   Q. You got the book in order the read up about Dafydd's
  15     condition?
  16   A. I read it from cover to cover, I do not know how many
  17     times, because you could not take it all in the first
  18     time. They actually had a little diagram there, which
  19     was a drawing of Dafydd's specific condition, truncus
  20     arteriosus, which I looked at time and time again, and
  21     flipped back to the picture of a normal heart. There
  22     were other chapters in there explaining what might go
  23     wrong in surgery, what drugs might be administered,
  24     before and after surgery, so it was a great help, a huge
  25     help.

   1   Q. On the Tuesday, the day Dafydd reached his second week
   2     of age, he was seen, you tell us in your statement, by
   3     four doctors?
   4   A. Yes.
   5   Q. You give their names: Dr Jordan, Dr Martin, Dr Joffe and
   6     Dr David Evans?
   7   A. Yes.
   8   Q. Three of those, we know, you may not I think have
   9     appreciated at the time, I do not know, were consultant
  10     cardiologists?
  11   A. I did not know their names at the time, but I have been
  12     able to put names to the faces subsequently.
  13   Q. Were they there to discuss Dafydd's condition amongst
  14     themselves, or with you?
  15   A. Well, no, I was always kept as part of the -- I was
  16     never asked to leave the room when the cardiologists
  17     came into the room. I did used to keep quiet whilst
  18     they were discussing, you know, the problems, but they
  19     would always turn to me at the end of their
  20     conversations and discussions and explain to me in terms
  21     that I would understand, what was going on. If there
  22     was nothing I understood, they always made it clear
  23     I could ask any member of the nursing staff, or ask them
  24     again.
  25   Q. So essentially, are you saying that they were in fact

   1     discussing things amongst themselves, but they were
   2     telling you what they had discussed, or the outcome of
   3     their discussion at the end?
   4   A. Anybody who has been in hospital knows when the
   5     consultants come into the room, you take a back seat,
   6     really, and let them get on with their work, and then
   7     they turn to you and give you, you know, a description
   8     of what it is they found that day, you know. I never
   9     felt I should butt in until they finished. I asked
  10     questions at the end and felt able and encouraged to do
  11     so, but I would not have dreamt of doing it until the
  12     time was right.
  13   Q. You have dated that 28th April?
  14   A. Yes.
  15   Q. You can, I think, be sure of that date, can you, if we
  16     just look at witness 29, page 21, rotate it, please.
  17     The entry for Tuesday 28th, can we enlarge that,
  18     please? Can we have that on the public screen?
  19        Here we have you in your diary, the third line
  20     down:
  21        "Four doctors came and one of them said ..."
  22        Those are the four doctors whose names you
  23     subsequently identified and have given us in your
  24     statement?
  25   A. Yes.

   1   Q. Can we put away that diary for a moment and if I could
   2     have a look on my screen at 441/23, what you are looking
   3     at -- I do not know if you have seen any of Dafydd's
   4     notes since?
   5   THE CHAIRMAN: There is an address there.
   6   MR LANGSTAFF: That is all right, it is an old address.
   7        Can you see it? What you are looking at is
   8     something that took place in fact the day before the
   9     meeting you have just described: Monday 27th April. The
  10     doctors present: Dr Jordan, Dr Martin, two of the
  11     doctors who came around the next day, Dr Wilde,
  12     Mr Wisheart whom you subsequently saw, Mr Shrieti.
  13        It deals with Dafydd: "The lad's condition is that
  14     he has responded well to Digoxin and diuretics. His
  15     present clinical condition is good. It is uncertain how
  16     long this shall continue and we have agreed that he is
  17     likely to need corrective surgery in between 1 to 3
  18     months from now. The timing will be determined by the
  19     evolution of his condition and by the availability of
  20     a homograft. Therefore I shall start looking for
  21     a homograft of suitable size in the very near future and
  22     I shall see the baby on Ward 37."
  23        Just noting that for the moment, when you saw the
  24     four doctors, Jordan, Martin, Joffe and Evans, did you
  25     know the next day that in fact the day before there had

   1     been a discussion to decide the future of Dafydd's
   2     surgery?
   3   A. No.
   4   Q. Going back to Tuesday the 28th, that appears to be the
   5     first time that you remember Dr Martin having come to
   6     look at Dafydd?
   7   A. Yes. Well, no, that is not -- no, because they would
   8     have been around every day. The doctors did their
   9     rounds every day, but that is the first time I noted it
  10     in my diary that there were four doctors. Maybe four
  11     doctors was an unusual amount to come around, but that
  12     is why I have noted it.
  13   Q. It is a matter of curiosity which the panel may wish to
  14     explore in the future, why there should be a meeting on
  15     the Monday to discuss a case but obviously a very
  16     high-level discussion at the bedside for some time on
  17     the Tuesday immediately afterwards.
  18        In any event, you were told Dafydd would need
  19     a homograft at that meeting, on 28th April?
  20   A. Yes.
  21   Q. How much did you feel you understood about the nature of
  22     Dafydd's condition?
  23   A. Well, I understood it well, because I had got hold of
  24     this book and I had seen it, so one of the nurses drew
  25     me a very rough diagram on a paper towel. I had the

   1     book as well, so I knew what the heart condition looked
   2     like, and why, you know, what the normal heart looked
   3     like.
   4   Q. If you can just help to explain that, I think you may
   5     really already have dealt with it. If we can have
   6     a look at your witness statement, page 29/4, it is
   7     paragraph 17; this is obviously looking a day later,
   8     a day after the meeting at the bedside, 29th April, you
   9     record there that Tessa, one of the staff nurses
  10     responsible for Dafydd's care, drew a simple diagram.
  11     Is that the diagram you are talking about, on the paper
  12     towel?
  13   A. Yes.
  14   Q. You explain how Dr Jordan had asked Tessa to return to
  15     you and re-explain?
  16   A. That is right. At all stages the cardiologists would
  17     explain in terms that I presume they hoped I would
  18     understand what was going on, and they always said, "If
  19     you are not sure, ask again, or ask one of the nurses".
  20     There was always a nurse present when they were giving
  21     very important information, you know, well, there is
  22     a nurse present on the ward round anyway, but they
  23     always made sure that the nurse could return to me at
  24     a later time that day, and he explained if I needed
  25     it -- it was a lot of information to take on board for

   1     somebody who is not used to that.
   2   Q. You say there that your head was swimming, the last
   3     sentence of the first paragraph, number 17. That was
   4     with everything happening so quickly, I imagine, and you
   5     having to come to terms with Dafydd's condition?
   6   A. Yes. I mean, you know, only two weeks previously I had
   7     been giving birth to what I thought was going to be
   8     a healthy second son and there was not a thought that he
   9     would not be. It is something that happens to other
  10     people and not you, you know.
  11   Q. You mentioned a second pair of ears there. Is that
  12     right? Was there someone else there with you, the
  13     second pair of ears, your husband with you?
  14   A. My husband was not with me then, Tessa was.
  15   Q. So was she an extra pair of ears, or more an extra
  16     mouth, as it were, repeating twice?
  17   A. She was an extra pair of ears, so she would hear with me
  18     what the doctors were saying, and then, when I want to
  19     ask her later on what was it that such-and-such had
  20     said, if I did not quite understand, she could
  21     re-explain to me. Obviously her medical knowledge being
  22     far greater than mine, she was a great help to me and
  23     she came back and sat with me, and you know, got me
  24     a cup of coffee, sit down and really made sure if you
  25     had any questions, any problems. Even if it was just

   1     a shoulder to cry on, they were there.
   2   Q. You saw Mr Wisheart, I think, on 30th April?
   3   A. Yes.
   4   Q. And he sat down with you on an evening ward round, about
   5     8 o'clock, and talked to you about Dafydd's problem?
   6   A. Yes.
   7   Q. Had you seen him before that?
   8   A. I had seen him in passing; I had not seen him
   9     specifically to see Dafydd, you know, I had not seen him
  10     in Dafydd's room. He may have called in there at some
  11     stage when I was not there, I do not know, but I had not
  12     been introduced to Mr Wisheart before that date.
  13   Q. On this occasion, he drew a diagram for you?
  14   A. Yes.
  15   Q. We can see that diagram because it is amongst the diary
  16     entries which you produced for us. I will come back to
  17     that, but he drew a diagram for you?
  18   A. Yes.
  19   Q. And he explained, did he, what the heart would be like?
  20   A. He drew a diagram of a normal heart and explained how
  21     a normal heart functioned. I have the copy of the
  22     diagram here.
  23   Q. I have now located it, 29/44. Shall we have a look at
  24     that, please? You are now looking on the screen at the
  25     normal heart?

   1   A. That is the normal heart, as Mr Wisheart --
   2   Q. The left-hand side is normal and he drew this, he would
   3     leave this with you so you would understand?
   4   A. That is correct, because, you know, I did human biology
   5     in school, but I had forgotten it all. I would not have
   6     known the pressures and chambers within the heart. He
   7     wrote all that down for me, which was the oxygenated and
   8     which was the unoxygenated blood and the pressures and
   9     that is the normal heart. Then at the bottom of the
  10     page he drew the heart that Dafydd had been born with.
  11   Q. And the B and the L: you understood what they referred
  12     to in the top diagram?
  13   A. Body and lungs.
  14   Q. And the numbers?
  15   A. Oxygenated and unoxygenated and the pressures within the
  16     chambers, 25 and 100 is the pressure within the
  17     chambers.
  18   Q. So we look down at the damaged heart. There he was
  19     explaining to you what the truncus arteriosus was, and
  20     what it looked like?
  21   A. Yes. On my diagram, most of it is drawn in pencil, and
  22     then the actual operation that was going to be performed
  23     on Dafydd is drawn in biro. That is the little
  24     insertion on the left there which you will see, if
  25     I hold it up for you to see. You can see that most of

   1     it is drawn in pencil, and this piece in biro. The
   2     pencil drawing was Dafydd's heart as it was, and the
   3     name of it, persistent truncus arteriosus, and
   4     basically, there was far too much of the pressure within
   5     Dafydd's heart and only the one artery going out of it,
   6     and what Mr Wisheart proposed to do was to put
   7     a homograft insertion in and a patch, which is the
   8     squiggly line there.
   9   Q. So he is showing the homograft there, the section which
  10     has 14 to 16 written across it?
  11   A. That is right.
  12   Q. Joining up with the pulmonary artery going to the
  13     lungs. He notes at the bottom:
  14        "If nothing done" and that is in a big box on the
  15     left-hand side -- can we scroll down a bit?
  16   A. If nothing was done, Dafydd's heart would fail and
  17     result in damage to the lungs. At the bottom, Dafydd's
  18     chances of surviving to 6 months old would be less than
  19     20 per cent.
  20   Q. In the middle of the page, "Operate"?
  21   A. "Operate" underlined, his chances would be under 50:50.
  22   Q. You go on, in your statement, to tell us that in fact
  23     Dafydd was the youngest truncus, so Mr Wisheart later
  24     told you, ever to have survived the operation?
  25   A. In his experience, yes.

   1   Q. When he gave you the chance of success at under 50:50,
   2     was that something that he had mentioned then?
   3   A. No.
   4   Q. Would it have made a difference to you if he had?
   5   A. No. Dafydd was a very, very sick little boy and if he
   6     did not have an operation, he was going to die. He had
   7     a less than 20 per cent chance of living to 6 months and
   8     my husband and I discussed it, that we wanted Dafydd to
   9     have a chance of life and he did.
  10   Q. Can we, please, have a look at medical record 1292/145?
  11     Can we move to the top right-hand corner, and enlarge?
  12        This comes from the nursing notes. Just one
  13     little point I want to ask you about. You have
  14     remembered, and recorded, the meeting with Mr Wisheart
  15     as being on Thursday 30th April. The nursing note has
  16     it recorded as 1st May. There is only a day's
  17     difference.
  18        "Mum seen by Mr Wisheart, condition and surgical
  19     risks explained."
  20   A. I have it down as 30th April and it says there, "Dad
  21     also seen by Mr Wisheart". I have that down as the next
  22     day.
  23   Q. They have got that down as the 2nd in the notes.
  24   A. Yes, because my husband arrived at 9 o'clockish, and he
  25     came up on the 1st.

   1   Q. He came up on the 1st and arrived 9 o'clockish in the
   2     evening?
   3   A. Yes.
   4   Q. He was seen on the 1st or 2nd by Mr Wisheart?
   5   A. The 1st I have down in my diary. I am going by what
   6     I have in my diary. My husband is nodding.
   7   Q. It may be a very tiny point, but is this, do you think,
   8     your diary being out by a day or the nursing records
   9     being made up a day later?
  10   A. I really do not know. I could not comment.
  11   Q. It has to be one or the other, does it not, unless
  12     Mr Wisheart saw you twice to explain?
  13   A. No, he -- well, he did see me twice. He saw me once on
  14     my own and offered to come back -- he asked me if I was
  15     married and I said yes -- or if I had a partner. I said
  16     yes. He said "Would you like me to come back and
  17     explain to him what I have just explained to you?" He
  18     left me with the diagram, and I said "Yes, please", and
  19     he said, "Well, I will do that for you", and it was the
  20     next day when my husband came up. I cannot comment as
  21     to why the date would differ.
  22   Q. It might well simply be that the nurse made it up on
  23     1st May, the day after; it may be that your diary is out
  24     by a day. It was just that that I wanted to explore:
  25     that there were not in fact two meetings with you on

   1     your own, the second meeting was with your husband?
   2   A. No, that was definitely the only meeting alone with
   3     Mr Wisheart, and then the one with my husband the
   4     following day.
   5   Q. You did not discuss with Mr Wisheart any other place at
   6     which the operation might be done?
   7   A. No.
   8   Q. And the reason you give for that is that Mr Wisheart
   9     instilled confidence in you?
  10   A. Yes, and we had been sent from Pembrokeshire, the bottom
  11     left-hand corner of Wales, which is a long way. Bristol
  12     is a big place with big hospitals, and competent
  13     surgeons. I feel that Mr Wisheart was the very best
  14     person to operate on Dafydd, and I still do.
  15   Q. So it was really a question of recommendation from
  16     Pembroke, the distance from Pembroke. What about
  17     Mr Wisheart himself, having met him?
  18   A. I thought Mr Wisheart was a lovely man. He had time, he
  19     was a gentleman. I considered him, although I am not
  20     a cardiologist or a paediatric cardiac surgeon, so
  21     I would not have known whether he was the most competent
  22     surgeon in Great Britain. Who would have told me? All
  23     I know is that he was the loveliest of men. He cared
  24     about Dafydd. When he came to see Dafydd, Dafydd was
  25     not just another baby in the bed, an interesting case;

   1     he was Dafydd, and he had care oozing from him. He was
   2     competent, and I trusted him. I totally trusted him.
   3     He drew me a diagram explaining everything in great
   4     detail, and I could not fault him. I was surprise when
   5     had I heard that other people were not satisfied with
   6     him.
   7   Q. You took a photograph of him, I think?
   8   A. I did, yes, towards the end of Dafydd's stay.
   9   Q. It may be easiest if I have this photograph passed to
  10     you, because there are a number. That is the photograph
  11     you took, I think?
  12   A. It is.
  13   Q. If that could be passed to the panel, so they can see.
  14        On that, you have written a description of
  15     Mr Wisheart. I cannot exactly recall --
  16   A. "A considerate and brilliant man", I think I have
  17     written, and I wrote that at the time.
  18   Q. That was going to be my first question. Was it a posed
  19     photograph in the sense you said "Can I just take
  20     a photograph of you with Dafydd?"
  21   A. Yes. He came around to see Dafydd. This was shortly
  22     before Dafydd's discharge from the Children's Hospital,
  23     and he called in one day to see Dafydd, and I said,
  24     "Would you mind if I took your photograph?" As I said
  25     before, I always intended showing these photographs to

   1     Dafydd so he would not be frightened of the second time,
   2     going into hospital, and I wanted to show him at the end
   3     of the day it is a team of people and I wanted to show
   4     him, you know, his team.
   5   Q. Was there anything in particular about Mr Wisheart that
   6     instilled confidence in you?
   7   A. Well, I felt he had a gentle manner, he was very
   8     well-respected, as I remember, on the baby unit. As
   9     I have said before, I am not a cardiac surgeon; I am not
  10     a cardiologist. I would not have known any more than
  11     any other parent going in there, blind, as it were, but
  12     he seemed to me competent, kind, considerate, he had
  13     time. That is as much as I can say.
  14   Q. One thing which Mr Wisheart did, having explained to you
  15     about the operation, was that he would need what he
  16     described as a homograft which involved a tube and valve
  17     of the correct size from some other child?
  18   A. Yes.
  19   Q. You tell us in your statement that if one was available,
  20     he would not want to leave the operation for too long,
  21     because otherwise another surgeon might want it?
  22   A. I suppose, in the blunt facts of it, that is something
  23     that has to be taken into consideration. I do not
  24     suppose there are many of these homografts available,
  25     and sad as it is, there are children who need them, and

   1     Dafydd was one of them.
   2   Q. So something of Dafydd's chances of success depended on
   3     competition between hospitals for the available --
   4   A. I would not say competition, but the availability of
   5     these tubes, I do not think it was a competition at
   6     all. It was the availability and, you know, you have to
   7     think if another parent is losing a child, they have to
   8     be asked if they are prepared to give up a part of their
   9     child whom they love for somebody else's child. That is
  10     a huge thing.
  11   Q. You were discharged back to Withybush on 3rd May, and in
  12     no doubt, as you made plain in your statement, about the
  13     seriousness of Dafydd's condition?
  14   A. That is right.
  15   Q. Then, on 8th May, you tell us about Dafydd's nasal
  16     gastric tube?
  17   A. Yes.
  18   Q. On 11th May when he is almost exactly four weeks old,
  19     you are telephoned to say the hospital wanted Dafydd to
  20     go back to Bristol?
  21   A. That is right.
  22   Q. Back he went on 12th May.
  23   A. No, not on the 12th. We were going to go on the 12th
  24     but there was no actual bed available on that day, so we
  25     went the following day.

   1   Q. You were told he was going to go on the 12th but
   2     something happened?
   3   A. Obviously there was an emergency admission at Bristol
   4     and there was no bed available for us, but he was in
   5     Withybush Hospital, my local hospital at that time, so
   6     it was not as if he was not in a hospital and he was not
   7     having care.
   8   Q. Your entry in the diary for the date of the 13th, 29/29,
   9     on my screen, please, the top half of the right-hand
  10     side and down a bit:
  11        "Split took me to hospital and we said our
  12     goodbyes once a bed had been confirmed with Bristol.
  13     Set off at 9.30ish, arrived at 12.30ish. Dafydd was put
  14     in an incubator for the journey. He got really sweaty
  15     and the journey took a lot out of him. The doctors
  16     checked him in and gave me room 2 in the new block.
  17     Went for x-rays."
  18        How did you know it took a lot out of him? How
  19     did it show itself?
  20   A. He was really hot and bothered when we got to the
  21     hospital, he had got too hot on the journey, and he was
  22     sweaty and, you know, heart babies sweat a lot. Dafydd
  23     was dripping, the poor thing, by the time we got back,
  24     so I know it had taken a lot out of him.
  25   Q. Were you in an ambulance?

   1   A. No, it was a car ambulance; it did not have a blue light
   2     or anything, but we were going along in a car
   3     ambulance. I sat with Dafydd, there was an incubator in
   4     the back and the nurse was with us as well: a driver,
   5     the nurse, ourselves and Dafydd.
   6   Q. And the nurse came from Withybush?
   7   A. That is right.
   8   Q. What means were there of keeping him cool during the
   9     journey?
  10   A. Well, what means are there for keeping any of us cool?
  11   Q. Just the usual means you would have in a car?
  12   A. Yes.
  13   Q. Although obviously he was in the incubator?
  14   A. Yes.
  15   Q. So you went to the Bristol Children's Hospital?
  16   A. Yes.
  17   Q. And you learned four or five days after you got there
  18     from, I think, Dr Martin, that a homograft had been
  19     found. 18th May is the date you are looking for.
  20   A. Yes. Dr Martin came round in the afternoon to say that
  21     the homograft has been found. I cried to think that
  22     some family had lost a child and the realisation that
  23     Dafydd's operation must be drawing closer.
  24   Q. The next day, 19th May, you saw Mr Wisheart again?
  25   A. Yes.

   1   Q. What did he say to you?
   2   A. Mr Wisheart came around and said that Dafydd had decided
   3     he was ready for his operation.
   4   Q. You are reading that I think from the diary?
   5   A. From my diary.
   6   Q. Do you have an independent recollection of it, or are
   7     you relying on your diary?
   8   A. I am relying on my diary, after all these years. I do
   9     remember Mr Wisheart using the words that it was
  10     Dafydd's decision that he was ready, but he was
  11     obviously unwell and he was not going to last the three
  12     months that we hoped he may last before he needed the
  13     operation, so it would be done this Thursday.
  14   Q. If you are reading from your diary, let us have a look
  15     at that. It is page 33. 29/33. Again, can we rotate,
  16     please, and enlarge?
  17        You see where we have capitals at "this Thursday",
  18     about the middle of the page, I just want to read that
  19     to you, and just explore for a moment what you were
  20     feeling at this time.
  21        "Mr Wisheart came around and said that Dafydd had
  22     decided he was ready for his operation. It will done
  23     THIS THURSDAY".
  24        That is in capitals.
  25   A. It was Tuesday when I wrote that and he was going in on

   1     Thursday.
   2   Q. Is that because it was all so sudden?
   3   A. Yes. I had known it was coming, but all of a sudden, it
   4     was this Thursday, and, you know, there was a lot of
   5     things that had to be done. I had to contact my husband
   6     and make sure he got up to the hospital in time, and it
   7     was frightening.
   8   Q. So that is why you say you are frightened?
   9   A. Yes.
  10   Q. And relieved?
  11   A. Yes, because this was it. This was Dafydd's chance.
  12     This was what we had been waiting for. This was the
  13     bridge, you know. Either we were going to get across
  14     the bridge and have a new beginning at the other side of
  15     it, or we were not. It was, in my mind, as simple as
  16     that.
  17   Q. You say there that you were going to see Helen Vegoda?
  18   A. That is right.
  19   Q. You must have already met her at this stage?
  20   A. Many times. I found her to be a great help. Although
  21     she always said that she could not provide me with
  22     medical counselling, she was there, and my Mum was not
  23     there, my husband was not there most of the time, I was
  24     hundreds of miles away from my home, and she was a huge
  25     support to me.

   1   Q. You must, I imagine, have told her what you felt like
   2     because of what you write in your diary?
   3   A. Yes.
   4   Q. That was a comfort to you, was it, to know that lots of
   5     other people would feel exactly that?
   6   A. Yes. She said I must do whatever I wanted to do with
   7     Dafydd so I do not wish I had done certain things. I am
   8     remember expressing -- not concern, but I asked her, "Do
   9     you think it would be silly if I told him (he was nearly
  10     five weeks old) about his Grandma, his Grandad, his
  11     Daddy, his brother and where we lived, because he did
  12     not know any of that, he could not understand me, but
  13     I wanted to tell him all these things, and she said "If
  14     you feel like that, you do it, and sing the nursery
  15     rhymes and the things that you want to do". I knew that
  16     this was Dafydd's chance. I knew that there were things
  17     that if I did not do them, then I would never get the
  18     chance again, so I had to take my opportunity.
  19   Q. The next morning you saw Dr Martin and a Dr Evans.
  20     Dr Evans was a more junior doctor, was he?
  21   A. Yes. We used to call him "David the blood doctor",
  22     I remember, because he always used to take the blood
  23     samples. He was a very nice chap.
  24   Q. We see at the end you took a photograph of him as well?
  25   A. Yes, I did.

   1   Q. You tell us in your statement that Dr Martin went
   2     through the operation that was to be done and in the
   3     same detail?
   4   A. Yes.
   5   Q. You signed the consent form?
   6   A. I did.
   7   Q. Can I please, on my screen alone, have -- there are
   8     a number of documents I am going to ask you to have
   9     a look at. 1292/18. This is made a few days earlier on
  10     the transfer from Withybush. It is a clinical note and
  11     you see the triangle at the top of the page, that means
  12     diagnosis. It is a Greek D:
  13        "Time 1 truncus. Short MPA, large RPA and LPA.
  14     Mild truncal valve regurgitation and gradient. Hoping
  15     for primary repair with homograft."
  16        So there is a description of the diagnosis which
  17     had been made, which you had been told about. That is
  18     what you understood the diagnosis to be?
  19   A. Still the words "short MPA, large RPA and LPA: truncal
  20     valve regurgitation", I am not a cardiologist, as I said
  21     before. I can see "truncus", yes, that ties in with
  22     what I was told.
  23   Q. The type 1 truncus, if you turn to page 134, if we look
  24     at the whole document first, please, we can have that on
  25     the screen. This was the consent form. Let us just

   1     enlarge the type of operation, investigation or
   2     treatment, as you did originally, please.
   3        "Type of operation, investigation or treatment."
   4        We can see there what is put in bold print:
   5        "Repair of type 1 truncus arteriosus, insertion of
   6     conduit homograft."
   7        And the signature of Dr Evans, the SHO, the date
   8     of it.
   9        If we scroll down to the very bottom, is that your
  10     signature, Alison?
  11   A. It is, yes.
  12   Q. So that is as was explained to you, and plainly,
  13     everyone thought it was a type 1 truncus.
  14        Were you ever told, did you ever understand, that
  15     the operation which in fact proceeded was for a type 2
  16     truncus?
  17   A. No.
  18   Q. Because someone else may have to explain how this came
  19     about at a later stage, I would just like to trace
  20     through some of the medical records and explore with you
  21     what you knew or did not, in part with a view to others
  22     giving an explanation at a later stage as to the
  23     significance or otherwise of the fact that your consent
  24     was obtained for one operation and an operation of
  25     a perhaps slightly different sort was in fact

   1     performed.
   2        If we can look, please, at 1292/141, the top
   3     right-hand side, a date prior to the operation and as we
   4     know, you have already told us about the
   5     echocardiogram. "Dr Jordan carried out an echo and
   6     diagnosis has been confirmed."
   7        So the diagnosis, truncus arteriosus, and as we
   8     have seen, type 1.
   9        If we can look, please, at 139, the same volume,
  10     it is a report on investigations into the heart and
  11     again, the history type 1 truncus, 13th May.
  12        138, the same on 28th May.
  13        If we could have a look at the note of the
  14     operation, which we will find at 144 to 145, 441, at
  15     144, if we just highlight what it says about
  16     "Operation":
  17        "Correction of persistent truncus arteriosus type
  18     II."
  19        If we go down to the bottom of the page on the
  20     operation note, the last paragraph:
  21        "The aorta was opened on its left lateral side to
  22     enable visualisation of the origins of the pulmonary
  23     artery. It was confirmed that it was type II truncus
  24     and the origins of the pulmonary artery were carefully
  25     excised."

   1        It may well be that others, I think, are going to
   2     suggest that Mr Wisheart was even more skilled than you
   3     had understood, because it may be that he was faced at
   4     operation with a condition that he had not entirely
   5     anticipated and was nonetheless able to deal with it in
   6     a way which proved successful.
   7   A. I cannot comment as to whether it was a type I or
   8     a type II truncus.
   9   Q. You can't. The reason I am doing this is to explore
  10     what you knew about it and what you have been told. May
  11     I say at once, this is not in any sense any criticism of
  12     Mr Wisheart, quite the reverse, if it proves to be the
  13     case?
  14   A. Mr Wisheart would not have diagnosed, anyway.
  15   Q. No. Exactly. It may be that we are told by experts
  16     that there is very little difference between the type I
  17     and the type II. It is really a matter which is laying
  18     it on the table for other people to comment on. I do
  19     not want you to be under any misapprehension as to the
  20     purpose of those questions. The reason for doing it now
  21     is because you are here and you can tell us what you
  22     were told and confirm what you were told, and that is
  23     all you know about it.
  24   A. Yes.
  25   Q. So I do not want you to think you are being used in any

   1     way to attack Mr Wisheart; as I say, quite the reverse.
   2        It may be a matter of importance for him. Others,
   3     again, will comment, that the observation is made that
   4     he may have had on occasions to deal with anatomy he had
   5     not entirely anticipated. That is the point. That is
   6     not his fault; it may be no-one's fault. Others will
   7     comment.
   8        In any event, you next saw Dafydd after the
   9     surgery on the ITU?
  10   A. Yes. We have missed a bit out, haven't we?
  11   Q. We will deal with the --
  12   A. We saw Dafydd after surgery on -- it was at 4.30.
  13   Q. I have taken you ahead --
  14   A. On 21st May.
  15   Q. I have taken you ahead because he had been at the
  16     Children's Hospital, had he?
  17   A. That is right.
  18   Q. He was taken to the Royal Infirmary for the surgery?
  19   A. Transferred to the BRI in the morning of the surgery.
  20     Having had his pre-med at the Children's Hospital, he
  21     was taken by the ambulance down to the BRI and straight
  22     into theatre.
  23   Q. You were concerned, I think, about the change from the
  24     one hospital to the other?
  25   A. Well, I had been in the Children's Hospital now for five

   1     weeks, or near enough five weeks, and had become quite
   2     comfortable with all the staff there and the
   3     surroundings, and having this huge operation happening,
   4     and going down to the hospital that I did not know. We
   5     had been taken down the day before by Helen Vegoda just
   6     to be shown around, but I did not know the staff and
   7     I did not know the hospital, so it was frightening.
   8   Q. You tell us in your statement that even before you got
   9     into the ITU, you were really quite distressed?
  10   A. This was the day before Dafydd's operation. This was
  11     when we were taken just to be shown the ITU. Both my
  12     husband and myself, I started crying as we walked
  13     towards the ITU and my husband actually passed out in
  14     the ITU because it was, the sounds, the smells, the
  15     sights, everything.
  16   Q. What about the sounds that upset you?
  17   A. The sounds? Well, in a huge building, I mean, we had
  18     come from the middle of nowhere, very countrified, and
  19     you go into a large building, I can hear it in here now,
  20     it will be air conditioning or whatever it is, and when
  21     you go into an intensive care ward you have all the
  22     machinery and equipment that is helping these people
  23     breathe, and you have alarms going off and it is
  24     frightening when you are not used to it. You do not
  25     know what any of them mean. In fact, when you do know

   1     what they mean, it is even more frightening.
   2   Q. What about the sights?
   3   A. There were older people there as well. I had a five
   4     week old baby who was going to be covered in the same
   5     amount of tubes as were covering, you know, a man in his
   6     60s. That was a frightening thought. There was a baby
   7     there whom we were introduced to, I think it was her
   8     first or second birthday that day, and we were
   9     introduced to her and her parents, and she was still in
  10     intensive care, so she was not able to speak, of course,
  11     but her parents offered encouragement to both of us.
  12   Q. You say two things that I just want to ask you a little
  13     bit more about. You say you remember being frightened
  14     by the adults on the ward as much as the machinery?
  15   A. Yes.
  16   Q. Secondly, you say in your statement you felt unhappy
  17     about Dafydd being on a ward with older people, because
  18     it seemed inappropriate to mix infants with such older
  19     people?
  20   A. Yes.
  21   Q. That is what you felt at the time, when you went to see
  22     the ward?
  23   A. Yes.
  24   Q. Is that what you still feel in retrospect, or not?
  25   A. I think I do, yes. I do not think it is nice for a baby

   1     who is born with a congenital heart defect to maybe be
   2     put next to somebody who was -- I speak as a recently
   3     reformed smoker -- who smoked 60 cigarettes a day and
   4     they are there through their own fault. Babies are
   5     sweet and innocent and pure, and, you know, old men are
   6     not, always.
   7   Q. So the mix was -- I understand entirely. You have seen,
   8     I think, what the Trust have to say, and they make the
   9     point.
  10   A. Yes.
  11   Q. You have a copy of it there, I think.
  12   A. I have, yes.
  13   Q. They say their policy was to move children's cardiac
  14     surgery to the Royal Hospital for Sick Children, but in
  15     practice, that policy was thwarted by lack of capital
  16     funding.
  17   A. I remember they talked about it while we were there,
  18     "Won't it be lovely when we get the new hospital
  19     built", but at that stage I think it was a pipe-dream.
  20     I do not know what has happened now.
  21   Q. The spirit was willing but the purse was weak?
  22   A. I think so, yes. The spirit was more than willing.
  23     I know the nurses in the baby unit all spoke about it.
  24     It was like a dream.
  25   Q. So they were looking forward to it at the time, because

   1     they presumably --
   2   A. It would make it so much easier -- a lot easier to cope
   3     with, for parents going through such a dramatic event
   4     with young children. I am speaking as if Dafydd did not
   5     have feelings. He was five weeks old, but he did not
   6     have emotional feelings, other than "Is Mummy there to
   7     cuddle me and do I have milk in my tummy", so I am not
   8     discounting that there might be other children 18 months
   9     upwards who did have feelings, but I cannot speak for
  10     them.
  11   Q. The purpose of you being shown the ICU was what, as you
  12     understood it? You had been taken around the day
  13     before, so that you were prepared?
  14   A. So that we were mentally prepared for what we would see
  15     the next day, when Dafydd came back from surgery. And
  16     I think it was a very good thing that we were shown in
  17     there, because it would have been even more traumatic to
  18     just go in there cold, as it were, and see your own
  19     child covered in all the tubes and with all the
  20     machinery around, with other people, and at least we had
  21     had a little chance to see what it was all about.
  22   Q. Not only were you able to see the equipment and the bed,
  23     but were you given assurances that the staff would do
  24     what they could to protect modesty and to separate the
  25     old men from the young babies?

   1   A. I do not remember them saying anything about making sure
   2     that Dafydd is not next to an old man, no, I do not
   3     remember that.
   4   Q. There were curtain tracks, were there?
   5   A. There were screens. As it happened, Dafydd had rota
   6     virus, so we were actually put into the -- there was
   7     a separate little unit for barrier nursing, so Dafydd
   8     was actually barrier nursed, but I did, when looking
   9     through to the rest of the ward, see that, you know, if
  10     the nurses or the doctors were working with a patient,
  11     screens were put around.
  12   Q. Let us come to the morning of the operation. You get up
  13     early?
  14   A. Very early. I do not think I slept anyway, but I got up
  15     very early, yes, 5.30.
  16   Q. You had had a room at the hospital, had you?
  17   A. Yes.
  18   Q. At the Infirmary?
  19   A. Yes.
  20   Q. And you dress up Dafydd in his operating gear, and
  21     I think you have a photograph of him, in fact, in his
  22     operating gown, as we shall see.
  23   A. That is right. The nurses, there were several
  24     photographs that we took that morning. The nurses
  25     actually down on the ITU at the BRI had said "Would you

   1     please try and bring a photograph of Dafydd in with you,
   2     so that we can see who it is we are nursing", but
   3     obviously, when they are all covered in tubes, you can't
   4     always see the child there, can you?
   5        So they did say to us, "Why do you not take
   6     a photograph and bring it in". The nurses at the
   7     Children's Hospital offered to take Dafydd's gastric
   8     tube out, and then we had some photographs taken as
   9     a little family. Then we got Dafydd dressed for his
  10     operation.
  11   Q. You are looking through the photographs, are you?
  12   A. There are lots of photographs. Photographs here of that
  13     morning.
  14   Q. I think it is probably going to be easiest for us to
  15     have a look at the photographs at the end, then all the
  16     photographs --
  17   A. It helps me to remember, when I am looking at them.
  18   Q. Did you both take Dafydd down to the operating theatre?
  19   A. Yes. I felt, as I had looked after Dafydd most of the
  20     time and he had come up the day before and I had already
  21     signed the consent form, I felt it was nice, and
  22     I carried Dafydd out of the Children's Hospital where he
  23     had spent so much time and Hugh carried Dafydd into the
  24     BRI, and into the anaesthetic room there, so we both had
  25     special moments, if they were going to be his last ones.

   1   Q. Was he asleep when you passed him over?
   2   A. No. He had had his pre-med then, but we went into the
   3     anaesthetic room and they proceeded to give him the
   4     anaesthetic. He was asleep by the time we came out with
   5     the nurse to be taken back to the hospital. To be
   6     honest with you, it is such a fuzzy time, I do not
   7     remember even how we got back up to the hospital.
   8   Q. Then you had the day of waiting, did you?
   9   A. Yes.
  10   Q. Where did you go?
  11   A. We just wandered aimlessly around Bristol. We went down
  12     to have these photographs developed and dropped them off
  13     at one of the photograph shops and wandered around
  14     Bristol. We had been told that we could phone --
  15     I cannot remember the time. It is written down here.
  16     I wrote bits in my diary actually that day -- I went to
  17     British Home Stores and everything. I wanted everything
  18     to be fresh on how I felt, so I wrote things down as
  19     I felt them. We knew then that, you know, it was now up
  20     to Mr Wisheart and his team, and all we could do was sit
  21     and wait.
  22   Q. You say in your statement -- let us have a look at
  23     witness 29/10: "The experience of having to travel with
  24     Dafydd from the Children's Hospital to the BRI on the
  25     morning of surgery was highly traumatic."

   1        The next sentence, you were being transferred from
   2     everything you knew and felt secure within the
   3     Children's Hospital to an unknown destination in terms
   4     of experience?
   5   A. Yes.
   6   Q. Is that the reason why you found the move traumatic?
   7   A. I was just taking my son down to have surgery that was
   8     either going to give him his life or take it. That was
   9     the most traumatic thing. Also, all the nurses on the
  10     baby unit came and said goodbye and good luck, and gave
  11     Dafydd a kiss, and I knew then, if Dafydd did not come
  12     out of the operation, we did not have Dafydd, and if he
  13     did, I did not have those nurses whom I felt understood
  14     everything we had been through up until then. As it
  15     turned out, the nurses in the BRI were absolutely
  16     wonderful, but at that time, I did not know that. You
  17     know, you like to be amongst familiar friends in times
  18     of stress, I think.
  19   Q. Suppose you had been in one of the same hospitals.
  20     Suppose the Children's Hospital was the same as the BRI,
  21     and the nurses in the ward had said goodbye to you, you
  22     would be expecting to have probably different intensive
  23     care nurses after the operation, would you not?
  24   A. Yes, but I can only speak from my experience. The ITU
  25     in the baby unit was just around the corner from the

   1     baby unit. The ITU was one side and the baby unit was
   2     the other side and you used to see the nurses walk
   3     backwards and forwards so you knew them, although you
   4     did not -- I know that had we gone to the ITU there, the
   5     baby unit nurses would have popped in and found out how
   6     we were doing and how everything went on. That is how
   7     it would have been.
   8   Q. The Trust, as you know, has made the point that the
   9     identity of the individual nurses caring for Dafydd
  10     would change before and after operation?
  11   A. Yes. With the situation that I was aware of at the
  12     Children's Hospital, the baby unit was just around the
  13     corner from the ITU, so the staff, although I had not
  14     spoken to them, I did not know them, I knew them by
  15     sight and they probably knew me by sight, so the baby
  16     unit staff would have come around to see us. They would
  17     have been there in the same building and they would have
  18     popped in.
  19   Q. You have mentioned that you were also saying goodbye to
  20     Helen Vegoda, the very last sentence of paragraph 50?
  21   A. Yes.
  22   Q. Were you able to contact her in fact from the BRI or
  23     not?
  24   A. I suppose I could have, had I wanted to, you know.
  25     I suppose I could have got in touch with her. I could

   1     not swear to it, but I do think she actually came down
   2     to see us, anyway.
   3   Q. May we look at paragraph 51, please? You told us that
   4     in the end you found the nurses on the intensive care to
   5     be every bit as good as the nurses in the Children's
   6     Hospital?
   7   A. Yes, I did.
   8   Q. Why, then, were you so pleased that Dafydd was able to
   9     go back from the intensive care to the Children's
  10     Hospital?
  11   A. It was a huge milestone. It was the milestone, not the
  12     transition from one hospital to the other, but it was
  13     the milestone, that he was well enough to go back up to
  14     the Children's Hospital, and, plus, you know, all the
  15     other children were there, all the mothers that I had
  16     met, all the staff that I had met, I knew everybody
  17     would be -- everybody likes a happy ending, and this was
  18     our happy ending, you know. We were going back up to
  19     the hospital and it was a huge thing.
  20   Q. When you come down to paragraph 52 and you describe the
  21     welcome that there was for Dafydd going back into the
  22     Children's Hospital, the very last sentence:
  23        "The actual transfer from the ITU to the
  24     Children's Hospital was not a traumatic experience, but
  25     obviously an unlooked for one."

   1        What did you mean by that?
   2   A. Being up at the Children's Hospital, surely it would
   3     make more sense for children to be treated at the
   4     hospital that they were admitted to, rather than being
   5     shipped, having had a pre-med even, by ambulance on the
   6     morning of an operation down to another hospital. In
   7     fact, Dafydd took rota virus down there with him and it
   8     could have closed the whole unit down, I believe.
   9     Certainly, in my opinion, it was an awful lot less than
  10     perfect.
  11   Q. I think what you are saying in paragraph 52 is that it
  12     is the reverse transfer. He goes down to the BRI, he
  13     stays there for intensive care and then comes back.
  14     When he comes back, you look as though you are saying
  15     that is an unlooked for experience, even though it was
  16     not traumatic?
  17   A. What I am trying to say there -- I am sorry,
  18     I misunderstood.
  19   Q. It is probably my fault.
  20   A. It would have been better, really, had we just been in
  21     the same hospital all the way through, anyway. There
  22     should have been no need to transfer from one hospital
  23     to another and then back again, you know, going all
  24     around the bushes.
  25   Q. You go on, as we can see from the next bold heading --

   1     I am not going to ask the screen to show any more of the
   2     statement at this stage -- to deal with the standard of
   3     post-operative care. If I can go through this
   4     reasonably quickly, you were delighted, I have no doubt,
   5     that Dafydd had got through the operation?
   6   A. Absolutely.
   7   Q. Dafydd was then in intensive care until he got strong
   8     enough to come back to the Children's Hospital?
   9   A. That is right.
  10   Q. You were with him most of the time, were you?
  11   A. As much of the time as I possibly could be, I was with
  12     him. Obviously, I did have to sleep, but if I was not
  13     asleep, I was with him.
  14   Q. You describe in your statement --
  15   A. Apart from one day when I went down for my other son's
  16     birthday.
  17   Q. You describe in your statement how you were well looked
  18     after by really everyone, I think, as you recall it?
  19   A. Yes.
  20   Q. Mr Wisheart came to see you and indicated that he was
  21     cautiously pleased, so no false hopes given to you. You
  22     describe the progress there was until he was fit enough
  23     to return back to the Children's Hospital.
  24        If I can just pick up your diary, 29/48, we are
  25     looking at an entry here for Wednesday, 10th June.

   1     Although you are looking it up in your diary, I would
   2     like you just to look at the screen, because you will
   3     see some names have been blacked out, for reasons of
   4     confidentiality. You say on 10th June -- at this stage
   5     he is back in the Children's Hospital, I think?
   6   A. That is right.
   7   Q. "Dafydd's putting on weight and managing his feeds
   8     orally. Still no sign of when they are going to close
   9     him up. He seemed to be shoved to the bottom of the
  10     operating list as there are so many emergencies coming
  11     in. I had to move rooms as there's a family in ITU who
  12     need my room."
  13   A. Yes.
  14   Q. Did you get a shade impatient they were not closing him
  15     up because of other demands on the hospital's time?
  16   A. No, I do not think I ever got impatient in the
  17     hospital. I would not have dreamt of it. If there were
  18     other more important emergencies that had been coming
  19     into the hospital that needed immediate attention,
  20     Dafydd had had his operation, and I was happy with that,
  21     and, yes, you know, there were times when I thought,
  22     "Gosh, when is he going to have his sternum closed",
  23     but it did happen eventually, and they could only do it
  24     when Dafydd was ready, they could not do it before.
  25   Q. So, really, it was a question of your being told why it

   1     was that Dafydd had to wait a bit. You are accepting
   2     that?
   3   A. Yes.
   4   Q. And generally, being grateful as you were for the chance
   5     that had been given to Dafydd?
   6   A. Yes.
   7   Q. So you tended, I have no doubt, to look at any delays
   8     and so on in that light?
   9   A. Yes.
  10   Q. What I would like you to do now is to take the
  11     photographs and I want you to show them all to the
  12     panel. But if you want to comment on any particular
  13     photograph, perhaps you would identify it and say
  14     something about it. By all means, move across. If you
  15     say something, if you speak up loudly the microphone
  16     will pick you up.
  17   A. All I can do is go through it as any proud mother
  18     would.
  19        This is me and Dafydd and my other son when Dafydd
  20     was a baby, 4th May. I have dated everything.
  21        This is the Withybush Hospital. This is me and
  22     Dafydd. This is the Children's Hospital.
  23        That is my Mum and my sister with Dafydd, again in
  24     Withybush Hospital.
  25        That is the other grandparents with Dafydd again

   1     in Withybush Hospital. Mummy and Daddy. There is his
   2     nasal gastric tube.
   3        This is Dafydd shortly before we were transferred
   4     back up to Bristol. This is the day we were supposed to
   5     be transferred to Bristol, and we were not because there
   6     was no bed available. I have got them muddled up a bit,
   7     because this is the day before Dafydd's operation.
   8        This is bath time, the day before his operation.
   9        This is the new ITU down at the Bristol Royal
  10     Infirmary.
  11        This is the physiotherapist and the nurses. These
  12     photographs are a bit muddled up, I am afraid. Again,
  13     this is in ITU. This is all back at the Children's
  14     Hospital. This is the Children's Hospital. This was
  15     another friend I had made and her baby, and they were
  16     ready to go home.
  17        This was awaiting transfer from Withybush up to
  18     Bristol. This was the patch test. This is another
  19     friend I made, and her son. And the nurses. This was
  20     the morning of the operation.
  21        This is Dafydd dressed for his operation and he
  22     had his pre-med.
  23   MRS MACLEAN: Before he went in the ambulance?
  24   A. Yes.  This was when all the tubes were taken out, so we
  25     were able to have some photographs taken dressed in his

   1     theatre gown.
   2        These were photographs, special last photographs
   3     we took before his operation.
   4        This is when he was in intensive care at 5
   5     o'clock.
   6        This is actually in the end room, the isolation
   7     unit, the barrier unit.
   8        Then the photographs go through day by day as the
   9     items of equipment and machinery were taken away.
  10        This is a photograph of Mr Wisheart, after
  11     Dafydd's sternum had been closed.
  12        This is where he was getting better in the ITU.
  13        This was before and after the sternum closure.
  14        These were the nurses in the kitchen.
  15        This is David Evans, Dr Martin, Dr Joffe,
  16     Dr Jordan.
  17        This is some of the nurses.
  18   THE CHAIRMAN: Thank you very much.
  19   MR LANGSTAFF: Alison, Dafydd, I think, continued to thrive
  20     and slowly came off his medication?
  21   A. Yes.
  22   Q. You went on having him checked every now and again by
  23     a cardiologist from Bristol?
  24   A. Very regularly. Not always in Bristol. After a while
  25     our care was actually transferred to Cardiff.

   1   Q. A cardiologist from Bristol?
   2   A. Yes.
   3   Q. And the cardiologist came out to Cardiff?
   4   A. Yes, but --
   5   Q. To see him there?
   6   A. To Withybush.
   7   Q. That was eventually Dr Stewart, was it?
   8   A. Yes, but he is from Cardiff, because our care was
   9     transferred from Bristol to Cardiff. I think Withybush
  10     stopped using Bristol hospital, I think when Dr Jordan
  11     retired, actually. I think that is when they
  12     transferred to Bristol, plus I do not think there was
  13     a paediatric cardiac unit open at the time of Dafydd's
  14     first operation in Cardiff anyway.
  15   Q. So the University Hospital of Wales opened a paediatric
  16     cardiology unit and Dafydd saw Dr Stewart there?
  17   A. No, he saw him at Withybush -- Withybush and there, yes.
  18   Q. You ultimately understood there had been a narrowing of
  19     the artificial tube which had been put in, and that the
  20     mitral valve leading from the heart to the body was
  21     leaking quite severely, so a further operation was
  22     required, and he had that operation but did not come
  23     through, as we know.
  24        One thing I want to ask you about, just in general
  25     terms. You had experience, then, of the way you were

   1     treated at, was it Cardiff where the operation was done?
   2   A. That is right, yes.
   3   Q. Treated by two separate hospitals in relation to
   4     Dafydd's care?
   5   A. That is right.
   6   Q. How did they compare?
   7   A. I would not compare hospitals. It is not like a hotel.
   8     You would not give them star ratings. I found all of
   9     the staff in all the hospitals that we have been to
  10     caring. I am sure that every nurse, every cardiologist,
  11     every surgeon, has given of their best. I am not going
  12     to ask any more than that of anybody. I am confident
  13     that Dafydd's life would not have been possible without
  14     the skill and dedication of the surgical team that dealt
  15     with him in Bristol. Equally, although not successful
  16     in Cardiff, I would not dream of saying that it was
  17     anything that they could have helped. Dafydd did not
  18     survive the second operation and that is something that
  19     will be with us for ever and there is nothing that we
  20     can do about it. I do not think there is anything that
  21     the surgical team could have done about it. I cannot
  22     really compare hospitals, only to say that -- I am sure
  23     that the care he received in both hospitals was the very
  24     best that could be given.
  25   Q. I have asked you a great number of questions, some of

   1     them going back over old memories. Is there anything
   2     you would like to add to what you have already told the
   3     panel?
   4   A. I cannot think that there is, other than that I hope you
   5     can listen with your hearts as well, to the stories that
   6     you are hearing. That is all I can say.
   7   MR LANGSTAFF: For my part, could I thank you very much for
   8     your evidence? The panel themselves may have some
   9     further questions.
  10             Examined by THE PANEL:
  11   MRS HOWARD: Mrs Thomas, I just have one question. You
  12     mentioned when Dafydd was going from the Children's
  13     Hospital to the BRI for his operation. Can you recall
  14     when he had his pre-medication and can you recall who
  15     gave him the pre-medication?
  16   A. No, I cannot recall who gave him the pre-medication.
  17     I know he had it before he went, because -- well, you
  18     can see from the photograph, he was kind of red and
  19     shiny. Dafydd never looked like that before, he was
  20     always a bit pale and grey and he was red and shiny on
  21     the morning of the operation.
  22   Q. So it was given at the Children's Hospital?
  23   A. At the Children's Hospital, his pre-med, yes.
  24   THE CHAIRMAN: There are no further questions from the
  25     panel, but is there any re-examination?

   1   MR SHARP: Sir, only one point.
   2            RE-EXAMINED by MR SHARP:
   3   Q. Alison, it is something that comes out to some extent in
   4     your statement, but does not come out in your evidence.
   5        You have been very full of praise for the nursing
   6     team, and you have referred to the team of the medical
   7     staff that cared for Dafydd. Did you feel that you were
   8     part of that team?
   9   A. I always felt included, when any part of Dafydd's care
  10     was discussed, or Dafydd's treatment. As I said before,
  11     I would sit and listen to everything that was said,
  12     absolutely everything. And they would always turn to me
  13     at the end and re-explain in terms I could understand
  14     what was going on, and I was always a part -- I was his
  15     biggest carer. I was his Mum and I was always kept
  16     aware of what was happening and what was going to be
  17     happening. I feel confident of that.
  18   Q. One of the photographs that you showed the panel
  19     a moment ago was of you bathing him on 20th May?
  20   A. Yes.
  21   Q. So when you say you were his biggest carer, you were
  22     actually a hands-on carer and encouraged to do that?
  23   A. Absolutely all the time, yes. I gave Dafydd all his
  24     tube feeds, after a while, once I had learned how to do
  25     it. The nurses showed me, you know, and made sure that

   1     I could do the feeds properly, and I was able to do
   2     that, even when he was in intensive care, I was able to
   3     do things, I was able to do his eye care and mouth care,
   4     which for me was very, very important, because I was not
   5     just sat by the wall watching, I was able to do
   6     something, little as it might seem, it was something
   7     I could do for him.
   8   MR SHARP: That was the next question I wanted to ask.
   9     Thank you very much indeed.
  10   THE CHAIRMAN: Thank you, Mr Sharp.
  11   MR LANGSTAFF: Thank you, Alison. I know your husband has
  12     sat there patiently listening to your evidence, and it
  13     may be in discussions afterwards you may think of
  14     something you could have added and want to add. If you
  15     do, please do not hesitate to write or telephone in, but
  16     one way or the other, to let the Inquiry know there is
  17     something to add.
  18   THE CHAIRMAN: I would repeat that also. It is very
  19     important for you to recognise that you can always get
  20     in touch with us again, should you wish to do so. Now
  21     Caroline will show you out. Thank you very much.
  22            (The witness withdrew)
  23   THE CHAIRMAN: May I say one word, Mr Langstaff? It will be
  24     clear to everyone that we are not adhering to our
  25     proposed and announced timetable and for that, I take

   1     responsibility and I apologise. I recognise it may well
   2     be tiring for everyone, but the reason is clear: we are
   3     currently here to hear from parents, and they must be
   4     allowed the time and the space to tell their stories at
   5     their own pace, given the extraordinarily emotional
   6     nature of the exercise. There cannot be any question of
   7     interrupting them, or far less, asking them to come back
   8     on another day.
   9        For that reason, we have not adhered to the
  10     timetable we announced. Once we move to other
  11     witnesses, I would hope we could adhere much more
  12     closely to that timetable and clearly we will keep the
  13     matter under review.
  14        What I propose, therefore, if I may, Mr Langstaff,
  15     is that we adjourn for 40 minutes, so that we can take
  16     an opportunity to have something to eat, and then we
  17     will, this afternoon, since the witness has been invited
  18     to come and talk to us this afternoon, we will hear the
  19     third witness.
  20   MR LANGSTAFF: That is at 2 o'clock, I think you are
  21     indicating, sir?
  22   THE CHAIRMAN: Thank you, yes.
  23   (1.20 pm)
  24            (Adjourned until 2.00 pm)
  25   (2.10 pm)

   1   MR LANGSTAFF: Sir, the last witness for today, this
   2     afternoon's witness, is Mrs Susan Darbyshire. Would you
   3     like to come forward?
   4        Mrs Darbyshire, as you have had explained to you,
   5     we begin with the taking of the oath. If you would not
   6     mind standing, you will be given the card to read the
   7     oath from.
   8           MRS SUSAN DARBYSHIRE (Sworn):
   9            Examined by MR LANGSTAFF:
  10   Q. Mrs Darbyshire, your name is Susan Darbyshire. You
  11     prefer to be known as Sue for the purpose of my
  12     questions?
  13   A. Yes, please.
  14   Q. You are going to tell us about the birth and the
  15     operations which your son Oliver had. He was born on
  16     28th October 1992. Shortly after that, he was diagnosed
  17     I think as suffering from a patent ductus arteriosus?
  18   A. Yes.
  19   Q. As well as a ventricle septal defect, AVSD, more than
  20     one suspected?
  21   A. Yes.
  22   Q. Initially, at any rate, a suspected coarctation of the
  23     aorta?
  24   A. That is right.
  25   Q. You are going to tell us, and I will take you through

   1     this in a bit more detail, about a banding operation to
   2     band the pulmonary artery, which he had at 10 days of
   3     age, on 7th November 1992, performed by Mr Dhasmana.
   4     You are going to describe how he suffered thereafter
   5     from a number of infections and had stomach surgery,
   6     which we will pass over fairly quickly because we are
   7     mainly concerned with hearts, here. That was in March
   8     1993. How, having spent most of his time in hospital in
   9     1993, he came back into the hospital for a catheter on
  10     11th May 1993, which found two large and one small holes
  11     in the septum of his heart. That was Dr Martin involved
  12     in that?
  13   A. That is right.
  14   Q. You are then going to tell us about the big operation he
  15     had at the age of 9 months, on 20th July 1993, and what
  16     has happened to him since.
  17        That is quite a list, I think. When Oliver was
  18     born on 28th October 1992, were there some problems at
  19     the birth itself?
  20   A. The birth itself was fine. It was not until Oliver
  21     actually appeared that we realised that the cord was
  22     wrapped tightly around his neck and there was a lot of
  23     congestion, bruising, swelling. He could not cry, could
  24     not open his eyes and he could not feed. He was a very,
  25     very poor feeder. We put all that down to the fact that

   1     the cord being wrapped so tightly around his neck, that
   2     was causing problems.
   3   Q. Did that change his appearance at all? Did you think
   4     that having had the cord around his neck --
   5   A. Only swelling and the fact that he could not open his
   6     eyes. Apart from that, he looked perfectly normal.
   7   Q. When was the first time you understood that there might
   8     be something wrong with his heart?
   9   A. On the day we were supposed to be taking him home. My
  10     husband was on his way to the hospital to pick us up.
  11     I got Oliver dressed, we were ready literally to go home
  12     and one of the nurses that had been taking care of us
  13     came to see me. She said she really was not happy with
  14     Oliver's feeding and the fact he was so sleepy and
  15     breathless all the time, and she really felt he should
  16     be looked over by a paediatrician, which she then called
  17     and they found the heart murmur straightaway and they
  18     felt he should be transferred to the specialist care
  19     unit where tests could be carried out. So we were
  20     literally on the way home when they found the heart
  21     murmur, and everything seemed to go crazy from then.
  22   Q. Can I have on the screen 1840/46. 2nd November, can you
  23     see what is there? I am going to read it through. You
  24     have already observed to me outside this chamber that
  25     sometimes doctors' writing is not easy to read. This is

   1     perhaps an example, is it not?
   2   A. Yes.
   3   Q. I think it says:
   4        "2nd November, 4.30 pm, asked to review, murmur on
   5     discharge examination. 9/7", that is 9 days old, then
   6     there is a sign of a boy. "Marked facial bruising at
   7     birth, improving. Not feeding terribly well. [Mum]"
   8     I think it says "Gets breathless". Then on examination:
   9     "Bruising, difficult to assess presence or absence of
  10     cyanosis", that is blueness. Was he perhaps a tinge
  11     blue, or might that have been the bruising from birth?
  12   A. From the neck down he looked perfectly all right, but he
  13     was black, blue, green, every colour imaginable from the
  14     neck up. It was impossible to tell. He was also very
  15     puffy, his testicles and the soles of his feet were very
  16     puffy and they were concerned about that as well.
  17   Q. Then it talks about tachypnoea, which is rapid
  18     breathing, and tachycardia, which is rapid heart rate.
  19     You knew about that, did you, at the time?
  20   A. Not at the time, no.
  21   Q. "With a prominent cardiac" -- and I am afraid I cannot
  22     quite get the next word.
  23   A. No, I cannot.
  24   Q. Can we scroll down, please? Then we have "IMP", which
  25     stands for impression. It is what the doctor thinks

   1     might be the problem. What is actually put is:
   2        "CXR [chest x-ray], query cardiomegaly [large
   3     heart] and admit and check essentially the gases, query
   4     cardiac echo [the heart murmur]. Apparently some
   5     concern re scan, antenatally."
   6   A. That goes back to when I think I was 18 weeks pregnant
   7     when I went for a scan and they could not find all the
   8     chambers of the heart. They were really concerned about
   9     that, so I had to go back four weeks later for a scan
  10     purely of the heart. They did find all chambers and
  11     they assured us that there was nothing wrong with
  12     Oliver, that everything was in perfect condition. We
  13     were told afterwards that what was actually wrong with
  14     Oliver would not have shown up on that scan anyway.
  15   Q. This was at the Bristol Maternity Hospital?
  16   A. Yes, at the BMH.
  17   Q. So with those problems beginning to be identified, you
  18     were taken with Oliver, were you, to have some tests
  19     done?
  20   A. He was transferred straight to the special care baby
  21     unit at the BMH: we were literally ready to go home, the
  22     case was packed, Oliver was dressed, I was dressed, and
  23     then we had this bombshell dropped on us that he
  24     definitely had a heart murmur and they needed to do
  25     extensive tests, and, "We are very sorry but he will not

   1     be going home."
   2   Q. So the next day, did you see Dr Martin, the
   3     cardiologist? It would be Tuesday, 3rd November 1992.
   4   A. Yes, we did.
   5   Q. He performed an echocardiogram?
   6   A. Yes.
   7   Q. And you say in your statement -- I am not going to ask
   8     for it to go up on the screen, but you tell us that scan
   9     showed that the patent ductus had not closed and that it
  10     was larger than usual and the various other defects that
  11     we have already identified?
  12   A. They were not too sure what other defects there were,
  13     but they knew there were other problems. Dr Martin said
  14     that they would try Oliver on a drug that may hopefully
  15     close the ductus, but he did not hold out much hope for
  16     that. If that did not work, then the alternative was to
  17     operate.
  18   Q. So he talked to you at the time of doing the
  19     echocardiogram, did he?
  20   A. Yes.
  21   Q. Did he explain what was wrong with Oliver to you?
  22   A. He explained as much as he knew at that time, with the
  23     results of the echo. Yes, he did, yes.
  24   Q. Do you have any medical background yourself?
  25   A. No.

   1   Q. Did you understand what he was saying?
   2   A. No, at the time I did not. I did not have a clue. All
   3     I knew was that we were supposed to be taking Oliver
   4     home, there was something drastically wrong with him,
   5     and I am afraid my husband said more than I did at the
   6     time.
   7   Q. It was the two of you there together, so one of you
   8     could talk to the other afterwards, just to go back over
   9     what Dr Martin had been saying?
  10   A. Yes.
  11   Q. And you did that, I am quite sure?
  12   A. Oh, yes.
  13   Q. What happened next? That was the Tuesday. Did Oliver
  14     stay in hospital?
  15   A. Yes, he did. He was kept in the Special Care Baby
  16     Unit. I was still actually up on the ward, on the
  17     postnatal ward, and they moved me to a side room, and my
  18     husband stayed with me then, until we actually went to
  19     the Children's Hospital on the Saturday for Oliver's
  20     operation.
  21   Q. Between the Tuesday and the Saturday, the Thursday, you
  22     tell us in your statement, at lunchtime the surgeon
  23     arrived and you missed him because you had gone out to
  24     have some lunch?
  25   A. Yes. He came back to see us around teatime. He came to

   1     see us again. We were frightened to go off the ward
   2     then, we made sure we were there so we would not miss
   3     him again and that was the first time we met
   4     Mr Dhasmana, then.
   5   Q. That was Mr Dhasmana. Can we have a look, please, at
   6     1840/51? At the very bottom of the page, the far
   7     right-hand side -- I am sorry, this is not going to be
   8     easy for you to read when we get there. Can we
   9     highlight the yellow to see if it makes it bolder, and
  10     enlarge it, please. What you are looking at, as you
  11     probably gathered, is the corner of a doctor's set of
  12     notes. It has 4-11-92 on it, the day before the
  13     Thursday, the Wednesday, "Echo as before. No evidence
  14     of aortic obstruction. 2 VSDs, large PDA."
  15        Just to explain that, there was a second
  16     echocardiogram, was there? Do you remember that?
  17   A. No, I do not.
  18   Q. You do not?
  19   A. No.
  20   Q. In any event, the person who took it, because we have
  21     all reviewed it, he seems to think that the aortic arch
  22     does not have an obstruction, but there were two holes
  23     in the middle of the heart and a large ductus, which is
  24     something that would otherwise close at birth.
  25   A. They could not be sure about the aorta. They said they

   1     could not actually be sure about that until they had
   2     Oliver in the theatre.
   3   Q. If we go to 1840/52, it is the same date --
   4   A. I am sorry, I said that on the day that we missed
   5     Mr Dhasmana, he did say he would come back to see us,
   6     but it was not actually that day, it was the
   7     anaesthetist that came to see us on that day. We did
   8     not actually see Mr Dhasmana until the Friday.
   9   Q. I just want to read this through with you, so we know
  10     what was happening so far as the doctors are concerned
  11     and see how much of that you understood at the time.
  12        The echo shows large PDA [patent ductus] and two
  13     [I will call them small holes --
  14   A. They were quite large, actually.
  15   Q. "There is no evidence of arch obstruction, but plan
  16     would be to ligate PDA [tie off the patent ductus] and
  17     measure pressures, and [something] do afterwards."
  18        Then it goes on to deal with the details of the
  19     plan.
  20        I want to ask you about the very last sentence of
  21     that:
  22        "To go to BCH ITU post post-op."
  23        That was in the doctor's mind at the time, that
  24     Oliver would go to the ITU at the Children's Hospital
  25     after the operation?

   1   A. Yes.
   2   Q. Was that what you understood at the time, or not?
   3   A. Yes, we were told that, yes.
   4   Q. You were happy with that?
   5   A. Yes.
   6   Q. Do you know why it was decided that your son would go to
   7     the Children's Hospital, because the operation was going
   8     to be done at the Infirmary, was it not?
   9   A. Not the first operation. Mr Dhasmana operated on Oliver
  10     at the Children's Hospital the first time round, when he
  11     was 10 days old.
  12   Q. So you saw Mr Dhasmana, you have told us, on the
  13     Friday. How did the discussion go?
  14   A. It went very well. I came out of the discussion
  15     understanding a lot more than before I went in. He told
  16     us exactly what he would be doing to Oliver. He said
  17     that he could not be certain about the coarctation of
  18     the aorta, but we would be asked to sign consent forms
  19     should he find that, you know, that we were happy for
  20     him to put it right.
  21        The whole meeting went fine. He told us
  22     everything we wanted to know. He explained everything.
  23     He drew us diagrams as well as giving us printouts of
  24     the problems that Oliver had, and we were really, really
  25     happy the way things went.

   1   Q. Did you sign the consent form on that occasion?
   2   A. Yes, because it was actually the day before the
   3     operation, so I think it was myself that signed.
   4   Q. Let us have a look at that consent form, 1840/469.
   5        Let us focus on the part that is on the screen at
   6     the moment. This is for the operation on the next day.
   7     Just reading what it says, there are two different
   8     handwritings. The first is "ligation of the patent
   9     ductus arteriosus", and then a different handwriting,
  10     which I think may be Mr Dhasmana's, but you can tell me
  11     if you recall anything about how the different
  12     handwriting comes to get on it?
  13   A. No, I cannot.
  14   Q. "Query pulmonary artery band" and two queries for
  15     a "coarctation repair"?
  16   A. Yes.
  17   Q. There are two different signatures for the doctor. One
  18     is Dr Cale or Cave, who is a senior house officer?
  19   A. I do not recognise any of those names. I was so
  20     frightened about what was going to happen to Oliver.
  21   Q. Mr Dhasmana obviously has countersigned. When you
  22     signed the form, do you remember there being another
  23     doctor there, or not?
  24   A. No, I do not think there was.
  25   Q. It may be while you were there, Mr Dhasmana wrote

   1     a couple of extra things on the form, because you were
   2     telling us he said "If we find --
   3   A. That was about the aorta. He said he would obviously
   4     need our permission if he found that problem during the
   5     course of the operation, and we just said "We give you
   6     a free licence to do whatever you feel is necessary".
   7     We put Oliver in his hands and we told him to do the
   8     absolute best he possibly could. Whatever he found, if
   9     he could put it right, to do so.
  10   Q. Again, it was the idea that there may be a problem with
  11     coarctation, no-one quite knew, but they would have to
  12     find out?
  13   A. No-one was sure about that.
  14   Q. Did you ask him at all "Why exactly is the surgery
  15     necessary?"
  16   A. He told us that if we did not go ahead with the surgery,
  17     then Oliver would just not survive. It was as simple
  18     and as plain as that. He had to have the banding
  19     otherwise he would not thrive, he would not grow, he
  20     would not be strong enough to have the holes closed
  21     over. Hopefully at 18 months old. There was no two
  22     ways about it, he had to have the surgery.
  23   Q. So you spent some time with Mr Dhasmana, then?
  24   A. Yes.
  25   Q. Roughly how long?

   1   A. Gash, it was a good hour. It must have been at least an
   2     hour.
   3   Q. And that was on the ward or a side room?
   4   A. No, we went into a little side room, actually down on
   5     the Special Care Baby Unit.
   6   Q. After that you went back to Oliver?
   7   A. Yes.
   8   Q. Did anyone, when you went back, give you some
   9     reassurance?
  10   A. Yes, one of the nurses actually assigned to taking care
  11     of Oliver. We must have looked really frightened and
  12     she just assured us he could not be in better hands;
  13     Mr Dhasmana was one of the best surgeons and everything
  14     would be okay. He was in really good hands. She did
  15     help to reassure us.
  16   Q. So on the Saturday he went across the road to the
  17     Children's Hospital for the surgery?
  18   A. Yes, which was scheduled for 9 o'clock in the morning.
  19   Q. Did you go with him to the operating theatre?
  20   A. Yes.
  21   Q. When he went in for the operation, was he awake or
  22     asleep?
  23   A. No, he was awake. He was wheeled into the
  24     anaesthetist's room, and we went out to stay with him
  25     until he was actually asleep.

   1   Q. So you saw him asleep before he went into the operation?
   2   A. Yes.
   3   Q. Did that comfort you?
   4   A. Yes, it did. He was peaceful.
   5   Q. So then you waited?
   6   A. We waited.
   7   Q. And you waited at the Maternity Hospital, at the
   8     Children's Hospital?
   9   A. No, we felt as if we had finished with the Maternity
  10     Hospital. We had been told Oliver was not going back
  11     there afterwards, it was definite he was going to ICU at
  12     the Children's Hospital. We had said our goodbyes and
  13     thankyous to the Maternity Hospital and just wandered
  14     around the Children's Hospital basically. We went into
  15     town. I cannot remember now. I know we drank endless
  16     cups of coffee and waited and waited. That was all,
  17     because every time we went down the stairs we had to
  18     pass the theatre where Oliver was and we had the
  19     temptation to go in and drag him out.
  20   Q. You eventually heard that the operation had been
  21     successful?
  22   A. Yes.
  23   Q. Was it explained to you essentially what had happened at
  24     the operation?
  25   A. It was explained that the operation went very well;

   1     there were no great surprises, although Mr Dhasmana did
   2     say that Oliver kept them on their toes. We did not ask
   3     what he meant by that, I do not think we really wanted
   4     to know.
   5   Q. Was that in response to a question from you?
   6   A. No, my husband actually said "Did Oliver behave
   7     himself?" because he would always say to Oliver or me,
   8     when he had surgery, "Do not do anything silly, make
   9     sure you wake up afterwards". He just said to
  10     Mr Dhasmana, "Did Oliver behave himself?" and he just
  11     said "Let us say he had us on our toes". I was too
  12     afraid to ask why.
  13   Q. So he may have meant everything or nothing by it?
  14   A. Yes, it might just have been a joke, I do not know.
  15   Q. In any event, there he now was in the intensive care
  16     unit of the Children's Hospital?
  17   A. Yes.
  18   Q. What can you say about the care that he had there?
  19   A. I could not fault it. We had already been taken over,
  20     I think it was the Friday before the operation. We were
  21     taken over to the ICU and we were introduced to the
  22     nurses that would be taking care of Oliver and we were
  23     shown all around the baby unit where Oliver would
  24     eventually go after being transferred from ICU. We were
  25     shown photographs of what Oliver would look like with

   1     the tubes in place and plasters all over him, and
   2     tubes. We were even shown a dummy of a dolly with
   3     a ventilator. When we got there, I cannot fault them at
   4     all. They were really marvellous.
   5   Q. And you saw the doctors regularly, did you?
   6   A. Yes; twice a day. There was a ward round in the morning
   7     and a ward round early evening.
   8   Q. Did you meet someone at some stage called Helen Vegoda?
   9   A. Yes.
  10   Q. Tell us about her.
  11   A. We did not actually meet Helen until the Monday, because
  12     she only worked from a Monday to Friday, so we were on
  13     our own with the nurses, basically, over the weekend,
  14     but Helen came and introduced herself to us as soon
  15     after 9 o'clock as possible on the Monday morning, and
  16     from then on in, she was always there, always available,
  17     always around. She was really really supportive.
  18   Q. Eventually, on Friday 20th, you were told that you could
  19     take Oliver home. It is moving ahead a little bit,
  20     because you set out everything that happened in your
  21     statement.
  22   A. That is right, yes.
  23   Q. We can read that for ourselves.
  24   A. Yes.
  25   Q. And you can take him home with the feeding tube in his

   1     nose?
   2   A. The nasal gastric tube.
   3   Q. You wanted to do it?
   4   A. We had three other children at home, our next was only
   5     18 months and did not understand what was going on, so
   6     we were confident enough. We were allowed to take him
   7     home as long as we did not mind, if the tube should fall
   8     out, we had to take him straight back to the hospital
   9     for a new one to be fitted.
  10   Q. There he is at home and the next occasion he goes into
  11     hospital, I think we have already mentioned, is the
  12     January of the next year. He is now just two months old
  13     and he suffered from a chest infection?
  14   A. Yes, he suffered very badly from bronchiolitis.
  15   Q. He went into hospital and spent the next three months
  16     there?
  17   A. 12 weeks, yes.
  18   Q. You tell us at some length the treatment that he had
  19     there, and again, you praise the treatment that he had,
  20     and make the point, I think, that as one of the
  21     consequences of that treatment, he had a feeding tube
  22     inserted?
  23   A. Yes. Oliver had always fed really badly orally, and
  24     after his first operation, he had an infection of the
  25     nostril where the ventilator tube was placed. That

   1     nostril had almost closed over so he only had one
   2     nostril working. When he had bronchiolitis, it was
   3     really difficult to feed him, because obviously we could
   4     not get a tube passed down the blocked nostril and he
   5     needed the other one to breathe. Eventually, he was
   6     fitted with a gastrostomy tube which helped him to
   7     thrive and gain weight. That was after 12 weeks in
   8     hospital and lots of tests.
   9   Q. He comes home and then very quickly, after another three
  10     days or so, has to go back in again?
  11   A. Yes.
  12   Q. And that was because he was showing signs of diarrhoea,
  13     I think?
  14   A. Yes. Nobody ever really got to the bottom of what was
  15     wrong with him. They felt it was some sort of gastric
  16     bug, but nothing ever grew from what they had taken from
  17     him. It was a complete mystery. That was the time that
  18     we really did come close to losing him, for no apparent
  19     reason. It started with diarrhoea and the next thing he
  20     was in the ICU being ventilated again.
  21   Q. Whilst he was in on that occasion, did you have another
  22     echocardiogram, just to check?
  23   A. No. I do not think so. I do not recall that. It is
  24     possible he may well have done, because he was seeing
  25     Dr Martin on a regular basis anyway, even though he was

   1     not in there for a problem of that nature, he was still
   2     on Dr Martin's ward list, still on his rounds in the
   3     mornings on a regular basis.
   4   Q. At that stage, what did you know about the future so
   5     far as the heart was concerned?
   6   A. As far as we were concerned, Oliver's surgery to close
   7     the holes and take the banding off and repair all the
   8     problems would not actually happen until he was 18
   9     months old. They said 18 months to two years, the fact
  10     they had done the banding, that should buy him time to
  11     thrive, gain weight and get strong enough to go through
  12     the major open heart surgery.
  13   Q. You describe the problems that you had in pages 9 and 10
  14     of your statement. I am not going to ask you to read
  15     them out, because as I have indicated, we can see that.
  16     You know that the main focus of the panel is obviously
  17     on the heart surgery?
  18   A. Yes.
  19   Q. Can we then move forward in time to 11th May, when there
  20     was a catheterisation. I think you will find it at the
  21     top of your page 11.
  22        It was decided, was it, that Oliver was now going
  23     to be a candidate for surgery rather sooner than you
  24     first thought?
  25   A. Yes. He was not really doing all he should have been

   1     doing. Oliver never did. He seemed to make the rules
   2     up as he went along and the fact that he now had the
   3     gastrostomy in place, he was still being force-fed. He
   4     suffered from a very bad reflux problem and he would
   5     regurgitate everything he was given, so when the
   6     gastrostomy tube was put in place, major surgery was
   7     also done to tighten the oesophagus, so he could not
   8     physically be sick, so he was really now beginning to
   9     thrive; he was really gaining weight. That, in effect,
  10     undid the good Mr Dhasmana had originally done by
  11     putting the banding in place. He was gaining too much
  12     weight and his heart could not cope with it. It was
  13     just a vicious circle.
  14   Q. Can we have a look, please, at 1840/435? If we take it
  15     up the page a bit, this is a diagram which was completed
  16     at the time of or just after the catheterisation on
  17     11th May 1993. I do not know if you saw this diagram or
  18     one like it at that time, or round about that time. Do
  19     you recollect?
  20   A. No, I do not.
  21   Q. In that case, I am not going to ask you anything about
  22     the diagram; that is for others to explain.
  23        As a result of the catheterisation, what did you
  24     believe, or understand, to be wrong with Oliver's heart?
  25   A. Dr Martin said that no surprises had turned up. Things

   1     were as he expected. He would send the findings to
   2     Mr Dhasmana and we would be hearing from him shortly.
   3     That is basically what happened.
   4   Q. Did he say anything about the holes in the heart
   5     themselves?
   6   A. He said there were two large holes and there was one
   7     small hole, and he would send the findings to
   8     Mr Dhasmana.
   9   Q. So Oliver came home a couple of days after that,
  10     13th May we are now at. What happened after that?
  11   A. He just started to go downhill really fast. He was
  12     always clammy, cold, sweaty. We were getting really
  13     concerned about him. His drugs had changed. He was
  14     given another diuretic. He was improving slightly but
  15     he was still not picking up.
  16        Then we had the appointment come through for
  17     Oliver to go and see Mr Dhasmana in Outpatients so we
  18     had a feeling that surgery was more or less imminent.
  19     It was going to be a lot sooner than expected.
  20   Q. In part, you thought, because of the way Oliver was
  21     going downhill?
  22   A. He was really not coping. He really looked deathly ill
  23     all the time.
  24   Q. By "deathly ill" what can you say? Was his skin a bit
  25     blue, or ...

   1   A. He was clammy, sweaty. You could not pick him up, prop
   2     him up, he would break out in a sweat. The feeding
   3     would go atrociously and we had the gastrostomy tube in
   4     place, the retching and gagging, which he had always
   5     done, everything was escalating, getting worse. The
   6     appointment to see Mr Dhasmana came at a really good
   7     time.
   8   Q. Can I have a look on my screen, please, at 1840/0399?
   9     It is a letter dated 2nd June 1993, just below the
  10     address, please.
  11        It is addressed to Dr Martin and it is from
  12     Mr Dhasmana, so it is 2nd June 1993, from Mr Dhasmana to
  13     Dr Martin.
  14        It says:
  15        "Further to our discussion regarding Oliver in the
  16     joint meeting, I have seen him with his parents in my
  17     clinic on 2nd June 1993."
  18        This rather bears out your feeling that
  19     Mr Dhasmana had seen you as a result of conversations
  20     about the need to do something for him?
  21   A. Yes.
  22   Q. "As you know, he is now seven months old and weighs
  23     around 6.64 kgs. He has multiple VSDs and underwent
  24     pulmonary artery banding and ductus ligation during
  25     infancy. He continues to have problems with the heart

   1     failure and recent catheter suggested that the... band
   2     is tight. As a result, the right ventricular pressure
   3     is suprasystemic and he is getting to the stage of right
   4     ventricular failure. He is already on Frusemide ...
   5        "In view of these problems, I have accepted him
   6     for repair of his multiple VSDs, debanding of the
   7     pulmonary artery, reconstruction, at a date earlier than
   8     previously planned."
   9        That was the message you were getting: this was
  10     bringing forward the operation because of Oliver's
  11     state?
  12   A. Yes.
  13   Q. "In view of his haemodynamic data and younger age, he
  14     does carry a high risk. The nature and risk has been
  15     explained to his parents, to which they have agreed.
  16     I would like to hope that he is operated on during the
  17     month of July", and that is underlined.
  18        Tell me, what did you understand about the high
  19     risk of the operation?
  20   A. We understood it perfectly. I mean, Mr Dhasmana did not
  21     hold anything back. He told us it was very rare for any
  22     baby of Oliver's age to have to have this operation; he
  23     would really have liked to have waited until he was 18
  24     months old, but he told us if he did not do the
  25     operation now, Oliver would not see his first birthday.

   1     We had no choice, it had to be done. It was do or die,
   2     basically. Literally if we had refused to have the
   3     operation, then he would have died anyway, so there was
   4     no decision to make. We had to take the risk. We were
   5     perfectly made aware of all the risks.
   6   Q. The other thing which you recall from this meeting with
   7     Mr Dhasmana was not just the question of the operation
   8     and the risks, but it was some further observation,
   9     I think, about Oliver?
  10   A. Yes. During my time in the office with Mr Dhasmana,
  11     Oliver had a really bad gagging and retching attack,
  12     which he had always done, virtually from birth, but it
  13     got a lot worst after his stomach and the oesophagus and
  14     everything was tightened up. Nobody, even in the long
  15     stays in hospital, had actually seen him do this
  16     firsthand and, bless him, he decided to have a really
  17     bad attack in Mr Dhasmana's office, which in a way was
  18     really good, because it proved he was actually doing
  19     this.
  20        Mr Dhasmana was looking really closely at Oliver,
  21     and he asked us if there was anything else wrong with
  22     him; had Oliver been referred to a geneticist for blood
  23     tests, because he felt, just judging by Oliver's facial
  24     appearance, there could well be something else not quite
  25     right with Oliver. He felt it should be checked out.

   1        Prior to this, I had mentioned this to a lot of
   2     nurses on the Baby Unit, and a couple agreed with me;
   3     a couple said I was over-reacting and over-protective,
   4     there was nothing wrong with him, Oliver is just Oliver,
   5     that is the way he looks, but I knew there was something
   6     else wrong with him.
   7        Mr Dhasmana agreed with me. He was the only
   8     person that actually showed any interest whatsoever, and
   9     pressed me to get Oliver referred to a geneticist, which
  10     eventually, at three and a half years old, Oliver was
  11     diagnosed as suffering a very rare genetic syndrome.
  12   Q. So although here was Oliver just seven months old,
  13     Mr Dhasmana was, although it was not his particular
  14     specialty, picking up a condition which a geneticist was
  15     three years later going to diagnose?
  16   A. Yes.
  17   Q. The news was broken to you by him, was it, obviously, in
  18     the course of conversation?
  19   A. Yes.
  20   Q. But you were not upset by it?
  21   A. No, because I knew there was something wrong with
  22     Oliver. Even my husband told me I was imagining things
  23     at times, "There is nothing wrong with him, he is
  24     perfectly normal". He was not normal. He did not even
  25     look normal. I knew there was something wrong. I was

   1     really pleased Mr Dhasmana had the courage to turn round
   2     and say "There is something not quite right with that
   3     child", so he was actually confirming what I believed
   4     all along.
   5   Q. Did he say anything else that you recall about the
   6     nature of the operation or about Oliver?
   7   A. He asked us to keep Oliver in good health, try to keep
   8     him out of heart failure, try, please try to make sure
   9     he gets no coughs or colds, and he wished us well. He
  10     said "You have a really stressful few months coming up,
  11     so I wish you all the best", and my husband turned round
  12     and said to him that "This must be a very depressing
  13     job, when you have to have parents in telling them
  14     things like this. It would really get to me, it must be
  15     awful" and Mr Dhasmana shook both our hands and he said
  16     "Once I start losing more babies than I can save, then
  17     I will quit my job, but until then", he said, "I will
  18     carry on". He just wished us all the best and said he
  19     would see us at the BRI.
  20        But he made it perfectly clear the risks that were
  21     involved. He answered all our questions.
  22   Q. He told you, I think, the operation was going to be in
  23     July?
  24   A. Yes. He would put Oliver on his next available list,
  25     which would be July.

   1   Q. Did you expect to hear from the hospital about that?
   2   A. We assumed that a letter would come through from the
   3     BRI.
   4   Q. Did it?
   5   A. Not straightaway. With having three other children and
   6     the house and everything to sort out, I really wanted to
   7     know when it was going to happen so I phoned the
   8     hospital and spoke to Mr Dhasmana's secretary --
   9   Q. Pause for a moment. Do you remember when you phoned the
  10     hospital? You have given us the date of 15th June in
  11     your statement.
  12   A. Well then, that is when it was.
  13   Q. But you did not compile the statement at the time, so
  14     how do you know that was the date?
  15   A. I kept a diary from Day 1, when Oliver was born.
  16   Q. So that date comes from the diary?
  17   A. Yes, I have all the notes here. I kept everything.
  18     That is why I can be sure of the dates. I have it in
  19     note form and everything.
  20   Q. So you can be sure of the date. You phoned on the
  21     15th. What were you told?
  22   A. She checked the listing and said Oliver was pencilled in
  23     for July and we would have a letter of confirmation. We
  24     received the letter about three days later.
  25   Q. What was the date?

   1   A. 20th July was his operation, but we were admitted on the
   2     Friday before that, on 16th July.
   3   Q. You deal in your statement -- I am not going to ask you
   4     any more about it -- with a consultation you had with
   5     Dr Martin between the phone call and the admission?
   6   A. Yes.
   7   Q. Because he repeated the nature of the operation; you
   8     understood what he said?
   9   A. Yes.
  10   Q. And you were comforted by it?
  11   A. Yes, he went over everything again and just wished us
  12     all the best, and said he was sure everything would be
  13     all right. He would see us when we were transferred
  14     back up to the Children's Hospital after.
  15   Q. Could I then take you to what happened when you actually
  16     went to the BRI on 15th July, as you had been told to
  17     report?
  18   A. We were actually told to report on the 16th July, on the
  19     Friday, but on the Thursday morning, about 10 o'clock,
  20     we had a phone call from the BRI to say that there was
  21     an opening and Mr Dhasmana would like to operate on
  22     Oliver on the Friday, so could we be at the hospital by
  23     the Thursday, by noon. We made it with five minutes to
  24     spare and as far as we were concerned, Oliver was going
  25     to be operated on on the Friday rather than the Tuesday.

   1   Q. That is as far as you were concerned. What did you find
   2     out when you got there?
   3   A. Nothing for a long time. We got to the hospital, as
   4     I say, about 5 to 12 and filled in the necessary forms
   5     downstairs before we were shown up to the cardiac unit.
   6   Q. Just stop there for a moment. The way you describe it,
   7     it sounds as though you made some rush, some effort to
   8     get there by midday?
   9   A. We had three children to sort out. I had to get my
  10     brother-in-law home from work and my sister, they were
  11     moving into the house for the duration, to take care of
  12     the children. We had no transport, we did not have
  13     a car, so my father had to have time off work to take us
  14     to the hospital. We had to pack bags; it was just
  15     a nightmare, but we thought, "No, if it is going to be
  16     tomorrow, let us get it over with". As I say, we made
  17     it with five minutes to spare.
  18   Q. Then you were saying, with a certain edge to your voice,
  19     I think, that nothing happened for quite a while?
  20   A. No. We filled in a couple of forms down in reception,
  21     at the BRI, and then we were shown up to the cardiac
  22     unit, shown Oliver's cot and then literally left alone
  23     all afternoon and we just could not understand what was
  24     happening. Oliver's surgery was due to happen on the
  25     Friday morning, and we knew there were blood tests,

   1     probably an echocardiograph to do, ECG, everything and
   2     nothing was being done; we were just being totally
   3     ignored. Nobody explained anything to us, nobody
   4     introduced themselves to us, only the nursery nurse that
   5     actually came to fill out Oliver's admissions.
   6   Q. Was there a Heart Circle office?
   7   A. Yes. Oliver's cot, his little space, was situated right
   8     opposite the Heart Circle office, and we saw a lady
   9     during the course of the afternoon coming and going,
  10     appeared to be extremely busy. We assumed she was the
  11     Heart Circle counsellor for the parents, and the last we
  12     saw of her was about 5 o'clock when she locked the
  13     office door and went home. She did not introduce
  14     herself to us. We assume that is who it was. She did
  15     not introduce herself to us, so we were left literally
  16     stranded.
  17   Q. You knew there was going to be a counsellor there?
  18   A. Yes, we were told that by Helen Vegoda at the Children's
  19     Hospital, that there was a paediatric cardiac counsellor
  20     situated at the BRI.
  21   Q. Did you ever think of knocking at the door and saying --
  22   A. She was coming and going all afternoon, she was so busy.
  23   Q. So she gave the impression of being so busy that you did
  24     not get the chance?
  25   A. We never had eye contact with her. She could not fail

   1     to see us, we were right opposite her office, but you
   2     could not make eye contact with the woman. She seemed
   3     to have a mobile phone stuck to her ear constantly all
   4     afternoon.
   5   Q. Perhaps we should look at witness 125/14. The middle of
   6     the page, in bold print you put:
   7        "Surely she knew we were coming."
   8   A. She must have known we were coming, Helen Vegoda must
   9     have been notified when we were transferred over to the
  10     Children's Hospital. She was there at Oliver's bed at
  11     9 o'clock on Monday morning as soon as she arrived in
  12     work. Oliver was not due to be admitted until the
  13     Friday, but she must have been notified we were coming
  14     in as a cancellation or whatever for an opening, and
  15     Oliver was going to be operated on on the Friday. So we
  16     did not really even have time to get our bearings; we
  17     were in there, we expected tests to be done and Oliver
  18     to go to the theatre on the Friday. Surely she should
  19     have supported us. She did not even introduce herself
  20     to us.
  21   Q. The statement, I think, is made originally by your
  22     husband and you jointly, and this part is obviously done
  23     by your husband, if we look at the very bottom of the
  24     screen.
  25        "I, Oliver's Dad [so his description] went to get

   1     something to eat," and how when you got back something
   2     had upset you. Can you tell us in your own words,
   3     I know it is in the statement, but give us your
   4     recollection?
   5   A. I will not look at the statement.
   6   Q. It is not a memory test, just a question of how you
   7     remember it today.
   8   A. It is a nightmare. A doctor literally stuck his head
   9     around the door, did not introduce himself or say who he
  10     was, just to say "There is a message from Mr Dhasmana.
  11     Oliver's operation will not be going ahead tomorrow. He
  12     will be around to see you later". That was it. He
  13     disappeared. It thought, "Well, what is going on?" My
  14     husband came back. I was in a real bad state. We
  15     telephoned family, friends, everyone, "Oliver is being
  16     operated on tomorrow", and now we were told it was not
  17     going ahead, we did not know when it was going ahead.
  18     My husband went to reception to find out what was going
  19     on and nobody seemed to know anything.
  20   Q. Can we have a look, please, on my screen first, at
  21     1840/558, the top left-hand corner.
  22        This comes from the nursing notes. The nurses
  23     have made a note in relation to Oliver:
  24        "15th July 1993, Nocte [night-time] parents quite
  25     agitated over whether Oliver is going to theatre or

   1     not."
   2        Stopping there, I imagine you were?
   3   A. That is an understatement.
   4   Q. "They were told by Mr Dhasmana at 18.00 [6 o'clock] that
   5     Oliver would be going to theatre on Tuesday."
   6   A. Yes.
   7   Q. "Night staff were told he would be going on Friday."
   8        That was the original plan.
   9        "Oliver will now be going to theatre on Tuesday.
  10     Parents both wanted to sleep by the bed. It was stated
  11     that only one parent could stay by the bed. The parents
  12     feel they have had no support and got very irate about
  13     the situation."
  14   A. That is right, in a very nice way.
  15   Q. So when did you discover that it was going to go ahead
  16     on the Tuesday?
  17   A. When Mr Dhasmana came to see us. He came to see us
  18     straight from theatre. He was extremely apologetic. He
  19     said he had been called, I believe it was to Birmingham
  20     to assist on a life-or-death operation on a new-born
  21     baby, and he was really sorry that Oliver at that
  22     time -- Oliver at that time was not classed as
  23     a life-or-death operation and he had no choice but to
  24     reschedule Oliver's surgery for the Tuesday morning. We
  25     were quite happy with that. If Oliver had been in the

   1     same sort of situation, we would have wanted that sort
   2     of service for him. Once it was explained to us
   3     properly, then we were quite happy with that.
   4   Q. So there was no problem, provided you had a decent and
   5     proper explanation?
   6   A. That is right, yes.
   7   Q. That was at 6 o'clock. What happened at 7 o'clock?
   8   A. It just went from bad to worse. We went down to the
   9     shop. We got back and we were told by a nurse that
  10     Oliver's operation was back on again, but this time
  11     Mr Dhasmana was not operating at all, it was
  12     Mr Wisheart.
  13        We had never even heard of Mr Wisheart, we did
  14     not have a clue who he was. All our faith was in
  15     Mr Dhasmana. He had operated on Oliver for the first
  16     operation. We trusted him completely, implicitly, and
  17     it was just a nightmare. So we were told that
  18     Mr Wisheart was going to operate.
  19        Then she came back and told us it was not going to
  20     happen on the Friday, it was going to be now the
  21     Saturday morning, and it would not be Mr Wisheart but
  22     his understudy. By then, I mean, it was just a joke.
  23     We just totally ignored the whole lot and thought "Until
  24     we hear from Mr Dhasmana what is going on, we will just
  25     take it with a pinch of salt", but it did not help. It

   1     really did raise the stress levels. We refused and said
   2     "No-one is going to touch Oliver apart from
   3     Mr Dhasmana. We are happy with him operating, and it
   4     will go ahead Tuesday as planned". No-one seemed to
   5     know what the other person was doing down there. It was
   6     just dreadful.
   7   Q. The next entry on the same screen, 16/7/93, now the
   8     16th:
   9        "Parents spoken to about yesterday. They feel it
  10     is better forgotten. Much happier today."
  11        Is that a "let bygones be bygones approach"?
  12   A. It was an awful situation. We felt really
  13     uncomfortable. We are not the sort of persons that like
  14     to complain. We were there for Oliver's benefit, we
  15     just wanted to get ready for Tuesday. We did not want
  16     problems thrown at us. We wanted to spend some time
  17     with him and enjoy the time we had left with him. We
  18     did not need all this. We just felt "As long as
  19     everything goes okay from now on in, let us all try and
  20     get on". It was just getting out of hand.
  21   Q. It goes on, I am afraid I cannot read the next two
  22     words:
  23        " ... all Oliver's care given by parents. They
  24     are now self administering Oliver's drugs. All okay by
  25     the pharmacy. Parents will be sleeping by Oliver's

   1     bed."
   2        Whatever the problem with them saying only one of
   3     you could be there the night before, both of you were
   4     now allowed to sleep by his bed?
   5   A. We did not both sleep by his bed. There was a chair
   6     placed by his bed. There were a lot of side rooms
   7     because of the other cardiac patients and over the
   8     weekend, the Saturday and Sunday evenings, we were given
   9     one of those rooms. Oliver was continually pump fed,
  10     asleep all the night and they assured us if he woke up
  11     they would come and get us, so eventually accommodation
  12     was sorted out.
  13   Q. But there was a problem, was there, on the first night,
  14     over where you were going to sleep?
  15   A. The very first night, yes, which we were obviously under
  16     the impression that would be the night before Oliver's
  17     operation. They did say that we could not both stay by
  18     Oliver's bed. They felt that my husband should go home
  19     because Oliver's operation was not taking place on the
  20     following day, and we just refused. We had already made
  21     arrangements at home and we were not going to break
  22     those arrangements. We were both quite happy to sit up
  23     by the bed. We understood it was a fire risk, we could
  24     not both sleep by the bed, we were not trying to be
  25     awkward, but we had gone through all of this together

   1     and there was no way I was sending my husband home.
   2     I needed him there, Oliver needed him there, and he
   3     needed to be there. So it was eventually sorted out.
   4     The first night we slept in Helen Stratton's office, the
   5     paediatric cardiac counsellor, and over the weekend we
   6     had one of the side rooms.
   7   Q. A room known as the Blaise Room. You may not remember
   8     the name?
   9   A. Not one of the parent's rooms. We did not have that
  10     until the night of Oliver's operation. That was another
  11     story.
  12   Q. I think if we look on the same sheet, the top right-hand
  13     corner, underneath "Consultant" --
  14   THE CHAIRMAN: I have taken it off as there is an address
  15     which is visible.
  16   MR LANGSTAFF: I am grateful. Can we move it right across
  17     to the right-hand side, please? Thank you, Chairman.
  18     Here we see the address, Mum and Dad sleeping on ward
  19     with Oliver. There is a reference to the Blaise Room.
  20     Did you ever get to the Blaise Room, which I think is
  21     one of the dedicated parents' rooms?
  22   A. Yes, we did, on the night Oliver was on ITU, the night
  23     after his operation.
  24   Q. That presumably must have been added afterwards?
  25   A. We were faithfully promised we could have that room the

   1     night before Oliver's operation. It was available, it
   2     had been cleaned especially for us. We were told
   3     because of the high risk to Oliver, the fact he may not
   4     survive the operation, we had a free licence to do with
   5     Oliver as we wished that evening. We could have him
   6     sleeping in with us, we could take his cot into the
   7     Blaise Room and have him sleeping with us. We did not
   8     want to do that because he was continuously pumped, he
   9     had hooks and wires all over the place, and I had to
  10     shut his pump off at 3 o'clock in the morning anyway.
  11     But we were promised we would have the Blaise Room the
  12     night before the operation, so if we wanted to spend
  13     some private time alone or with Oliver, we could have
  14     that.
  15        At 9 o'clock the evening prior to Oliver's
  16     operation, we asked for the key. We had baggage and
  17     things we wanted to get sorted out. They could not find
  18     the key anywhere, and it transpired the nursery nurse
  19     had taken the key to the Blaise Room home in her pocket
  20     so we could not have the room until the night after
  21     Oliver's operation. So my husband spent the night
  22     before Oliver's operation in the corner of the ward on
  23     a mattress, and I sat up all night in a chair.
  24   Q. That is something you had been told: you could have the
  25     Blaise Room after the initial night's disaster?

   1   A. Yes, we were promised faithfully we could have that room
   2     the night before Oliver's operation, so we could have
   3     a bit of privacy and spend some time with Oliver.
   4   Q. I have asked you about the rooms. Let me ask you now
   5     about Oliver's drugs. What time did Oliver normally
   6     have his drugs?
   7   A. He had them twice a day, once in the morning, so
   8     obviously we would give him his drugs in the morning
   9     before he arrived in the hospital, and 8 o'clock in the
  10     evening. He was on three different drugs.
  11   Q. So when 8 o'clock approached --
  12   A. Nothing. So my husband went to the reception desk and
  13     asked, explained it was time for Oliver's drugs, could
  14     they be drawn up, please, and basically, he was given
  15     a free licence to go to the drugs cabinet himself; he
  16     was given the key to go to the fridge and draw the drugs
  17     there, give them to Oliver, and we just could not
  18     believe it, that that would be allowed.
  19        At the Children's Hospital the drugs are drawn up
  20     by the nurses, they sign for them. Oliver's drugs were
  21     given by nasal tube or gastrostomy tube. We were
  22     allowed to put them down the tube, but to actually draw
  23     the drugs up and be given a key to the drugs cabinet, it
  24     was unbelievable. We just could not believe that we
  25     were allowed to do that.

   1   Q. You make a complaint in your statement about the very
   2     first mix of Digoxin?
   3   A. Yes. It was an adult dose.
   4   Q. You say adult dose, or mixture?
   5   A. My husband always dealt with Oliver's drugs, and he was
   6     the one that always drew them up at home. I would have
   7     to refer to the statement, because that was not me.
   8     I did not draw them up.
   9   Q. So from what we read in the statement, let us have
  10     a look at it. It is 125/15, witness 125, page 15, it is
  11     the central paragraph:
  12        "It was now coming up to Oliver's drug time".
  13     This is your husband again talking?
  14   A. Yes.
  15   Q. He had gone to see the nurse. Around 15 minutes later
  16     the nurse came and told him that Oliver's drugs were
  17     ready and he had to go and get them.
  18        Then he discovered the Digoxin was not the
  19     paediatric mixture but an adult mix?
  20   A. That is right.
  21   Q. By "mix", does he mean the form in which it came or the
  22     actual quantity?
  23   MR DARBYSHIRE (from the floor): The form in which it came.
  24   A. We were just not happy with that, so we got on the phone
  25     and asked my Dad to bring Oliver's drugs in. They were

   1     in the fridge at home. From then on in we told the
   2     nurses that we had Oliver's drugs from home and they
   3     were kept in the fridge, and as and when it was Oliver's
   4     drug time, my husband would go to whichever nurse was in
   5     charge of the keys, she would hand the keys over, he
   6     would go to the fridge, draw the drugs up and give
   7     Oliver his drugs. That happened every time, until,
   8     obviously we got into the ITU.
   9   Q. So in any event, with those various problems, the room,
  10     the drugs and the timing of the operation, that was the
  11     night of the 15th. Let us move forward to the next
  12     day.
  13        Did anything in particular happen that you
  14     recollect the next day?
  15   A. On the 16th, Oliver had all these tests, ECG, blood
  16     tests, everything was beginning to work towards the
  17     Tuesday. Round about mid-morning, Helen Stratton, the
  18     counsellor, came over and she introduced herself to us
  19     and I just tried to be really polite to her. I was
  20     really embarrassed, I felt really uncomfortable. She
  21     came over and neither of us said a word. She just
  22     looked at my husband and basically, she said, "I know
  23     you do not like me, I do not really care what you think
  24     of me. A lot of parents have not liked me in the past,
  25     it really does not bother me", and then she walked

   1     away. Then she came back. Whether she had second
   2     thoughts, I really do not know. She came back, invited
   3     us into her office for a chat. My husband did not want
   4     to go. He did not want to come but I asked him to.
   5     I said "This is really embarrassing, let us go in and
   6     hear what she has to say".
   7        She introduced herself and gave us a few leaflets
   8     and basically told us nothing we had not already been
   9     told by Helen Vegoda at the Children's Hospital, but by
  10     then the damage had been done, because she should have
  11     approached us on the day we were admitted, and she had
  12     every opportunity to do so.
  13   Q. Was she the person you had seen the day before?
  14   A. Yes, our assumptions were right; it was the same woman.
  15   Q. When she came to see you, you had slept in her office
  16     the night before?
  17   A. Yes.
  18   Q. How did the conversation actually begin? Did she say
  19     "Hello, I am Helen Stratton", or was it just silence?
  20   A. She just sort of came over to us and she introduced
  21     herself. I spoke to her. My husband had no intentions
  22     of speaking to her, he was so disgusted with the fact
  23     she had not introduced herself the day before.
  24   Q. It might not have been her fault, she might not have
  25     been told you were coming?

   1   A. She should have been told. I am sure she should have
   2     been told that Oliver was being admitted for surgery the
   3     following day. It is obvious we were going to be in
   4     a hell of a state about that. We did not even have
   5     time, we were expecting it to be the Tuesday, it had now
   6     been brought forward. We expected the whole battery of
   7     tests to be run on the Thursday afternoon. Nothing was
   8     done. She should have understood enough to know we were
   9     going to be pretty stressed out knowing Oliver was going
  10     into theatre the following day, but she did not take the
  11     trouble to introduce herself. She must have known we
  12     were being admitted on that day, otherwise there was
  13     a great breakdown of communications somewhere.
  14   Q. Whether there was a breakdown of communication or not,
  15     if we go back to the actual meeting, you say you spoke
  16     to her. What did you say to her?
  17   A. I cannot remember what I said to her.
  18   Q. "Hello, we are the Darbyshires"?
  19   A. I think it must be "We are Oliver's parents" or
  20     something like that. I do not know. She asked us to go
  21     into her office. I looked at my husband, he looked at
  22     me and before he opened his mouth and said a word, she
  23     made a statement: "I can tell you don't like me. I do
  24     not really care what you feel about me. I have been
  25     told, I have had this reaction from other parents, and

   1     I really do not care".
   2   Q. Apart from your body language, had you given her any
   3     reason to think you did not like her?
   4   A. No, I went out of my way, because I do not like being
   5     thought of as making a fuss and I went out of my way to
   6     be polite to her, to make up for the fact that my
   7     husband did not want to speak to her.
   8   Q. So she might have seen something in his reaction but not
   9     yours?
  10   A. Yes, but at the end of the day she should take into
  11     account parents are going to be stressed out, in
  12     a situation like that. She should take that into
  13     account.
  14   Q. You make the point that is part of her job, perhaps?
  15   A. Yes, it is.
  16   Q. When you went into the office and she chatted and gave
  17     you -- as she chatted when she gave you the pamphlets,
  18     was that at all helpful?
  19   A. She just asked if we were involved in the Heart Circle.
  20     Up to that time we had not been. Oliver took up all our
  21     time and the other children. She gave us a few leaflets
  22     and I think she mentioned a book we could buy and that
  23     was it, basically. We had no further contact with her
  24     until the morning of Oliver's operation. We still got
  25     our support from Helen Vegoda at the Children's

   1     Hospital. We phoned Helen up on a regular basis and
   2     spoke to her. We got what we needed from her.
   3   Q. The Saturday and the Sunday were rather better days,
   4     were they?
   5   A. Nothing untoward happened on the Saturday, which was
   6     rather nice.
   7   Q. That is what I meant by saying they were rather better
   8     days.
   9   A. Yes.
  10   Q. What about the Sunday?
  11   A. Sunday was fine as well. The only thing that really
  12     happened on the Sunday, we were introduced to another
  13     Helen -- there seemed to be a lot of Helens around. She
  14     was going to be Oliver's personal nurse in ITU. She
  15     came in and introduced herself to us. She took us to
  16     ITU. We spent a couple of hours with Helen, I think on
  17     that evening. She took us into ITU and showed us the
  18     bed where Oliver would be. None of it shocked us
  19     because we had seen it at the Children's Hospital, the
  20     actual bed and tubes and everything, we knew what was
  21     going to happen to Oliver. She explained about the
  22     procedure, what would happen when Oliver came back from
  23     theatre. She was really nice; she was really helpful.
  24   Q. Just to sum up the weekend, if we could perhaps have
  25     a look at the medical records, 1840/554, this is

   1     8 o'clock in the morning on the 19th, so the Monday
   2     after the weekend:
   3        "Parents spoken to about preparations needed today
   4     for Oliver's operation. Seemed quite happy. Spoken to
   5     by Helen Stratton. Dad very upset and complaining about
   6     care and support given to them over the weekend. No
   7     complaints were made at the weekend about standard of
   8     support and care, and parents did not ask to see senior
   9     members of staff re this."
  10        So I think what that sentence means is, you are
  11     complaining on the Monday morning, even though no
  12     complaint had been made to senior members of staff
  13     actually at the weekend?
  14   A. We did not complain on the Monday morning. We
  15     complained on the Friday about what had happened.
  16   Q. We picked that up already in the nursing notes. Did you
  17     complain to anyone else over the weekend about what had
  18     happened?
  19   A. No, because the weekend went quite -- there were no
  20     incidents over the weekend.
  21   Q. Just the Friday and seeing Helen, of course, on the
  22     Saturday?
  23   A. Yes.
  24   Q. This must therefore relate to Helen Stratton,
  25     presumably, about the weekend?

   1   A. I assume so.
   2   Q. When it says "Dad very upset and complaining about care
   3     and support given to them over the weekend --
   4   A. I do not know what they mean about "over the weekend",
   5     because we were mainly left to our own devices over the
   6     weekend. It is pretty quiet over the weekend.
   7   Q. It goes on:
   8        "Helen Stratton had a long chat with parents, who
   9     are still not happy. Mr Dhasmana informed of the
  10     situation."
  11        What can you tell me about that note? First of
  12     all, is it right that you had a long chat with Helen
  13     Stratton?
  14   A. No. We did not, did we? We were totally unaware of
  15     the long chat, because the chat we had with Helen
  16     Stratton in her office, we were in her office for about
  17     10 minutes.
  18   Q. You do not know, of course, how --
  19   A. I do not recall anything about a long chat with Helen
  20     about the reasons of why we were not happy.
  21   Q. He goes on talking about the afternoon of the Monday.
  22     Lesley Salmon --
  23   A. That was the manageress. She did actually call us into
  24     her office to apologise for the way that we had been
  25     treated.

   1   Q. So she apologised?
   2   A. Yes, she did.
   3   Q. That was presumably in response to --
   4   A. -- to our complaints, I would imagine, the fact we were
   5     not happy.
   6   Q. To complaints which had reached her?
   7   A. Yes.
   8   Q. Just to tidy up on this note, the very last note there,
   9     "Nocte [by night] last feed given at 2.45. Mum and Dad
  10     stayed by the bed as we were unable to find Blaise room
  11     key."
  12        That of course confirms exactly what you said?
  13   A. It transpired the following day the nursery nurse had it
  14     in her pocket. She took it home with her.
  15   Q. So the operation. You knew, I think, that the operation
  16     was very risky?
  17   A. Yes.
  18   Q. That had been explained to you and you understood it.
  19     Did you feel you had no choice?
  20   A. There was no choice. I mean, if Oliver had not had the
  21     operation, he would have died anyway, so by giving him
  22     the chance to go through the operation and survive, that
  23     was the only choice that was left open, but we were made
  24     aware of all the risks, we were told everything.
  25     Mr Dhasmana made it quite clear it was a very high

   1     risk. He explained about the slight risk of brain
   2     damage; he explained everything to us. There were no
   3     queries left. He explained and took as much time as we
   4     needed to explain everything.
   5   Q. Oliver had problems when it came to inserting
   6     intravenous lines?
   7   A. It was a nightmare. All his veins had collapsed and it
   8     was just impossible to get lines in.
   9   Q. Did that cause any difficulties at the time of the
  10     operation?
  11   A. Yes. We told the doctor this. He wanted to take blood
  12     for cross matching during the operation and we explained
  13     to him it would be a problem. We explained that at the
  14     Bristol Children's Hospital they always had an
  15     anaesthetist. They were well aware of Oliver, and well
  16     aware of what happened every time they tried to put just
  17     a drip in, it was a nightmare. They would always call
  18     the resident anaesthetist to do this, and more often
  19     than not, he got it in the first time. We asked them if
  20     they could do that, because we knew the problems they
  21     had, but they did not listen. They called the doctor.
  22     He had numerous tries. There were nurses laid over him,
  23     holding him down, he was screaming. I eventually called
  24     a halt to it and told them to stop.
  25        Eventually they did bring up an anaesthetist who

   1     asked me what the procedure was at the Children's
   2     Hospital, what they did to Oliver. I explained they
   3     always used the saturations monitor to check him, see
   4     how stressed he was getting, and he did everything
   5     I asked him to and got the line in, no trouble at all,
   6     but the doctor who tried to get the line in, my husband
   7     did say to him, he tried to explain who him, "We really
   8     are not going to be able to do this". He got really
   9     angry with my husband and basically just said to my
  10     husband, "I am here to help. If you do not want me to
  11     help Oliver, there is nothing I can do" and he got up
  12     and walked away. We were left with a screaming baby, no
  13     line in. He did come back eventually to apologise, to
  14     be fair to him, and an anaesthetist was called.
  15   Q. You do not know who that doctor was, do you?
  16   A. No, I do not, I am sorry, I do not have a clue.
  17   Q. When he said basically "If you do not want me to help,
  18     there is nothing I can do", was that the actual words he
  19     used, or the meaning of them?
  20   A. No, that was the actual words he used to my husband.
  21   Q. So they got the IV line in. Oliver had his last feed.
  22     He had his pre-med, and you went down to the theatre
  23     with him?
  24   A. Yes.
  25   Q. Did anyone else go with you?

   1   A. Yes, Helen Stratton. She could see we were getting
   2     ready to take Oliver to the theatre. She came over and
   3     said she would accompany us to the theatre and would it
   4     be all right if she carried Oliver, which we adamantly
   5     refused and my husband carried Oliver to the theatre.
   6   Q. Did the same thing happen as had happened as you have
   7     already told us at the Children's Hospital, that you
   8     stayed with Oliver until he went to sleep?
   9   A. No, we were under the impression, we were told we could
  10     stay with Oliver until he was asleep. We expected to be
  11     able to do that, and we got into the anaesthetist's
  12     room. Oliver was taken from my arms. I was not asked
  13     to hand him over, he was taken from me. He was
  14     screaming, he was crying, he was flailing around. My
  15     husband took him, they said "Have one last cuddle with
  16     Dad", and they gave him to my husband. He gave him
  17     a really quick cuddle and I had him back again and they
  18     ushered us out of the room and that was the last thing
  19     we saw: Oliver was flailing around in the nurse's arms,
  20     screaming and crying. That was totally unnecessary. We
  21     were told we could stay with Oliver until he was
  22     asleep. I kept feeling "If he does not come out of
  23     here, this is going to be the last impression we ever
  24     have of Oliver", and that was really upsetting. The
  25     time before, his other operations, we had always walked

   1     out of there and he was asleep, we could see he was
   2     peaceful and that was a good memory to take. It was
   3     a nightmare to watch him. They did not wait until we
   4     had got out of the room, they were poking things in him,
   5     I did not know what they were doing. I was just too
   6     upset by them.
   7   Q. Did you get any comfort or attempted comfort from Helen
   8     Stratton?
   9   A. No, she just ushered us out of the room, we were left
  10     there and we did not know what to do. We did not know
  11     what to do. We were told not to report back to IT for
  12     hours and hours. She did not give us any support
  13     whatsoever.
  14   Q. So where did you go?
  15   A. We went to the hospital canteen, had coffee, and then we
  16     walked straight up to the Children's Hospital and sat
  17     outside Helen's office until she arrived.
  18   Q. This is Helen Vegoda?
  19   A. Yes.
  20   Q. So you saw her when, about 9 o'clock?
  21   A. She knew Oliver's operation was that day. We were
  22     obviously really upset and we went in. She made us tea
  23     and we sat with her for an hour and a half and we told
  24     her how disgusted we were with the treatment we had down
  25     at the BRI. She said we should make a formal complaint;

   1     she had been told things like this from other parents,
   2     and basically, you know, we should get it in writing.
   3     I am afraid we did not do so, because Oliver did survive
   4     and we were just so happy with the fact that he came
   5     through it, we just went home and we just wanted to put
   6     it out of our minds, basically.
   7   Q. You have already answered my next question, which was
   8     going to be, if she advised you to complain, if you had
   9     done, and you answered what you were advised and why you
  10     did not.
  11   A. I did not ever complain. I did not believe it would
  12     come out in something like this, to be honest.
  13   Q. You went back after what I imagine must have been one of
  14     the longest days you had?
  15   A. It was a nightmare. I would not wish it on my worst
  16     enemy.
  17   Q. You saw Mr Dhasmana, did you?
  18   A. We were told to report back at about 2 o'clock to find
  19     out -- 1 o'clock I have down here -- and we were told
  20     that the most critical time for Oliver was when they
  21     were trying to take him off bypass, which would
  22     hopefully be round about 2 o'clock, and then she said
  23     that we would hear nothing until about 4 o'clock, so we
  24     just wandered around, had more coffee and sat in the
  25     parents' waiting room and Helen, the nurse that would be

   1     taking care of him in the ITU, came to find us at 3.30.
   2     We were sure something had gone wrong because she said
   3     4 o'clock, but she assured us everything had gone well,
   4     he was now in recovery and we could see him as soon as
   5     he was sorted out in ITU.
   6   Q. So you were delighted and relieved, and later that
   7     evening you saw Mr Dhasmana and told him what happened?
   8   A. We saw Mr Dhasmana very soon after we saw Oliver. We
   9     went in, to be reassured Oliver was okay and to see
  10     him. We only stayed for a few minutes because the
  11     nurses were still very busy with him and Mr Dhasmana
  12     found us in the parents' room. He sat and explained
  13     exactly what he had done, the fact that there was still
  14     one hole left, but he would not take the risk of trying
  15     to patch that one up because it was in a very, very
  16     difficult position, but on the whole he was extremely
  17     pleased with Oliver and how he had come through.
  18   Q. I am not going to go in any detail through the detail of
  19     the next few days, just to pick one or two points up,
  20     because it is all set out in your husband's statement.
  21        If we could have on the screen witness 125/19,
  22     down the page to Wednesday 21st July. Let us have
  23     a look at that. It reads like a diary entry.
  24     "Wednesday 21st July, Oliver is doing remarkably well"?
  25   A. Yes, these all were. Once we had the letter through for

   1     Oliver's admission, I started keeping everything, not
   2     just in note form but on a day-to-day basis as well.
   3   Q. The note we see later on about what Mr Dhasmana said
   4     about when you could go to the Children's Hospital, was
   5     something which was said that day, was it?
   6   A. Yes.
   7   Q. And you were asking --
   8   A. We had been told by other parents that had been at the
   9     BRI that Mr Dhasmana liked his children to recover in
  10     the Children's Hospital, so we expected that to happen
  11     anyway. So we were told that he did not like his babies
  12     and children recovering in the BRI; they should never be
  13     there; it was not geared for children and as soon as
  14     they were well enough to be moved, he referred them back
  15     to the Children's Hospital. So that was a foregone
  16     conclusion; we expected that to happen. He did not
  17     expect them to go to high dependency, he expected them
  18     to go direct from ITU to the Children's Hospital.
  19   Q. And when you raised the issue with him, you have noted
  20     his reply. Were those his exact words, or the effect of
  21     what he was saying?
  22   A. It was "I don't like my babies", because it sounded
  23     really possessive, as if he cared about them, "I don't
  24     like my babies or children being down here. They should
  25     never be down here."

   1   Q. Apart from the incident on 22nd July with the arterial
   2     line, which you tell us collapsed and it took two hours
   3     to site another one, have you any complaint about the
   4     actual care at the BRI?
   5   A. Not in the ICU, not at all. We took care of Oliver with
   6     his eye care and mouth care and changing him. One thing
   7     I was quite surprised about, I had not actually got down
   8     here, we were actually allowed to be present when Oliver
   9     was extubated and taken off the ventilator, and I was
  10     quite happy about that. I wanted to be there. We had
  11     asked to do that at the Children's Hospital and they
  12     said it was not hospital policy, but there were no
  13     qualms about that at the BRI; we were allowed to be
  14     there.
  15   Q. So far as the nurses were concerned, at the time, did
  16     you think that they were doing their best for Oliver?
  17   A. They did absolutely everything they could. I cannot
  18     fault the nurses at the ITU. It was not ITU that was
  19     the problem, it was the few days before that. ITU were
  20     wonderful, they kept us informed of everything and let
  21     us be as involved as we could be, as we wanted to be.
  22     No, they were fine, perfect.
  23   Q. The reason I ask you that is because your husband makes
  24     the point in the statement, on the next page -- let us
  25     have a look at it, 125/20, the bit in italics at the top

   1     of the page. He says there were no paediatric medical
   2     staff there?
   3   A. I do not think he meant in the ITU there, I think he
   4     meant the few days prior to the ITU. All there was
   5     available on the actual cardiac ward was the nursery
   6     nurse.
   7   Q. The lack of thought towards parents and their feelings,
   8     that is really dealing with the way everything started,
   9     which you have already told us about?
  10   A. Yes. That seemed to escalate until Oliver went to the
  11     ITU, even down to the not sorting out of the room and
  12     the nurse going home with the key in her pocket. They
  13     might sound like really silly, niggly things, but we
  14     should have been concentrating on Oliver, not worrying
  15     about where we were going to sleep, where we were going
  16     to put our bags, was he going to theatre Friday,
  17     Saturday, Tuesday? It was all so unnecessary.
  18   Q. But so far as the ICU were concerned, the staff there,
  19     although your husband makes the criticism that they may
  20     not have been paediatric trained, you did not notice
  21     that in the care they were actually giving to Oliver?
  22   A. It is the actual cardiac unit, he is not referring to
  23     the ICU.
  24   Q. In any event, you were happy to get back up the hill?
  25   A. Yes.

   1   Q. Did you notice the difference when you did?
   2   A. Yes. It made you so appreciative of the Children's
   3     Hospital, and when we got back up there, we knew the
   4     nurses so well, after spending a solid 12 weeks in
   5     there, and other times as well. I said to the nurses,
   6     "Why didn't you tell us what it was like down there?"
   7     The nurses said, "If we told our parents what it was
   8     like at the BRI, you would never want to go there in the
   9     first place."
  10        They told me that they had actually been asked to
  11     go and work down in the Cardiac Unit and they refused
  12     because they knew what it was like down there. But that
  13     was their exact words, the nurses I got really friendly
  14     with, that took care of Oliver: "If we told our parents
  15     what it was like at the BRI, they would never want to go
  16     there."
  17        But we had no choice; there was nowhere else for
  18     Oliver to go.
  19   Q. After that, Oliver just got stronger and is now at home
  20     with you?
  21   A. Yes. He is nearly seven years old now.
  22   Q. Not yet discharged?
  23   A. No.
  24   Q. You have discovered, as you tell us in the statement,
  25     that he is suffering from cardio-facio-cutaneous

   1     syndrome?
   2   A. Yes, it is a very rare genetic syndrome.
   3   Q. He was referred to a geneticist, I think, in April 1994
   4     and seen in July 1995, to diagnosis that condition?
   5   A. Yes.
   6   Q. You are as confident as you can be for the future.
   7   A. The future is really unknown, with Oliver. We do not
   8     really know. He is not toilet-trained. He has
   9     a special needs teacher. He is still constantly fed by
  10     a gastrostomy tube. There is a lot of problems, but,
  11     yes, on the whole we are confident.
  12   Q. I have taken you through -- and some parts, I appreciate
  13     I have taken you through fairly quickly -- what was in
  14     the joint statement of your husband and yourself. Is
  15     there anything which you would want to emphasise in
  16     particular which you do not think has had sufficient
  17     emphasis?
  18   A. All I know is that Oliver still has one hole left.
  19     Nobody knows what the future brings. We know he may
  20     have to be operated on in the future if it should become
  21     a problem, and I know it is not possible now, but
  22     I would not hesitate to let Mr Dhasmana operate on my
  23     son again. I think you have lost a very good surgeon
  24     and I would not hesitate. I am quite happy to put my
  25     son's life in his hands again.

   1   MR LANGSTAFF: The panel may have some questions, but I am
   2     not going to ask you anything more.
   3   THE CHAIRMAN: We have no questions. Is there any
   4     re-examination?
   5   MR SHARP: Sir, I am afraid there is, briefly.
   6            Re-examined by MR SHARP:
   7   Q. I deal firstly with the question of the split site. The
   8     main issue for this tribunal is the split between the
   9     BRI and the Children's Hospital, but you had the
  10     experience of moving from the BMH to the Children's
  11     Hospital and I just wanted to compare the two. It may
  12     not be apparent to the Panel exactly how you and Oliver
  13     were moved from the BMH to the Children's Hospital?
  14   A. There is a tunnel adjoining both hospitals from the BMH
  15     to the Children's Hospital, an underground tunnel. We
  16     were not actually moved until the morning following
  17     Oliver's operation. He was transported by incubator
  18     through the tunnel. That is how it went, to the theatre
  19     from there.
  20   Q. Up until the post-operative care at the BRI, did you
  21     experience directly the lack of paediatric training in
  22     nursing staff, or was it merely something that, looking
  23     back on it after the event, you began to realise had
  24     been present?
  25   A. It was just non-existent. I mean, we could compare the

   1     two, obviously, because we had so much dealings with the
   2     Children's Hospital. For some reason, we just assumed
   3     it would be the same at the BRI. We just assumed we
   4     would get the same support and the same nursing care,
   5     but it was not until Oliver got into ICU that the care
   6     was just as good. We were virtually left on our own,
   7     taking care of Oliver up to the day of his operation.
   8     I felt we were competent enough to do that anyway, so
   9     maybe it did not affect us as much as it affected other
  10     parents. We were used to dealing with Oliver and all
  11     his problems and juggling his drugs and trying to keep
  12     him out of heart failure. That was a way of life for
  13     us, but it would have been nice to have some support
  14     there.
  15   Q. It is clear from the nursing notes we have seen -- and
  16     many that were not actually read out -- that you were
  17     repeatedly recorded as having been giving "all care".
  18     Is that the case? Were you giving all of Oliver's
  19     care?
  20   A. Yes.
  21   Q. There has been a reference in much of the evidence we
  22     have heard to a team approach to the care of the
  23     children at the hospitals. Did you feel you were part
  24     of the team at the Children's Hospital?
  25   A. The Children's Hospital, yes.

   1   Q. You have told us that --
   2   A. It was like a family at the Children's Hospital.
   3     Everybody was involved, everyone, from the doctor that
   4     took blood to the anaesthetist, the surgeon, the
   5     parents. We were important. Oliver was the most
   6     important, obviously, but our feelings were always taken
   7     into consideration. The only person that supported us
   8     at the BRI was Mr Dhasmana.
   9   Q. So does it follow that you did not feel part of the team
  10     at the BRI?
  11   A. There was no team. The only team that was available was
  12     in ITU.
  13   Q. You were asked about the incident of blood being taken
  14     and the impossibility of succeeding so far as the doctor
  15     who walked away was concerned?
  16   A. Yes.
  17   Q. You then told us about the anaesthetist who came and you
  18     gave the impression that he was effectively acting under
  19     your direction, from your experience at the Children's
  20     Hospital. Did you mean that?
  21   A. No, I did not mean that. I explained to him the
  22     procedure, what happened normally at the Children's
  23     Hospital. After Oliver's stomach surgery one of his
  24     lines went down, and it took virtually a whole day to
  25     get a line back in, and everyone was aware of how bad it

   1     was to get lines in Oliver.
   2        I explained to him that he would not have success;
   3     that they always used the saturations monitor on Oliver,
   4     they always checked how breathless, how clammy, he was,
   5     if necessary slightly sedating him so he would not get
   6     into a state. He sat and listened, and then he acted on
   7     what I had told him. They usually say that parents know
   8     best, but they do not listen to us often enough. He did
   9     actually listen and gave us that respect and got the
  10     line in, no problem. I do not mean to say I stood there
  11     telling him what to do, do this, do that. I did not
  12     want to give that impression.
  13   Q. Did you get the impression he had much experience of
  14     dealing with children?
  15   A. I do not know. I could not comment. All I know is, he
  16     got the line in on the first try. So, I do not know,
  17     maybe that answers the question.
  18   MR SHARP: Thank you.
  19   THE CHAIRMAN: I am grateful, Mr Sharp.
  20   MR LANGSTAFF: Sue, thank you very much, indeed, for my
  21     part, for coming to give evidence. I am sorry we have
  22     kept you here a little bit later than you might have
  23     anticipated. It may be that when you go back home,
  24     perhaps when you have talked things over with your
  25     husband, there may be things you would have wanted to

   1     have added which you have not. Please feel free to do
   2     so in writing or by contacting the Inquiry team.
   3   THE CHAIRMAN: Mrs Darbyshire, I echo, firstly, the apology
   4     for keeping you here longer than expected. We are
   5     grateful to you for staying and telling us your story.
   6        Secondly, I also echo what Mr Langstaff has just
   7     said: if you do have anything else you want to let us
   8     now about, you can contact us in whichever way is most
   9     suitable and convenient and we will be happy to hear
  10     from you. Thank you again for coming. We are very
  11     grateful.
  12            (The witness withdrew)
  13   MR LANGSTAFF: Sir, that concludes the evidence for today.
  14   THE CHAIRMAN: Thank you, Mr Langstaff. Tomorrow morning,
  15     then, at 9.30.
  16   MR LANGSTAFF: Yes.
  17   (3.50 pm)
  18     (Adjourned until Wednesday, 24th March 1999 at 9.30 am)
  19
  20
  21
  22
  23
  24
  25

   1
   2
   3
   4
   5                I N D E X
   6
   7
   8     MRS LINDA BURTON (Sworn).............................. 1
   9     Examined by MISS GREY................................. 1
  10
  11     MRS ALISON RUTH THOMAS (Sworn)....................... 58
  12     Examined by MR LANGSTAFF............................. 58
  13     Examined by THE PANEL............................... 111
  14     Re-examined by MR SHARP............................. 112
  15
  16     MRS SUSAN DARBYSHIRE (Sworn)........................ 115
  17     Examined by MR LANGSTAFF............................ 115
  18     Re-examined by MR SHARP............................. 174
  19
  

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Published by the Bristol Royal Infirmary Inquiry, July 2001
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