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Daily transcripts
Hearing summary
18TH MARCH 1999
The first week of the Inquiry drew to a close today with oral evidence from two
parents: Mr Malcolm Curnow from Devon and Mrs Michelle Cummings from South
Gloucestershire.
Mr Curnow’s daughter Verity was born at Tiverton Hospital, Devon, in December
1989. He described how the diagnosis of heart murmur led to Verity’s subsequent
transfer to Bristol Children’s Hospital for Cardiac Catheterisation. At this point Mr
and Mrs Curnow were told that Verity would need a ‘shunt’ operation (a shunt is
a connecting tube between the aorta and pulmonary artery) at the age of nine months. The
core of Mr Curnow’s statement covered the period leading up to Verity’s
operation, the operation itself and events leading up to Verity’s death. Mr Curnow
then went on to describe his and his wife’s treatment following the death of their
daughter at the BRI and his later dissatisfaction with the Infirmary’s responses to
his requests for further information about his daughter’s treatment.
Mrs Michelle Cummings from South Gloucestershire told the Inquiry about her
daughter Charlotte, who was born in March 1987 at Southmead Hospital with very serious
heart problems. Her father Robert had been born with heart problems also, and he and his
wife were pleased that Charlotte would be cared for by Mr Wisheart, as Robert had also
been in his care for many years. Mrs Cummings went on to describe her interaction with the
BRI in the months leading up to Charlotte’s operation. The operation took place in
June 1988. Several months later Charlotte was turned down as a suitable candidate for a
heart transplant as she was too ill. In February 1989, following several spells in the
hospital, she was readmitted for the final time to the Bristol Childrens Hospital, where
she died. Mrs Cummings expressed her satisfaction with the care her daughter and her
family had received from Mr Wisheart.
|
FULL TRANSCRIPT
1 Day 3, 18th March, 1999
2 (9.30 am)
3 THE CHAIRMAN: Ladies and gentlemen, do forgive me for being
4 five minutes late. There were some technical matters we
5 had to resolve. I will try not to let it happen too
6 many times.
7 Before we start this morning's proceedings, may
8 I refer to two matters which arise from yesterday.
9 First, I have issued a further document on
10 re-examination which will be put into the public record
11 and has, I understand, been made available or will be
12 made available to legal representatives by Mr Langstaff.
13 Secondly, there is the question of Mr McLorinan's
14 medical records and the more general point raised
15 thereby through Mr Sharp's helpful intervention
16 yesterday afternoon. Mr Langstaff will speak to this,
17 and I believe to one other matter, and then we will
18 proceed.
19 MR LANGSTAFF:
20 STATEMENT ABOUT RECORDS AND
21 COMMUNICATIONS FROM THE PUBLIC
22 MR LANGSTAFF: Thank you, Chairman. As a result of what
23 Mr Sharp raised yesterday in respect of Mr McLorinan,
24 you asked that an enquiry be made as to when this
25 Inquiry had received Mr McLorinan's record. The
0001
1 information which we have is this: that it was first
2 received by this Inquiry on either 8th or 9th February.
3 It was first logged in on 9th February, and it was
4 returned to the Bristol Trust on 26th February.
5 In order to clarify the arrangements which are
6 made for receiving and returning such records, from the
7 outset, when the Inquiry began the clinical records
8 discovery process, it agreed an arrangement with the
9 UBHT for returning any record if it should be needed
10 whilst in the possession of the Inquiry.
11 On the dozen or so occasions when a set of
12 clinical notes was required in an emergency, they were
13 returned by hand to Bristol, either on the same day but
14 in any event, within 24 hours. On those fewer occasions
15 where the Trust requested the return of records but
16 indicated that there was no emergency, they were
17 returned by the next available secure courier service.
18 The Inquiry has not had any complaint from the
19 UBHT that any record requested has not been returned, or
20 that there has been any delay in the return of those
21 records.
22 May I say that I have had made available to me and
23 seen a record of the ins and outs of the various files
24 which supports that which I have said.
25 THE CHAIRMAN: Thank you, Mr Langstaff.
0002
1 MR LANGSTAFF: The second matter is one raised with me by
2 the Secretariat. The Inquiry has recently received an
3 anonymous letter which makes allegations about attempts
4 to cover up information. I mention this not to
5 publicise the letter in question -- indeed, we will not
6 be doing so -- but to raise a wider point. As
7 I emphasised in my opening, this Inquiry is inclusive
8 and comprehensive, and we do want to hear from as many
9 people as possible. But we will not act on anonymous
10 information.
11 May I remind people, however, that they are at all
12 times free to contact us in confidence in the first
13 instance. There is, you will appreciate, a difference
14 between confidentiality, which we will at all times
15 respect, and anonymity, which indicates to us that there
16 is no proper point in taking matters further.
17 THE CHAIRMAN: Thank you, Mr Langstaff. Now perhaps we can
18 begin this morning's proceedings.
19 MR LANGSTAFF: Mr Curnow, please.
20 Mr Curnow, you have been here at least yesterday
21 in part. You know our procedure. Would you like to
22 stand for the oath?
23 MR MALCOLM CURNOW (SWORN):
24 Examined by MR LANGSTAFF:
25 Q. Mr Curnow, you are Philip Malcolm Curnow?
0003
1 A. That is correct.
2 Q. And you have been very much involved, I think, in the
3 Bristol Parents' Children's Heart Action Group?
4 A. Yes, I have.
5 Q. You are going to tell us about what happened to your
6 daughter Verity?
7 A. That is correct.
8 Q. She was born, was she, on 22nd December 1989?
9 A. Yes.
10 Q. At Tiverton?
11 A. At Tiverton District Hospital.
12 Q. And at first appeared to be a perfectly normal baby?
13 A. Yes, Mr Chairman. Our daughter was our first child.
14 It was a normal pregnancy, and Verity was delivered at
15 38 weeks by normal delivery at the Tiverton District
16 Hospital. She remained in the hospital for a period of
17 four days, which was a statutory period for a first
18 child. Everything appeared to be normal. Obviously we
19 were extremely relieved when Verity was born and we did
20 the initial checks to ensure she had 10 toes and 10
21 fingers and that everything appeared for a first child
22 to be 100 per cent.
23 Q. Can I move matters on to when you first heard there
24 might be something untoward about Verity's condition?
25 A. We returned home on the fourth day and my wife obviously
0004
1 started to care for her at home. On the third day at
2 home, on the daily visit of the midwife, she arrived
3 when Jane, my wife, was breastfeeding Verity in the
4 bedroom. I took the midwife up and she went into the
5 bedroom and noticed that Verity appeared to becoming
6 cyanosed, i.e. blue around the lips and she was
7 struggling to feed at the breast. The midwife came out
8 of the room and expressed to me her concern something
9 was not quite right and she wanted to call our local GP
10 to attend as soon as possible.
11 Within about 20 minutes, our local GP,
12 Dr Strachan, arrived at the house and examined Verity in
13 the presence of my wife whilst they were still in bed.
14 He agreed with the opinion of the midwife, and as
15 a result of that advised us that he would make
16 arrangements to take her to our local hospital, the
17 Royal Devon and Exeter Hospital at Exeter, later that
18 day. That is in fact what we did.
19 Q. So you got there on 29th December 1989?
20 A. Yes, Mr Chairman. We arrived at the Royal Devon and
21 Exeter Hospital obviously very concerned. We had gone
22 from the highest of highs of having our first child to
23 now obviously total confusion as to what the future lay
24 in store. At this point, all we knew was that something
25 was amiss.
0005
1 We arrived at the hospital and it was in the early
2 part of the afternoon. We were greeted by the medical
3 staff and the nursing staff, and I remember a comment
4 from one of the nurses that said that Verity looked
5 slightly dusky. At that point, we had not noticed
6 anything unusual about her.
7 Q. Could I just stop you there? When the midwife said what
8 she said to you, had she noticed anything?
9 A. No, this was the first time that the midwife had
10 detected anything. She visited on the two days prior to
11 detecting something, but it would appear when Verity was
12 under normal conditions, there was no evidence of
13 cyanosis; it was only when she became stressed or
14 exerted herself that she showed signs. Obviously she
15 was having trouble breastfeeding, and obviously, because
16 of the problems that she was having in breastfeeding,
17 that was when the evidence of the cyanosis began to make
18 itself first evident.
19 Q. Did you or your wife Jane notice the slight tinge of
20 blueness or not?
21 A. No, not at all.
22 Q. So you had not noticed anything and this had been picked
23 up by the midwife in the first place?
24 A. Correct.
25 Q. And by the nursing staff who said that Verity looked
0006
1 slightly dusky in the second?
2 A. That is correct.
3 Q. As a result of that, an examination was carried out by
4 a paediatrician?
5 A. Yes, it was. We were taken up on to the ward and during
6 the latter part of the afternoon, obviously, once she
7 had been established on the ward, we were seen by the
8 paediatrician at Exeter, whom I recall as being
9 Dr McNinch. He examined Verity and was quite vague in
10 his explanation to us as to what was wrong. My
11 impression was that he did not really know what was
12 wrong.
13 Q. Can I again ask you to pause there -- I am sorry to ask
14 you to break your flow, but you tell us in your
15 statement that he made what you describe as
16 a speculative diagnosis of transposition of the great
17 arteries?
18 A. Yes, that is correct.
19 Q. So that is what he said to you, is it?
20 A. Yes, it was.
21 Q. And the "speculative", is that his word or your
22 description of how he put it?
23 A. That is my description of how he put it. He was very
24 vague in his explanation and admitted he was not sure
25 exactly what Verity's problem was, but in his opinion
0007
1 the most likely problem was what he explained as
2 transposition of the great arteries, and he drew a very
3 simplistic diagram to me on the ward to explain what
4 that meant.
5 Q. Simplistic it may have been, but did it convey
6 sufficient for you to understand what he thought might
7 be wrong?
8 A. Yes, it did. I had spent some time in my childhood in
9 the St John's Ambulance and prior to meeting my wife,
10 I lived with an intensive therapy unit nurse for two
11 years, so I had many visits to ITU units and was quite
12 familiar with the explanation that he gave me.
13 Q. I think that night Verity stayed in the hospital?
14 A. Yes, she did.
15 Q. And you and your wife?
16 A. We were not allowed to stay because there were no
17 facilities.
18 Q. Did you want her to stay?
19 A. Very much. My wife was extremely distressed at the fact
20 that no facilities were available to allow even her to
21 remain on the ward, which is what she wished to do.
22 Q. You appreciate that our Inquiry, of course, is into the
23 Bristol hospitals and not into the Exeter hospital?
24 A. I do.
25 Q. One of the points which has been made so far by parents
0008
1 giving evidence is that rooms which were provided at
2 Bristol may not have been very satisfactory for one
3 reason or another, or there may have been a shortage of
4 them, or they may have been required to move on rather
5 quickly.
6 In the case of Exeter at any rate, there were no
7 rooms at all?
8 A. No, that is correct.
9 Q. So if one were carrying a torch for Bristol, one might
10 say at least in this respect, Bristol was better
11 equipped than some district hospitals?
12 A. Very much so. At least Bristol were able to provide us
13 with some accommodation, restricted, uncomfortable and
14 as inappropriate as it was, at least it was something
15 which was unavailable at Exeter.
16 Q. The next day, did Verity move from Exeter to Bristol?
17 A. Yes, she did. Dr McNinch explained that obviously she
18 needed further tests in order to establish exactly what
19 was wrong with her and that these tests were unavailable
20 at Exeter, and that she would be transferred to Bristol
21 Children's Hospital where the facilities and the
22 equipment and the staff were present to undertake these
23 further diagnostic examinations.
24 Q. You do not deal with the process of how Verity got from
25 Exeter to Bristol in any detail in your statement. Did
0009
1 she go by ambulance?
2 A. Yes, she did. An ambulance was arranged. We returned
3 to the hospital early that morning in our own car and
4 Verity was conveyed to the hospital in Bristol by
5 ambulance with us following behind in our own vehicle.
6 Q. So far as you know, were there any specialists in the
7 ambulance?
8 A. I am not exactly sure who was in the ambulance, other
9 than that obviously there was nursing staff with her.
10 I believe there was a doctor with her as well.
11 Q. Was the ambulance, so far as you know, sent from Bristol
12 to pick her up, or did it go from Exeter?
13 A. I have no idea of that.
14 Q. In any event, there she is, on 30th December, admitted
15 to the Bristol Children's Hospital. Was it Ward 37?
16 A. Yes, it was.
17 Q. You understood, did you, that she would be catheterised
18 to examine what the state of her heart was?
19 A. Yes. That is the reason that we were sent to Bristol,
20 so our whole reason for being there was to have Verity
21 undertake these catheterisations to establish the cause
22 of what exactly her problem was.
23 Q. Who indicated that procedure?
24 A. The procedure for catheterisation was done by Dr Steve
25 Jordan.
0010
1 Q. Did he speak to you afterwards?
2 A. Yes, he did. He explained to us what the problem, as he
3 saw it, was with Verity. He explained to us that her
4 problem was known as pulmonary atresia, and that she had
5 a ventricular septal defect. This was explained to us,
6 also the fact that when Verity was in the early stages
7 of birth in the womb, within the first five weeks when
8 we believe the pulmonary artery was being established,
9 it failed to form to its correct size. He explained in
10 Verity's case a secondary system had evolved within her
11 body of supplementary pulmonary arteries which were very
12 small in diameter and that the hole in the heart, the
13 ventricular septal defect, was Verity's compensator
14 mechanism to allow her to function. That was explained
15 by Dr Jordan.
16 Q. I think you have subsequently come to know the diagnosis
17 of her condition was pulmonary atresia, the ventricle
18 septal defect, and multiple aorta pulmonary collateral
19 arteries?
20 A. That is correct, yes.
21 Q. Did you understand that explanation?
22 A. Yes, I did.
23 Q. What did he tell you could be done, or should be done
24 about it?
25 A. At that point the explanation given to us by Dr Jordan
0011
1 was that the vessels that Verity had at that stage were
2 too small to undertake any corrective measures at that
3 time. Verity, even at that stage, appeared to be very
4 well. She was small at birth weight, 5 pounds 12
5 ounces, but she appeared and was behaving at that stage
6 as a normal healthy child. She required no medication,
7 so his prognosis was that we should take Verity home,
8 feed her up, make sure that she gains weight, so if all
9 went as well as possible, there was a chance her own
10 arteries developed as she grew, either to the point she
11 would not need corrective surgery, or if it was
12 required, they would be much larger and they would be
13 able to operate on them at some point in the future.
14 Q. You say this was expressed to you as a chance, that the
15 arteries might grow?
16 A. Yes.
17 Q. Did that mean that the downside of what Mr Jordan was
18 conveying to you at that time was that there was also
19 a prospect that they might not grow?
20 A. Yes. That was made perfectly clear.
21 Q. So it was all, as it were, in the lap of fate?
22 A. Yes, it was. My feeling was, and the impression that we
23 received from the medical staff, was that there was
24 nothing life-threatening at this point. Everything was
25 satisfactory; she was coping well with the system that
0012
1 she had in place to supplement the defects, and there
2 was no concern expressed and that we needed to just now
3 look after her, feed her up, undertake the checks that
4 would be notified to us by the hospital, and in due
5 course they would review the situation and decide on
6 what future action was necessary, depending upon the
7 outcome of that.
8 Q. So when you left the Bristol Children's Hospital after
9 speaking to Dr Jordan, you knew that Verity's chances in
10 life very much depended on how things worked out over
11 the next few months?
12 A. Well, certainly we knew that we had a future in store of
13 further visits to the hospital. I remember spending New
14 Year's Eve with my wife in a public-house on
15 St Michael's Hill, where we were totally unaware of what
16 the future had in store. At that point, we had not been
17 made aware of what the outcome of the examinations were,
18 so we were very much in the dark and feeling very much
19 alone and very depressed at the fact that we did not
20 know what the future had in store. I think everyone in
21 that situation looks very much to the black side.
22 However the information that we received after
23 that from Dr Jordan, that gave us encouragement that the
24 situation was nowhere as bleak as we perceived it to be
25 with no information at all, so we were very optimistic
0013
1 with the future at that point.
2 Q. Just so I can get those events in order, you were in the
3 public-house with your wife. Was that before Dr Jordan
4 spoke to you about the results of the catheterisation?
5 A. Yes, it was.
6 Q. When he spoke to you about the results of the
7 catheterisation, he was saying to you, "Well, there is
8 no immediate emergency", which is what you had been
9 frightened about, was it?
10 A. Yes, it was.
11 Q. She looks well; she will do well, but her long-term
12 chances depend on how her arteries grow?
13 A. That is correct.
14 Q. That was the message he was giving you?
15 A. Yes, it was.
16 Q. So you knew that although the immediate problems were
17 overcome, there may be longer term ones?
18 A. We certainly knew there were longer term implications.
19 We knew for example, at that stage, as I described it,
20 Verity would never be an Olympic athlete. We knew that,
21 we accepted that, but we were fully confident that we
22 would have our child for the rest of her natural life
23 and the rest of our lives and that there would be
24 further interventions by hospitals at some point in her
25 future, but we were very confident that at this stage
0014
1 there was nothing untoward about Verity's condition that
2 gave us undue cause for concern.
3 Q. So the way that Dr Jordan put it to you, saying, "Well,
4 we hope that the arteries will grow", was something you
5 took comfort from?
6 A. Yes, it was, and we also had the consolation from him
7 that if they did not grow, that there was an operation
8 which they could do which he referred to as the "shunt
9 operation" which would obviously deal with it, but we
10 needed to get Verity to the stage where her arteries
11 were large enough to perform that operation, if it
12 became necessary.
13 Q. So the arteries might either grow, or if they did not
14 grow, then you would need a shunt. Provided they had
15 grown enough?
16 A. Correct.
17 Q. Did he deal with the situation, either expressly or by
18 implication in what he said, of what might be the case
19 if they did not grow?
20 A. No, not at all. That was the information we had. We
21 had basically two sets of options. One was that
22 Verity's arteries would grow of their own accord and
23 that that would be satisfactory if they developed of
24 their own volition. If they did not develop of their
25 own accord, surgical intervention would be necessary by
0015
1 means of a shunt operation, but that would do the job of
2 giving her the oxygenation she required.
3 Q. I am going to ask, please, on my screen, to have
4 2374/105.
5 What you are looking at is a document -- I do not
6 know if you have seen this before. I think you have had
7 a look at your daughter's medical records, have you?
8 A. Yes, I have.
9 Q. This is a letter from Mr Jordan and it is discussing the
10 findings that he made at the original catheterisation?
11 A. Right.
12 Q. The second paragraph of this page:
13 "These findings were discussed with Mr Wisheart --
14 MRS HOWARD: Mr Langstaff, may I interrupt you for
15 a moment. Could you remind me of the date of this
16 letter, please?
17 MR LANGSTAFF: Certainly. Can we go back to page 105,
18 please? (Page shown to panel only).
19 MR LISSACK: Can we know what date it is?
20 THE CHAIRMAN: Should that date not be made available to
21 everyone?
22 MR LANGSTAFF: Certainly. Let us put 105 on the screen, so
23 everyone can see the record.
24 THE CHAIRMAN: Are you content for it to be seen?
25 MR LANGSTAFF: I am, yes. It is a "Dear Doctor" letter,
0016
1 a discharge letter dated 15th February 1990. It goes to
2 the GP with a copy to the paediatrician at Exeter. It
3 describes the condition of Verity: rather small birth
4 weight, as you said. It deals with the examination, the
5 chest x-ray, the catheterisation:
6 "Confirm the basic anatomy, pulmonary blood supply
7 comes partly from branches arising from subclavian
8 arteries, partly from the descending aorta. None of
9 these are very large. The aortic artery is
10 right-sided. There is something of what appeared to be
11 small central right and left pulmonary arteries filling
12 [I think it is] through the collateral vessels, but
13 these are very small, approximately 1.5 mm in diameter
14 at the widest point."
15 Then the paragraph I was asking you to focus on:
16 "These findings were discussed with Mr Wisheart
17 and it was felt that the current size of the central
18 pulmonary arteries precluded any attempt at shunting
19 [that is what you had been told]. It is actually
20 unlikely that these will grow, but consideration will be
21 given to a further catheter towards the end of the first
22 year."
23 Those words, "it is unlikely these will grow", how
24 far does that correspond with what you were told, as you
25 recall it?
0017
1 A. It is not at total variance. As is stated, we were told
2 there was a chance they may well grow, and if they do,
3 no intervention would be necessary. If they did not,
4 the option of the shunt was there for her.
5 Q. Can we have the screen back?
6 A. May I add, we were certainly not told at that stage that
7 it was unlikely that they would grow.
8 Q. Can we look, please, at 2374/102? This is a letter from
9 the GP, your GP, to Dr Jordan, 23rd February 1990, so
10 very shortly after the discharge note, the "Dear Doctor"
11 letter we have just seen:
12 "This baby is now seven weeks of age, diagnosed by
13 yourselves as having pulmonary atresia with VSD, with
14 I understand a very small or non-existent pulmonary
15 artery which makes immediate surgery impossible. She
16 has been reviewed in Exeter by Dr McNinch. The parents,
17 who are extremely sensible, understand the situation
18 well and are coping admirably. Verity is gaining
19 weight.
20 "They have requested for genuine reasons that
21 they are followed up in your clinic in Bristol rather
22 than being seen in Exeter and if it were possible to
23 arrange this, I would be most grateful.
24 "I am sure this stems from the positive and
25 helpful way the family were treated during their stay in
0018
1 Bristol when Verity was a week old.
2 "They remain optimistic, but do realise the
3 precarious position that Verity is in."
4 Is that a fair reflection of what you were feeling
5 at the time?
6 A. We were certainly aware that Verity, as I said, was not
7 going to be normal for the rest of her life. We knew
8 that surgical intervention was certainly a possibility.
9 We did not know whether it was a probability or not, and
10 we understood the situation to be precarious as it is
11 said there, in view of the fact that the next 9 months
12 were very much in the hands of the Gods. We did not
13 know whether they would grow or would not grow. We did
14 not know whether a shunt operation was going to be
15 required or whether it was not. Our concern was to keep
16 Verity well, which we were doing, but we knew that the
17 future was uncertain and that was our understanding of
18 the situation.
19 Q. So your use of "precarious" by the GP, if it were
20 interpreted to give the impression that you knew that
21 Verity was on a knife-edge between survival and death,
22 that would be wrong?
23 A. That would be wrong.
24 Q. As you see it, what was precarious was whether she would
25 need the operation or not?
0019
1 A. Correct.
2 Q. You plainly expressed to Dr Strachan that you
3 appreciated the way you had been dealt with at Bristol?
4 A. That is true. As I stated, our dealings at Exeter were
5 not confidence-inspiring in the way that the information
6 they gave us was vague, in the way that we were
7 treated. Comparing that with the way we were treated at
8 Bristol and naturally as parents wanting to secure the
9 best possible care that we could for our daughter, we
10 felt that we were more than prepared to undertake the
11 journey of 70 miles each way to take her to Bristol to
12 have her seen by the experts, who at that stage we had
13 total confidence in, rather than remain at her clinics
14 at Exeter where we did not have the same level of
15 confidence.
16 Q. So in fact, far in a sense from your being referred to
17 Bristol in ignorance of what awaited you at Bristol, you
18 wanted to go?
19 A. Correct.
20 Q. Can we move on to how Verity progressed during 1990?
21 She put on weight, did she?
22 A. Yes, she did. We were shown the percentile charts and
23 Verity maintained a stable progression in gaining
24 weight, slightly below the third percentile, so she was
25 gaining weight at a normal weight, although her low
0020
1 birth weight obviously put her at a slight disadvantage.
2 Q. Did she show any signs in the first three or four months
3 of the year of blue tinges?
4 A. Obviously, having been made aware of it at our first
5 visit to the hospital, we as parents were then very
6 conscious of looking for it. What we noticed was when
7 Verity was at rest, when she was behaving normally,
8 there were no signs at all of cyanosis. However, as she
9 developed and began to move around more, again, when she
10 exerted herself, when she, in our opinion, over-exerted
11 herself, that was when, then, we became clearly aware of
12 the tinges of blueness in her lips and the slight
13 duskiness that would appear over her facial features.
14 Other than that, she appeared to be developing
15 normally. Anyone who saw her, any friends, family that
16 came to visit, anyone that the wife came across in the
17 town with her, saw nothing wrong with her at all; it was
18 only when she was exerting herself that this became
19 evident.
20 Q. And perhaps when she had an infection?
21 A. Yes. There was a point of time which I believe was
22 round about 4th July 1990 when Verity contracted an
23 infection, and again, I have to say that our GP was very
24 good in the care that he gave to my wife and to Verity,
25 and she was taken initially, as a precautionary measure,
0021
1 to make sure everything was okay. So as a result of
2 that, it was felt because of our dealings previously
3 with Bristol, that we would take her to Bristol at that
4 request, which is what we did.
5 Q. And may we just look at 2374/93 in relation to the visit
6 to Bristol in July 1990? Again, this is a discharge
7 summary:
8 "Verity, who is due to be admitted anyway for
9 a repeat cardiac catheterisation in a few months, was
10 transferred from the Royal Devon and Exeter Hospital
11 because of increasing cyanosis. On examination she was
12 markedly cyanosed with no obvious murmur."
13 That description "markedly cyanosed" is obviously
14 a doctor's description, but does it accord with your own
15 view of how she appeared at that time?
16 A. At that time she did, because her infection was a chest
17 infection, which obviously caused difficulty in her
18 breathing as a result of it. Because of the difficulty
19 that she had in breathing due to the infection,
20 obviously this was putting her under further stress,
21 which is resulting in the blueness which now was more
22 prevalent on a daily basis because of the infection.
23 Obviously, when the hospital saw her, she still had the
24 infection and was showing signs of cyanosis.
25 After our visit to the hospital, when she had
0022
1 recovered from the infection, then she returned to the
2 state she was previously, where it was only in the
3 process of over-exertion that it made itself evident.
4 Q. So following the admission on 4th July, she had
5 a further catheterisation, did she?
6 A. Yes, as stated, she was due for a repeat
7 catheterisation, but in view of the fact we were there
8 at Bristol for the purposes of the infection, then it
9 was prudent to undertake a catheterisation at that time,
10 which is in fact what they did.
11 Q. So she has now been catheterised twice?
12 A. Correct.
13 Q. On both occasions by Dr Jordan?
14 A. Yes, to my knowledge.
15 Q. Did Dr Jordan report to you on this occasion as to
16 essentially what he had found at this repeat
17 catheterisation?
18 A. I have no real recollection of what Dr Jordan said at
19 that particular time regarding that one, but --
20 Q. Just pause for a moment. Did he actually say something
21 to you by way of explanation?
22 A. Obviously he came to see us when he stated that he was
23 going to undertake this catheterisation, that whilst she
24 was here, this would be a good time to take advantage of
25 that, and obviously, we concurred with that. When he
0023
1 returned to us, he gave us no new information that we
2 were not already aware of; there was nothing significant
3 in changes to Verity, either for the positive or for the
4 negative; it was a status quo situation, as we
5 understood it.
6 Q. So what was the next step going to be?
7 A. As the situation, you know, had not progressed either
8 for the better or had not deteriorated, we left the
9 hospital with Verity, again with no further medication,
10 but now believing that we were looking at the
11 possibility of a shunt operation as the next course of
12 action. We were aware at that stage that her vessels
13 had not grown normally, and that at that stage, then,
14 the likelihood of them developing of their own accord
15 was minimal, so we were now veering towards the feeling,
16 both from the information given to us by the hospital,
17 that we were moving down the path of corrective surgery.
18 Q. Can we have a look for a moment -- just put it on the
19 screen so everyone can see -- witness statement 4,
20 page 4? It is your statement, paragraph 8, that I want
21 to have a look at.
22 You set out here what you were told, I think. You
23 had gone home thinking that the next step was going to
24 be the operation. You say in your statement you were
25 told by Dr Jordan?
0024
1 A. Yes.
2 Q. Were you actually told?
3 A. As I say, the discussion was along the lines of very
4 much, "Look, the arteries have not developed of their
5 own accord. She has not deteriorated. The next way
6 that we can deal with it is by means of the shunt
7 operation". We accepted that and, as I say, we left the
8 hospital believing that that was the next course of
9 action. So it was -- I cannot say for certain whether
10 he told me that that was the next course of action
11 definitively, or whether it was intimated, but we left
12 the hospital with the impression that the shunt
13 operation was going to be the next course of action.
14 Q. So one way or another, whatever was said, you had
15 a clear understanding that was what was going to happen?
16 A. Yes.
17 Q. You say in your statement that was consistent with what
18 you had already been told and you therefore agreed?
19 A. Yes.
20 Q. How did you feel about that? Did you feel this was
21 a step back or did you feel this was just par for the
22 course?
23 A. I think we felt it was very much par for the course.
24 Obviously, as had been identified previously, you know,
25 we were reasonably sensible people. We were accepting
0025
1 the information that was given to us at face value.
2 I understood as best as I could under those
3 circumstances what the consequences of an operation
4 were, and also, what the consequences of the fact that
5 her vessels had not developed would be.
6 So therefore, once you accept that surgical
7 intervention is necessary, then that was viewed by us as
8 a positive thing and not a negative thing.
9 Q. You go on, in paragraph 8, to say you received no advice
10 as to the choice or quality of the hospital where the
11 procedure was to be conducted, nor any advice as to the
12 type of operation your daughter was to undergo. It is
13 probably fair to say, is it, at this stage you had
14 confidence in Bristol?
15 A. Yes.
16 Q. You had asked to be referred to Bristol?
17 A. Very much so.
18 Q. Am I right in suspecting that if someone had said "What
19 about Birmingham or Great Ormond Street?" you would have
20 said "We will go to Bristol, please"?
21 A. No, that is not entirely correct. As I said before, any
22 parent in that situation only wishes to do the very,
23 very best thing for their child. Once we had accepted
24 the fact that she was going to need corrective surgery,
25 all we wanted to give her was the best chance that
0026
1 a parent can give their child for that child. We had
2 said, both to our GP as well as to ourselves, that we
3 were prepared to take our daughter Verity anywhere in
4 this country and anywhere in the world, if it was
5 necessary, in order to secure the best possible care for
6 her.
7 When we discussed that amongst ourselves, and with
8 our GP, we had no other information other than there was
9 no need; Bristol was our regional centre. We were told
10 that they had the facilities and the staff, and were
11 more than capable to do this operation, and as a result
12 of the way that we had been treated previously, we
13 accepted that.
14 I cannot say for certain what I would have said if
15 somebody had said to me, "Well, there are choices; you
16 could go to Great Ormond Street, you can go to
17 Birmingham or to America". If I had been given the
18 choices, then I would have looked at the options and
19 weighed them up on their merits. As I was given no
20 options, I accepted at face value that Bristol was the
21 best option.
22 Q. You as a parent understandably wanted to do the best for
23 your daughter?
24 A. Correct.
25 Q. You had already decided you were not going to be seen by
0027
1 Dr McNinch at Exeter, you wanted to go to Bristol
2 because they treated you better and seemed to know
3 rather more what they were doing?
4 A. Yes.
5 Q. So you were happy to say "I will go there"?
6 A. Yes.
7 Q. You were able to ask whether there was somewhere else
8 that might have been better?
9 A. We did ask. As I say, we asked our GP what the options
10 were, and as I say, the only information we ever
11 received was that Bristol was our regional centre, it
12 was more than confident, and it was also stated,
13 I cannot recall by whom, but the impression was, why go
14 to the problem and trouble of taking her elsewhere when
15 you have a centre basically on your doorstep, and again,
16 that is a factor all of us take into account when making
17 a decision. But you are right, we had every confidence
18 at that point in time in what was being offered to us at
19 Bristol.
20 Q. So the answer is, you did ask and you were given advice?
21 A. Yes.
22 Q. You could have asked "Is there anywhere else?" but
23 because of what you were told, you did not pursue that
24 line of enquiry?
25 A. No, I did not pursue that line of enquiry.
0028
1 Q. You then waited for the operation, which you understood
2 was going to take place 9 or 10 months after birth?
3 A. Yes. The advice we had been given from the outset was
4 that the optimum time, as it was put to us, for a shunt
5 operation, would be when Verity reached the age of 9
6 months. Again there was no question she was not going
7 to reach the age of 9 months, so from the very outset
8 this point in time of 9 months was very uppermost in our
9 minds. Once we knew the shunt operation was necessary,
10 then we were focusing our attention on what would be for
11 her September 1990.
12 As time progressed and we undertook the monthly
13 check-ups at Bristol, and we got to the end of July, the
14 beginning of August, I was feeling we should have been
15 having some notification from the hospital, some
16 communication, about making arrangements for her being
17 admitted for this operation. And I was receiving
18 nothing. Again, as a parent, I had been told that
19 9 months would be the optimum time. There was no way
20 I was going to allow it to extend beyond that period, so
21 I began to exert pressure on the hospital, asking for an
22 appointment.
23 Q. Could I again just ask you to pause there for a moment?
24 Catheterisation, obviously, was an operation?
25 A. Yes.
0029
1 Q. And Verity had had two of those, and one of those at
2 short notice because of her admission in July 1990?
3 A. Correct.
4 Q. But those operations obviously you understood to carry
5 much less risk than the operation which she was going to
6 undergo?
7 A. Yes.
8 Q. And presumably, you understood that those operations
9 were exploratory rather than curative?
10 A. Correct.
11 Q. So that this operation was of a different category?
12 A. Very much. I was perfectly aware that the two previous
13 catheterisations were exploratory, in order to determine
14 the extent of the problem, and to enable the nursing and
15 medical staff to determine what the most appropriate
16 course of action was. I was perfectly aware that this
17 next operation was the first in what may be a process of
18 operations, in order to surgically correct her
19 malformation.
20 Q. The timing of the catheterisations was not perhaps
21 particularly critical, but you understood the timing of
22 this operation to be critical?
23 A. Yes.
24 Q. Critical in what sense?
25 A. Again, it was given to us that, as I stated, 9 months
0030
1 was the optimum time to carry out this operation.
2 I understood that in the 9 month period from her birth,
3 they would have determined whether (a) the vessels
4 themselves were going to grow of their own accord, which
5 they did not; that as a result of the repeat
6 catheterisation, nothing had improved or nothing had
7 deteriorated; and that on the advice that we were given,
8 that in order to make Verity's condition as well as she
9 could be at the earliest opportunity, then 9 months
10 would be the time. Any earlier would be too soon and
11 any later would have been no benefit. But 9 months was
12 the optimum time, and that is what we were working to.
13 Q. Any later, no benefit, or possibly harmful, as you
14 understood it?
15 A. It was given to us as no benefit. She was remaining in
16 a status quo situation. She was not getting any better,
17 but neither was she getting any worse, in our opinion.
18 Q. Did anyone ever discuss with you how long it might be
19 left?
20 A. Never.
21 Q. What was your understanding about how long it might be
22 left?
23 A. Our understanding was that we were coming back in
24 9 months for a shunt operation.
25 Q. I am not sure that is quite an answer to the question
0031
1 I was asking, which was: plainly, you thought it
2 desirable she should have this serious operation?
3 A. Yes.
4 Q. You understood, nonetheless, if she did not have the
5 operation, she would go on in status quo?
6 A. Yes.
7 Q. If she would go on as she was and if she was, in
8 general, a healthy baby, except when she exerted herself
9 and got a bit blue, or when she had an infection and got
10 a bit blue, why did she need the operation at all, as
11 you saw it?
12 A. Basically, we were told that if she remained in that
13 status quo situation, she would probably go on until she
14 was in her early teens, at which point, obviously,
15 through her bodily development, as she grew her
16 condition would probably become worse. Obviously, her
17 vessels, as they were, were able to supply her at her
18 present size, but the likelihood, with when she got
19 towards adulthood, would be problematical. So we
20 expected at that stage that if surgical intervention was
21 not undertaken at that point, that that would be the
22 situation of gradual deterioration, and as she neared
23 sort of her teenage years.
24 Q. You speak -- we can perhaps still see it on the screen,
25 if it is on the public screen -- in paragraph 9, about
0032
1 the pressure that you put on to fix the operation date?
2 A. Yes.
3 Q. And you were told a month beforehand, I think, roughly
4 a month beforehand, the date of the operation. You are
5 the second parent to speak to us about the problems in
6 perceived delay in setting operation dates. What do you
7 say about being told a month in advance of an
8 operation?
9 A. There was no problem in the fact that we had a month's
10 notice; the problem was that we had no information prior
11 to that, or confirmation that this was going to happen.
12 We were left very much in abeyance and in the dark. If
13 someone had said to us, "She will have an operation, it
14 will be around September time, and we will give you
15 a month's notice", then that would have satisfied
16 myself. I was receiving no information back from the
17 hospital about the likelihood of her having an operation
18 at that point in time and I was wanting to know. You
19 know, I needed to plan, we needed to plan. A month is
20 acceptable, I have no criticism of that, but I would
21 have liked a lot more information in the lead-up to it
22 that this was going to happen. We were left with the
23 impression that it could, or it may not. All I wanted
24 to know was that it was going to happen; nothing more.
25 Q. Let us move on to the operation. That is in September
0033
1 1990?
2 A. Yes. We were scheduled for an operation on
3 12th September 1990. We were told to report to Ward 37
4 of the Bristol Royal Hospital for Sick Children on
5 14th September 1990, which we did.
6 Q. So you were admitted into the Bristol Children's
7 Hospital. Where did the operation actually take place?
8 A. At the Bristol Children's Hospital.
9 Q. Your memories, please, of what happened after your
10 admission?
11 A. We arrived at the hospital and we were taken straight to
12 Ward 37, and I remember walking into the ward and my
13 recollections are that there were a number of
14 glass-sided individual cubicles running down the
15 left-hand side of the ward. Immediately on the right
16 was the access to the ITU and obviously we could see
17 a number of children in there on our arrival. I was
18 aware of it being the ITU from my previous experience of
19 being in them. Further along was the nurses room and
20 further along to the right was -- I can only describe
21 it, if you like, as more of a family room, more of
22 a children's ward. It had a number of beds in it with
23 toys and there were approximately four or five beds in
24 that ward, being as a ward. There was access off to the
25 accommodation area situated off of that. So we were
0034
1 accepted on to the ward; we were shown to a cubicle; we
2 were given access to an individual room with a single
3 bed, as our accommodation for the period that we were
4 there.
5 Obviously, Verity was admitted and she was
6 prepared and accepted into the ward, and we settled
7 ourselves into that environment.
8 Q. What happened on the evening of 10th September?
9 A. Obviously, once we had established ourselves in the
10 hospital, on the very first evening, obviously, a number
11 of nursing and medical staff came and undertook a number
12 of checks. The one that sticks in my mind and will
13 remain with me for ever, until the day I die, is the
14 arrival of a doctor. He was of foreign descent, I did
15 not know his name then and I do not know his name now.
16 He arrived and at the time my wife was nursing Verity in
17 the chair beside her cot. He wanted to take blood from
18 Verity and he tried several times to extract blood from
19 her left arm. He was having great difficulty in doing
20 so. He did not appear to me to be competent and
21 proficient in trying to extract the blood. I had seen
22 GPs take blood from her, I had seen doctors on previous
23 occasions take blood from her with the catheterisations,
24 and in my professional capacity, I had seen samples of
25 blood taken on hundreds of previous occasions, but
0035
1 I immediately was unhappy with the way that this was
2 being done.
3 He persisted several times trying to take blood
4 from her left arm and could not withdraw a sufficient
5 sample to satisfy him.
6 Obviously, this was distressing Verity greatly.
7 She was becoming increasingly blue and agitated; she was
8 crying in a most piercing, painful sort of way. My wife
9 was becoming distressed. He then asked and attempted to
10 take blood from her heel.
11 On the first attempt, the pain was so excruciating
12 for Verity that she began to, obviously, move violently,
13 to the point that was itself exacerbating the
14 situation. I had to take over, my wife could no longer
15 restrain Verity. I had to take hold of her physically
16 in a restraint position and actually force her leg into
17 a position where it would remain static whilst he took
18 the blood.
19 My lasting memory, as he inserted the needle into
20 her foot, was her looking at me as if to say in her
21 eyes, "Daddy, why are you letting them do this to me?"
22 and that look in her eyes will last with me until
23 I die.
24 He took the sample and he left the room, and we
25 never saw him again.
0036
1 Q. Later that evening, you think you met Mr Dhasmana?
2 A. That is correct, for the first time.
3 Q. And did you discuss what was to happen at the
4 operation?
5 A. Yes, we did.
6 Q. What did he tell you?
7 A. He explained to us that he was going to do a central
8 shunt.
9 Q. Did he explain what a central shunt was?
10 A. Yes, he did.
11 Q. Did he explain how it was to be performed?
12 A. Yes, he did. We were sat in the cubicle. My wife was
13 sat in the same chair nursing Verity. Dr Dhasmana sat
14 on the little shelf with his back to the corridor, and
15 I was perched on a stool beside her cot, and he
16 explained what was involved in the operation. He
17 explained that he was going to enter her rib cage from
18 one side and that he was going to insert a tube, and he
19 took out of his inside jacket pocket a yellow what
20 I believe to be Bic biro pen and he removed the central
21 portion which contains the ink and he was left with the
22 outside tube. He explained to us that that was similar
23 to the shunt that was going to be used. It was going to
24 be a hollow tube --
25 Q. Which was? The larger container, the outside of the Bic
0037
1 or the inner thin tube that carries the ink?
2 A. It was the larger outside container, the hollow tube
3 without the central core in it. He explained to us this
4 was what he was going to insert.
5 THE CHAIRMAN: Would it help, just for me, to make clear,
6 something like this (indicating)?
7 A. That is right, and he simply removed the ink you write
8 with, leaving the hollow outside as the yellow tube.
9 THE CHAIRMAN: I was referring to a pen which I found on my
10 desk.
11 A. So he showed us this and explained that this would be
12 similar to the type of thing that he was going to insert
13 into Verity, and he explained to us that the pulmonary
14 artery which she had was too small, and that he would
15 remove that, and that he would then insert this tube as
16 a replacement and that upon doing so, this would allow
17 the blood to flow through in sufficient quantity that
18 when Verity came out of the operation, we would see
19 a dramatic difference in her appearance. He told us
20 that when we saw her for the first time, she would be
21 bright pink, and he explained that, you know, the joy
22 that other parents had seen on seeing their child come
23 out of the operation and to be bright pink.
24 I accepted that for what it was explained to us,
25 and I understood that. He then asked my wife, or he
0038
1 asked for a signature on the consent form to the
2 operation.
3 MR LANGSTAFF: Just pause there. Could I please have
4 on my screen 2374/58, the bottom of the page, please.
5 This is a note which I believe to be in
6 Mr Dhasmana's handwriting. It is a clinical note:
7 "10th September, diagnosis, pulmonary atresia with
8 a small pulmonary artery, admitted twice before,
9 catheter in July 90, now blue, not sweaty, a bit
10 breathless or breathless plus, and grunting plus."
11 That is a description, she was blue, pretty
12 breathless and she tended to grunt?
13 A. Again, her blueness did not significantly appear to
14 change to us over the period of time.
15 Q. That is not the question. The question is whether she
16 probably appeared blue. Mr Dhasmana is making
17 a comparison about what you would see after the
18 operation to the way she was in the room?
19 A. Yes, prior to it.
20 Q. So plainly he was anticipating she would look pinker?
21 A. Correct.
22 Q. What I am therefore asking, if she was going to look
23 very pink, or pinker, and you would be pleased by that,
24 is it right to say she probably looked a bit blue or
25 bluish?
0039
1 A. I would not disagree with that.
2 Q. As for the breathlessness, is that a fair description of
3 the way she would have been when Mr Dhasmana saw her and
4 you on 10th September?
5 A. There were times when she did get breathless, yes.
6 Q. Whether it was for that reason or for some other reason,
7 did she tend to grunt a bit, make grunting noises?
8 A. It was something which I had not noticed and my wife had
9 not noticed. I think, if there was what he termed
10 a grunt, it was what we had grown to live with and took
11 as our first child to be normal. We did not either
12 realise or know that this sound that she made was
13 anything untoward.
14 Q. The sort of thing you would be used to, but other people
15 who did not know Verity might notice, in the way that
16 one does?
17 A. Correct.
18 Q. So you were going to go on to talk about the signing of
19 the consent form?
20 A. Yes. He had with him the form, the consent to the
21 operation, and obviously, in discussing the operation
22 and prior to the signature of the consent form, I wanted
23 to know what the risks associated with it were, which
24 I think is a question that any parent would ask, or any
25 person would ask, prior to the operation.
0040
1 Throughout our discussions with Mr Dhasmana that
2 evening, we were given the impression that this was
3 a very simple routine and uncomplicated operation.
4 On asking him, obviously, what the chances are,
5 what the risks were, and as I put it to him, I recall,
6 "What is the risk to Verity of this operation?" and he
7 said "The only risk to Verity is the risk of
8 anaesthetic, and that goes with any operation".
9 I took that to mean that other than the risk of
10 her undergoing anaesthetic, there were no other risks
11 associated with the procedure that he was about to carry
12 out.
13 That reassured me. I felt that this was as close
14 to perfect as one could get, accepting that if anyone is
15 going to undergo a surgical procedure, there is a need
16 for anaesthetic and if the risk for that is standard,
17 I was more than happy on that advice for either myself
18 or my wife to sign the consent form.
19 Q. In looking at the risks of the operation, did you have
20 in mind the down side if there was no operation?
21 A. I did.
22 Q. At that time, what did you understand that down side to
23 be?
24 A. That she would, as previously stated, remain in her
25 status quo situation until she approached her teenage
0041
1 years, when again there was a high chance she would
2 begin to gradually deteriorate as she reached towards
3 puberty.
4 Q. I am going to anticipate what happens a little in order
5 to ask you to comment on the next screen, which I am
6 going to ask to be put up. Can I please have 2374/84?
7 Can you scroll down, please? Can you flick back so
8 I can remind myself of the date: 28th November 1990.
9 Can you scroll down past the address?
10 This is a letter to you after Verity's death,
11 which you can tell us about in due course, from
12 Dr Jordan. The second paragraph, to run through the
13 points which you raise, it sets out the basic problems.
14 Let us go down to the very last paragraph on the screen
15 for a moment:
16 "As you know, we felt that although the prospects
17 looked generally poor, we should make the attempt as
18 I and all my colleagues felt that her outlook without
19 some attempt at operation was extremely poor and we
20 could be fairly certain that she would not have managed
21 to survive another 6 or 12 months without some sort of
22 intervention. Sadly at operation ..."
23 He goes on to describe what was found at the
24 operation.
25 That sentence suggests that he, Dr Jordan, knew
0042
1 that Verity's chances of survival without an operation
2 were very limited?
3 A. Correct.
4 Q. He uses the words "As you know, we felt that ..."
5 A. Correct.
6 Q. Had he told you that?
7 A. No, he had not.
8 Q. So her outlook without some attempt at operation, you
9 understood to be up until her teens?
10 A. Correct.
11 Q. And he, it appears, is recording here that he had taken
12 a different view which he had never expressed to you?
13 A. Correct.
14 Q. Thank you. We can go back to the account that you were
15 giving us of your discussions with Mr Dhasmana.
16 Can we remove that screen for a moment, please.
17 You say in your statement -- we need not go to the
18 actual statement itself -- that Mr Dhasmana repeatedly
19 reassured your wife and you on the point that the only
20 risk was that of an anaesthetic?
21 A. Correct.
22 Q. Why did you ask him more than once?
23 A. I was seeking reassurance. I was seeking reassurance
24 from the fact that here we were in a situation where you
25 are submitting your child for an operation which is
0043
1 going to be invasive to her. She was a very small child
2 in terms of comparison to an adult, and she was my
3 child, and I, as any parent, was extremely concerned
4 about any type of surgery on my child. I needed
5 reassurance. My wife needed reassurance, that anything
6 that was going to be done to our child which involved
7 invasive surgery to her, where you are talking about,
8 you know, cutting through her rib cage and entering her
9 body to perform a procedure on the exterior of her
10 heart, is a frightening thought, even to an adult, but
11 to the parent of a 9 month old child, we needed as much
12 reassurance as we could possibly get and basically, at
13 the end of the day we just wanted him to say it again,
14 and to just take comfort in the fact that the only risk
15 to her was anaesthetic.
16 Q. You appreciate that it may well be suggested -- we are
17 going to see later in this Inquiry -- that the risks may
18 not have been entirely as you have put them in your
19 statement?
20 A. Correct.
21 Q. And just exploring that for a moment, if you do not
22 mind, it might be suggested that here you were, you had
23 asked for the operation to take place; you had been
24 worried about it being delayed, had you not?
25 A. Yes, I had.
0044
1 Q. It is an operation which you knew the essentials of for
2 several months?
3 A. Yes.
4 Q. You had been looking for it to improve Verity's life?
5 A. Yes.
6 Q. You understood it was going to be a much more serious
7 operation than the catheterisation, they had already
8 told you that?
9 A. Correct, but neither -- we also knew that if it was
10 successful that a further operation would be needed in
11 the long-term future which is going to be far more
12 complicated than the one we were about to undertake.
13 Q. You had some medical experience and background?
14 A. Yes.
15 Q. And this was an operation which you wanted to be
16 conducted?
17 A. Yes.
18 Q. So far as the risks were concerned, there was the
19 consultant surgeon saying, "Well, the risks are simply
20 those of a general anaesthetic"?
21 A. Correct.
22 Q. And you have already told us you were reassured by that?
23 A. Yes, I was.
24 Q. Why did you need to have it repeated?
25 A. Again, as I have stated, simply because, you know, here
0045
1 we are, about to sign the consent form. I wanted to
2 hear it from him and my wife wanted to hear it from him
3 just one more time, that what we were doing was the
4 best. And again, as I said, we had that initial choice
5 of whether we leave her as she is, or we undergo this
6 operation, and believing it was the best, because it was
7 a conscious pushing on our part for this operation to
8 take place, after a 9 months period, I suppose in order
9 to make sure, I reassured myself that the decision I was
10 making was the correct one, I needed to know that I was
11 not putting her at any undue risk.
12 Q. You looked through your own medical or your daughter's
13 medical records?
14 A. Yes.
15 Q. There is no reference, I think, to you and your wife
16 being particularly anxious at this time, any more than
17 parents would normally be?
18 A. No.
19 Q. In any event, following that consultation, that was on
20 10th September, the operation was scheduled for the
21 12th, was it?
22 A. Yes, it was.
23 Q. And your main concern was to keep Verity happy between
24 the 10th and the 12th, whilst she was in the hospital?
25 A. That is correct.
0046
1 Q. And you spoke with the anaesthetist on the 11th
2 September?
3 A. Yes, we did. The anaesthetist, Dr O'Higgins, came in
4 and obviously explained his role in the operation, of
5 what he was going to do, and he was extremely polite,
6 reassuring, confidence-inspiring, and he promised us
7 that he would take good care of Verity whilst she was
8 being operated on and that gave us a great deal of
9 reassurance.
10 Q. Did he say anything himself about risks?
11 A. No, he did not.
12 Q. Verity was scheduled to go down to the operation at
13 8.30 in the morning on 12th September?
14 A. Yes.
15 Q. You went down to the theatre room with her?
16 A. Yes, Mr Chairman. Obviously, we had spent the previous
17 day with Verity, out on the lawn, outside the ward. It
18 was a sunny summer's afternoon and we were playing with
19 her, having a picnic and she was very happy. We were in
20 a state of flux, where the decision had been made, the
21 pre-operative examinations had been done, and the
22 operation was due to take place the next day, so we had
23 this period where we just enjoyed Verity.
24 The following morning, obviously, prior to the
25 operation, we were up early; we were in to see Verity.
0047
1 Again, two of us were sleeping in a single bed in
2 a cramped single room, but we came in and obviously
3 spent some time with Verity early in the morning, before
4 the preparations were necessary. So she was prepared
5 and dressed and given the pre-medication, and we then
6 waited for the due time. We went with Verity from her
7 cubicle to the doors, not in the operating theatre
8 itself because we were not allowed that far, but to the
9 first set of double doors, where we were met by the
10 theatre staff, dressed in gowns and masks --
11 Q. Can I just stop you there? That is where you said
12 goodbye to her?
13 A. Yes, it was.
14 Q. And kissed her goodbye and off she went. She was still
15 conscious, was she?
16 A. She was semi-conscious.
17 Q. You do not make any complaint about that in your
18 statement?
19 A. No, I do not.
20 Q. I do not know if you were here yesterday when Mick
21 Parsons gave his evidence. He was upset by taking his
22 daughter down to theatre when she was still
23 semi-conscious, and saying goodbye to her there. What
24 do you say about that process? Was that something which
25 helped you, or ...
0048
1 A. I have no complaints at all with that process. Verity
2 was a very placid child, a very happy child, and as long
3 as her Mum was with her, she was happy. We went with
4 her, and we were happy to do so. We wanted to do so.
5 I have no complaint at all about that procedure on that
6 day.
7 Q. So the difference, perhaps, if I may comment, between
8 you and Mick Parsons, is that you wanted to take Verity
9 down, and he did not want to take Mia down. He has to
10 speak for himself, obviously, but so far as you were
11 concerned, it was both your wishes?
12 A. Yes. Both my wife and I wanted to take Verity to the
13 furthest point in the theatre we possibly could. If we
14 could have been with her in the theatre, we would have
15 been.
16 Q. And you felt you had a choice?
17 A. Yes, I did.
18 Q. Then you had to go off and kill time while the operation
19 took place?
20 A. That is correct.
21 Q. And how did you do that, briefly?
22 A. Once we kissed Verity goodbye, we were told by the
23 nursing staff that we should go down town, go and get
24 a cup of tea, that she was in good hands and to come
25 back at around 11 o'clock in the morning. That is what
0049
1 we did.
2 Q. Then you came back and just after midday, I think, you
3 were told by a nurse, who knocked on the door and told
4 you that Verity was now in the recovery room?
5 A. That is correct. We came back at 11 o'clock and were
6 told Verity was not out of the operation, but she should
7 be due out shortly. We decided the best place to go
8 would be back to our room, where we could be easily
9 contacted by the medical staff. True, about 12 o'clock
10 we had a knock on the door from the nurse to say Verity
11 was out of the theatre and was now in the recovery
12 room. That is where we went.
13 Q. You went to see her, obviously?
14 A. Yes, we did.
15 Q. What about her colour?
16 A. We walked into the recovery room and obviously
17 identified Verity. My wife was obviously upset and
18 concerned with the number of drips and drains and the
19 like, which she had had no previous experience of
20 seeing. To me, that was expected. I expected nothing
21 different. What I did not expect to see was my daughter
22 looking 10 times worse in colour when she came out of
23 the operation than when she went in. She was an ashen
24 grey in colour, a look which I have only seen previously
25 on people that are in the process of death. She had
0050
1 a look about her which I immediately knew from seeing
2 people in many situations who have died in my arms, she
3 had the look about her, and I knew that something had
4 gone drastically wrong. But I could not tell my wife.
5 I had to give her hope and support her, but the fact
6 that we had been given this encouragement and this
7 reassurance and this total confidence that when we saw
8 her for the first time she would be bright pink, and
9 significantly better than when she went in the theatre,
10 to see her now, visibly 10 times worse, was
11 gut-wrenching.
12 Q. She was with some care staff?
13 A. Yes, she was.
14 Q. So because of what you saw, and understood in relation
15 to her colour, you spoke to them, did you, about her
16 colour and why it was as it was?
17 A. I did not want to do that in front of my wife. I had to
18 keep her confidence up; I had to reassure her. I had to
19 lie to her that everything was okay. Yet, inside,
20 I knew that it was not.
21 At an opportunity to speak to a nurse on her own,
22 I remember asking "What has gone wrong?" and the reply
23 I got was, "You will have to speak to the surgeon".
24 That is all I got. It was shortly after that that
25 Mr Dhasmana then came into the recovery room.
0051
1 Q. So you did speak to the surgeon?
2 A. Yes, I did. As he entered the room, I looked at him and
3 he came in with his head bowed and he would not look at
4 me, straight in the eye. That gave me cause for
5 concern. His first words to me were "I am sorry", and
6 he went on to say, "When I opened her up, things were
7 not as I expected". My first reaction was, "Why? You
8 have done all of these tests, you have done all of these
9 catheters, you have done all of these examinations,
10 surely you knew, when you went into her, what you were
11 dealing with".
12 Q. Can I just stop you there? I appreciate it is not
13 easy. I want to see if you can get the words exactly
14 right. He says, "Sorry", and then is it a quote or is
15 it the effect of what he was saying, that things were
16 not as he expected?
17 A. No, this is a quote. The words will stay with me for
18 ever. His words were: "I am sorry. When I opened her
19 up, things weren't as I expected."
20 Q. You in your mind plainly were running through "Why not?"
21 and you have told us that was in your mind. Did you say
22 those things to him at that stage?
23 A. I did ask him what he meant, "What do you mean?" He
24 explained it very briefly in the fact that the arteries
25 which he intended to join on to were not as large as he
0052
1 thought they were going to be and that this had proved
2 problematical for him, but he had succeeded in doing
3 a shunt and we must now wait and see.
4 Q. So the planned operation was not quite done because of
5 surprise, as he put it, to him, when he conducted the
6 examination, the operation on the operating table?
7 A. That is correct.
8 Q. How long did he spend with you?
9 A. About 7 minutes, certainly no more than 10.
10 Q. Is it right, will you just confirm, that in your mind at
11 any rate at this stage, you will say "Why, when
12 everything has been told to us to give us encouragement,
13 give us confidence, all these tests have been done, how
14 on earth could something have gone wrong?"
15 A. It is. What I could not comprehend at that moment in
16 time, up until that point everything had been conveyed
17 to us as being entirely routine, very simplistic and
18 very safe, and it was conveyed to us in a way that we
19 had never even considered in reality that what I was now
20 looking at was even a possibility. I wanted to know why
21 there was this disparity between what he said we were
22 going to see and what he was going to do and what we
23 were actually confronted with. It seemed to be two
24 complete ends of the spectrum. On the one hand we were
25 submitting her for a very simple closed heart procedure
0053
1 which was going to dramatically enhance the quality of
2 her life, and yet I am receiving a child back that on
3 the face of it is 10 times worse, and I could not
4 comprehend why, if they had done all of these
5 exploratory operations, the catheters, the
6 echocardiograms, which were to determine the size of
7 these vessels, why he is saying to me that when he went
8 into her, he is confronted by something unexpected.
9 That, I could not comprehend.
10 Q. You did not see any cardiologist that day?
11 A. No.
12 Q. You stayed with Verity?
13 A. Yes, we did.
14 Q. And she was on the ventilator and sedated?
15 A. Yes. She was returned from the recovery room to the ITU
16 on Ward 37. She was on ventilation and full sedation,
17 and she remained on ventilation throughout the rest of
18 her life, which lasted four days, other than when she
19 underwent physiotherapy.
20 Q. You were with her all the time?
21 A. We spent most of the time with her. My wife spent the
22 majority of the time with her at her bedside. If she
23 was not with her, I was, and we, apart from a few hours
24 in the night, when we tried to gain some sleep, either
25 individually, through periods of sharing the
0054
1 responsibility, and sometimes we had a few hours in the
2 room to ourselves.
3 Q. If there should be a reference in the medical notes to
4 her coming off the ventilator for some 48 hours, that
5 would be wrong, would it?
6 A. To my recollection, Mr Chairman, I do not recall Verity
7 coming off the ventilator. However, there was a period
8 in time when I went home for practical reasons, and if
9 she came off the ventilator during that course of time,
10 I would not be aware of it.
11 Q. You have a complaint about the physiotherapy which she
12 underwent?
13 A. Yes, I did.
14 Q. Tell us about that.
15 A. We were led to believe in the first day that Verity was
16 suffering a build-up of fluid on the lungs, and in order
17 to dissipate that, that she required quite vigorous
18 physiotherapy. As I stated previously, we knew that
19 when Verity exerted herself and became stressed, that
20 this exacerbated her problem. So when we see her coming
21 off the ventilator and being very vigorously exercised
22 by the physiotherapist, which certainly to my wife's
23 view, and mine, was causing further distress to Verity,
24 and I say that because once the physiotherapy was
25 completed, she was struggling to hold, you know, any
0055
1 stability, and she was obviously visibly worse after the
2 physiotherapy than she was before it. She required hand
3 bagging, and sometimes for a considerable period of
4 time, during the physiotherapy. My wife's intuitive
5 feeling was, "This is not good for her; this is not
6 doing her any good; this is making her worse, this is
7 exacerbating the problem". When you see your child
8 being exercised as vigorously as she was, and it is
9 supposed to be doing her good, but you can only see it
10 making her worse, you are naturally concerned. We
11 expressed our feelings to the physiotherapist. Her
12 reaction was very abrupt: "I have to do this; it will
13 make her better. It is for her own good."
14 Q. Were you spoken to by anyone in charge of the intensive
15 care ward, as to the reason for the physiotherapy, why
16 it was thought necessary?
17 A. Purely to dissipate the build-up of fluid on her lungs.
18 Q. So someone senior did speak to you?
19 A. There were a number of doctors which came and went.
20 No-one particularly sticks in our mind. There was
21 no-one who seemed to be in overall charge of her. As
22 the shifts came, different doctors came and went. It
23 was one of those when questioned by myself and my wife
24 why this was necessary, that it was reiterated that it
25 was to reduce the build-up of fluid on her lungs.
0056
1 Q. You went home on 15th September because you had other
2 matters to attend to. You were contacted early the next
3 day, the 16th, and asked to go into Bristol?
4 A. That is correct, Mr Chairman. I had gone home for
5 practical reasons. There were a number of things that
6 needed to be attended to and because of the distance
7 I had stayed overnight. My wife remained at the
8 hospital with Verity, and I was awoken in the early
9 hours of the morning by a colleague, a local police
10 officer, who insisted that I return to Bristol as soon
11 as possible. It transpired that my wife was obviously
12 concerned and wanted me there, and that the only means
13 of contacting me was to send a local officer, so she
14 rang my police station and got somebody sent out to get
15 me. On hearing that, I immediately returned to the
16 hospital as quickly as I could. I phoned her parents
17 and told them, and obviously, we went independently, but
18 her parents and I returned to the hospital, where
19 I arrived at about 11 o'clock in the morning.
20 Q. I think things got much worse during the day, did they?
21 A. When I met my wife, she was extremely distraught. She
22 was extremely angry with me, because it transpired at
23 about 1 o'clock in the morning, Verity had taken
24 a substantial turn for the worse, and because my wife
25 was there on her own and I was away, she felt very let
0057
1 down.
2 It transpired, as I say, that at that point in
3 time, this turn for the worse was not improving and the
4 day progressed and obviously our concern increased as
5 the day went on, to the point where, at round about 6 to
6 6.15 on the Sunday evening, we were with Verity in the
7 ITU. There were some other children in beds close by
8 and a couple of nurses attending to them, and Verity
9 collapsed. The alarms started to sound. My wife began
10 to panic, and the nurses came running. There was no
11 doctor on hand, and one nurse left to bleep the doctor
12 on call. Obviously, Verity was in the process of
13 dying. That was obvious to me.
14 At this point, when the doctor arrived, they
15 wanted both my wife and I to leave her bedside and to go
16 to the anteroom which was just off the intensive therapy
17 unit. There was a small room and there was a sofa in
18 it. My wife went to the room, and was there with her
19 parents and another friend. They wished me to leave
20 Verity's bedside, but I refused to do so. I was not
21 leaving my daughter at this critical time. I was more
22 than well aware of the procedures that would be
23 necessary. They were not happy at my remaining there,
24 and did their utmost to get me out. But I was not going
25 to leave my daughter.
0058
1 I sat on a stool, about the distance I am from
2 you, Mr Chairman, as they worked on her. I watched them
3 give her adrenalin in increasing amounts. I looked at
4 them and saw the concern on their faces. I watched them
5 resuscitate her and defibrillate her, and after 15
6 minutes, I asked, or I said, "I think the time has come
7 to let her go", at which point they ceased and Verity
8 died.
9 I left the stool and I went into the anteroom.
10 I did not really need to tell my wife what I had to tell
11 her, and all I said was, "Verity has gone", at which
12 point she broke down and her parents broke down and her
13 friend broke down.
14 I left the room and went back to where Verity
15 was. She lay on the bed and the nurses were removing
16 the drips and the drains from her. I watched them do it
17 and I then picked Verity up. She was wrapped in
18 a blanket by the nursing staff, and I carried her to my
19 wife. I took her in the room and I gave her to Jane.
20 She nursed her and held her and for some 10/15 minutes,
21 we had her to ourselves and our family. Whereupon
22 I felt it was not prudent for her to remain with Verity
23 any longer for her own sake, and I prised Verity from
24 her and took her back to the ITU ward.
25 We were asked to obtain some clothes for Verity to
0059
1 dress her. We were asked to clear our rooms as they
2 were needed by another family, so we went to the room
3 and got the clothes, and we came back and we dressed
4 Verity. She had been cleaned by the nursing staff and
5 we dressed her in one of her own clothes, and it was
6 shortly after that that she was taken from the IT ward
7 to the Chapel of Rest. We wanted to go and see her, so
8 we were led by a hospital porter down an endless series
9 of corridors, which were narrow, dimly lit, and seemed
10 to go on for ever, down and down. It felt almost
11 subterranean. We were led into a Chapel of Rest which
12 was small, I believe the walls were mustard coloured.
13 It was cold and dimly lit. Our daughter was left in
14 this cold and unwelcoming room, and we were left for
15 10 minutes to say basically our goodbyes to her. We
16 left the room and we returned, again, led by the porter,
17 back to the hospital.
18 By that time our room was cleared and we were
19 being asked to leave the hospital. This was no more
20 than an hour after Verity had passed away. At some
21 point in that period of time, I came across the doctor
22 who had administered to her when she died. At this
23 point, as I say, things were very emotional and all
24 I can remember is at that point, then, leaving the
25 hospital, leaving our daughter there, getting into a car
0060
1 with a child's seat in the back, which only 6 days
2 previously our daughter had sat in whilst we had taken
3 her to hospital and here we were driving home, knowing
4 she was not going to sit in that seat again. That was
5 the longest and most painful journey we have ever
6 undertaken.
7 Q. The wrench of your leaving her in the hospital and going
8 home: would you have welcomed more time to stay at the
9 hospital with her?
10 A. Yes, we would. We felt at the time that we were given
11 insufficient opportunity to come to terms with the loss
12 of our child. You need time to just be at one with that
13 person and be at one with your own emotions, and that
14 time was denied to us. I felt as though we were on
15 a conveyor belt; that once Verity had died, we were no
16 longer of any value; that they wanted us out of the
17 hospital; they wanted to have no contact with us. We
18 were told that another family was waiting for the room.
19 Even to have been allowed to go back to that room and
20 spend some time on your own, coming to terms with it,
21 would have made a tremendous amount of difference. That
22 was denied to us.
23 Q. Did anyone from the counselling service or a counsellor
24 talk to you at all?
25 A. Not at that time.
0061
1 Q. Apart from the doctor that you mentioned, and the
2 hospital porter who took you down to the Chapel of Rest,
3 was there any person of the hospital staff who spoke to
4 you to deal with or help you in your grief?
5 A. I recall the presence of what I believe to be the
6 cardiac liaison nurse, who made some very what I felt
7 were inappropriate comments, such as, "I know how you
8 feel". No-one can know how we felt at that time, unless
9 they have lost a child of their own, and I am afraid
10 I was probably very intolerant of that person, and
11 I wanted her nowhere near me or my wife, so our contact
12 was extremely brief.
13 Q. So she offered, and you did not -- you could not take
14 it, you did not want it?
15 A. No.
16 Q. Looking back on it -- I appreciate it is very difficult
17 to look back on something like that in retrospect, but
18 in retrospect, apart from giving you more time on your
19 own to come to terms with what had happened, is there
20 any way in which an experience like that could have been
21 made easier or better for you?
22 A. From our point of view, the time between the moment your
23 child dies and that you leave the hospital is probably
24 the most critical of all. At that point, you are trying
25 to come to terms with the loss of your child; you are
0062
1 confused, emotional and extremely stressed. But you can
2 be extremely rational through it all as well. What you
3 want is answers; answers to questions: why did my child
4 die? Why am I in this situation? Why me? If somebody
5 could have spent just a little bit of time explaining or
6 even just being available to sit with us and to answer
7 any of the questions we had at that time, it would have
8 been appreciated.
9 The only thing that was ever said to us was by the
10 doctor who had administered her on our leaving, when he
11 said, "You have to appreciate that one in a thousand
12 children die anyway. It is just unfortunate that you
13 are that one."
14 Q. He put it that way, did he, "You have to appreciate
15 that ..."
16 A. Yes, "You have to understand and appreciate that one in
17 a thousand children will die anyway; it is just
18 unfortunate that you are that one".
19 Q. You were not, I take it, helped by that comment at all?
20 A. No, I was not.
21 Q. However crass it may have been in its expression, do you
22 think he was intending to be helpful?
23 A. I have no doubt that his intentions and his words were
24 well-meaning. I have no criticism of him for that.
25 Q. You went home and tried to come to terms with what had
0063
1 happened?
2 A. Correct.
3 Q. I want to take you on to what happened after that. You
4 had a letter, I think -- let us look at it on the
5 screen, 2374/92 --
6 THE CHAIRMAN: You may wish to take it down a bit in terms
7 of address.
8 MR LANGSTAFF: I have discussed that with Mr Curnow, and it
9 is not necessary. This is from Mr Dhasmana to you?
10 A. Correct.
11 Q. It is dated 17th September?
12 A. The day after Verity died.
13 Q. It speaks for itself, perhaps:
14 "Please accept my heartfelt condolences on your
15 sad loss. I feel very sad and disappointed in having
16 failed to improve Verity's oxygenation. Please do not
17 hesitate to contact me if I can be of any further
18 assistance."
19 You read something into the word "failed"?
20 A. Yes. This was written the day after my daughter died
21 and was received by us the following day. I am still
22 trying to come to terms with why such a simple operation
23 as it was explained to us could have gone so tragically
24 wrong, so on receiving it, the phrase "I feel very sad"
25 is understandable. Once we move on to "disappointed"
0064
1 and "having failed to improve Verity's condition", that
2 implied to me some degree of failure on either his part
3 or the hospital's part, and again confirmed my opinion
4 that her death should not have happened.
5 Q. So you read "failure" as being an acceptance of blame,
6 rather than a statement of outcome?
7 A. That was my impression. Yes, it was.
8 Q. Your wife, I think, wrote back to Mr Dhasmana?
9 A. Correct.
10 Q. May we have a look at that letter, 2374/87:
11 "Thank you for your letter of 17th September
12 1990. As you can imagine, it is a difficult time for us
13 all at the moment since the sad loss of our daughter
14 Verity, but it would help me tremendously if you would
15 be kind enough to answer the following questions for
16 me... "
17 He had offered in his letter to be as helpful as
18 he could be?
19 A. As I said, we wanted an explanation of what went wrong,
20 and this was our first opportunity to ask the hospital
21 those questions.
22 Q. "To outline in detail the full extent of Verity's
23 condition."
24 Did you have the sense that you had not had the
25 full extent explained to you?
0065
1 A. Very much, Mr Chairman. As I said previously, this was
2 given to us as such a simple and routine procedure, yet
3 it had resulted in the loss of our much loved and
4 cherished daughter. By virtue of the letter from
5 Mr Dhasmana he felt sad, disappointed and used the word
6 "failed", it conveyed to me, perhaps cynical through my
7 profession, there was something sinister underpinning
8 this which I wanted to know about. My wife and I left
9 the hospital knowing intuitively something was not
10 right. We could not put our finger on it, we do not
11 know, but we left believing, intuitively as parents,
12 that something was not right and this is what we wanted
13 to know.
14 Q. Your point 2:
15 "If anything would have been gained by delaying
16 the operation (we realise she was deteriorating)".
17 Did you realise that she was deteriorating?
18 A. Certainly in the light of our experience at the hospital
19 over those few days, when she was there prior to, during
20 and post operatively, it was made a little bit clearer
21 to us in the light of our experience that she was in the
22 process of deterioration. How rapid that was, we did
23 not know, but obviously, hindsight is a very powerful
24 and beneficial thing. That is what we wrote that with,
25 with the benefit of hindsight.
0066
1 Q. You appreciate you were saying earlier to us you thought
2 she was going to go on in status quo for quite a long
3 time?
4 A. Yes.
5 Q. But you had come at any rate to appreciate before the
6 operation, in part, that she was deteriorating?
7 A. Yes.
8 Q. Then (3) in your opinion, why the operation failed.
9 There is nothing, I think, in the letter reminding
10 Mr Dhasmana of the comment you recall that things were
11 not as he expected them to be?
12 A. No, there is not. Mainly because I did not write the
13 letter, and the comment was primarily directed by
14 Mr Dhasmana at me.
15 Q. Was your wife there to hear it?
16 A. She was there to hear it, but as I say, at that point,
17 I do not think she really heard it.
18 Q. Had you discussed that comment with her afterwards?
19 A. Not immediately afterwards, because we had a problem
20 communicating, you know, for some period of time
21 afterwards.
22 Q. "The actual cause of death (we appreciate a post-mortem
23 was not carried out at our request) in your opinion..."
24 You go on about other abnormalities, and then
25 (6) looking to the future.
0067
1 Can we turn over to the next page, 89, the last
2 page of your wife's letter:
3 "Can I take this opportunity of thanking you for
4 all your efforts in respect of Verity and I hope in some
5 way you have gained further knowledge through Verity's
6 condition.
7 "My husband and I will be in touch in the near
8 future, in respect of a donation for the ITU unit
9 (hopefully for a ventilator)."
10 A. Yes.
11 Q. So you wanted explanations, plainly?
12 A. Yes.
13 Q. You accepted at this stage that everything had been done
14 with the best of intentions and with the worst of
15 results?
16 A. Correct.
17 Q. You were thanking Mr Dhasmana for what he had tried to
18 do?
19 A. Correct.
20 Q. So whatever it was that he had said to you, you at least
21 had the impression that he tried his best?
22 A. Yes, I did.
23 Q. And the donation to the ITU unit, you wanted to
24 contribute positively to the Bristol hospital?
25 A. We wanted to do something positively to remember our
0068
1 daughter. We wanted to be positive and constructive and
2 that at the time, which was written only about three or
3 four days after she died, seemed the most appropriate
4 thing to do.
5 Q. You have told us about the way in which Mr Dhasmana had
6 expressed the risks of the operation to you, it would be
7 no more than a general anaesthetic, and the way he had
8 come to you afterwards and said "Things were not quite
9 as I expected". In thanking him for his efforts, at
10 this stage at any rate you were not blaming him for
11 having misled you as to the chances?
12 A. No. At that stage we had no knowledge. We were under
13 the impression that Mr Dhasmana had operated on Verity
14 on certain information that he had, and that when he was
15 confronted with the internal anatomy, that that had
16 varied from what he had been given, and we believe that
17 he had tried to do the best with what he had found and
18 that somehow, for whatever reason, this had not worked,
19 and had resulted in Verity's death.
20 I think all of us are conditioned to putting
21 doctors on a pedestal, surgeons upon an even higher
22 pedestal, but when you reach the rank of heart and brain
23 surgery, to the normal person they are nothing but gods
24 and we put our trust and faith in the hands of the
25 surgeon, we put our daughter's life in his hands. We
0069
1 believe at that point in time he had done his best, and
2 we thought it right out of courtesy to thank him for the
3 efforts he had made, even though they had, in inverted
4 commas, "failed". I think anyone who submits himself
5 for an operation, or whether it fails, inevitably thanks
6 the doctors for their efforts.
7 Q. I understand. You thank him for his efforts, and your
8 blame of Mr Dhasmana comes in retrospect and what you
9 have learned since?
10 A. It does.
11 Q. And really what you have learned from the GMC hearings.
12 If what he has said was right when he opened her up,
13 things had not been as they expected, and if one of the
14 things going through your mind was the fact she had two
15 catheterisations to see what the anatomy was, did you
16 blame the cardiologists at all?
17 A. My feelings at that time, so far as blame was concerned,
18 I would not use the word "blame" at that point. At that
19 point, my questions were more directed towards the
20 cardiologists, as to why the information that the
21 surgeon had been presented with was at such discrepancy
22 with what he actually found and because I had not had
23 a chance to speak to the cardiologist following Verity's
24 death, I had no explanation for that.
25 So, it is true to say that if I were looking to
0070
1 blame anyone at that time, they were veering towards the
2 cardiologist.
3 Q. Indeed, the word "failed" that Mr Dhasmana used in his
4 letter to you, which you see as indicating a degree of
5 blameworthiness rather than outcome, is that something
6 which in reality you have come to look at in that light
7 since the GMC, rather than at that time?
8 A. No. That impression of blame or failure on
9 Mr Dhasmana's part was evident from the moment I read
10 the letter for the first time. As I said, we left the
11 hospital feeling this intuitive thing that something had
12 gone wrong; we did not know what, we did not know by
13 whom, and when you receive a letter, as I say, just two
14 days after the death of your child, where the surgeon
15 who operated says, "I am sad, I am disappointed and that
16 I failed to improve her oxygenation", I think any
17 ordinary person would accept the word "failure" as
18 having an element of blame attached to it.
19 Q. You said you did not speak to the cardiologist, but you
20 got a letter, I think, following your wife's letter to
21 Mr Dhasmana. You got a letter from Dr Jordan. We have
22 already looked at it in part.
23 A. Yes.
24 Q. Can we look again at 2374/84? It is a letter of
25 28th November. I think we can go down to the text, the
0071
1 first line we read:
2 "Can I first of all say that we were all of course
3 very sorry that Verity died after her operation and we
4 do all realise what this must mean to you.
5 "To run through the points which you raise, the
6 basic problem with her heart was that the blood vessels
7 which should have carried the blood to the lungs had not
8 developed during the period in which her heart and lungs
9 were developing before birth. There was a very tiny
10 blood vessel representing the normal artery going to
11 both lungs but this received its blood not directly from
12 the heart, but from other blood vessels which arose from
13 the aorta which is the main artery carrying blood to the
14 body. There was also a hole between the two ventricles
15 but this can be regarded in the sense as a compensatory
16 mechanism to allow the blood that would normally have
17 been pumped into the lungs to get out of the heart
18 although of course it went into the wrong main artery,
19 that is the aorta."
20 THE CHAIRMAN: Mr Langstaff, I suspect the person taking the
21 stenography may have had some difficulty capturing what
22 you just said.
23 MR LANGSTAFF: I am grateful for being reminded of that --
24 I suspect not as grateful as the shorthand writer will
25 be!
0072
1 The letter goes on, and we can read it to deal
2 with Dr Jordan's report, that "there are 10 or 12 babies
3 born each year with Verity's condition .... present us
4 with very considerable problems in treatment". The last
5 sentence of that:
6 "Sometimes it is possible to make these arteries
7 grow, and for us to eventually correct the condition
8 with a further operation or series of operations, but
9 this is only successful in about half of the children we
10 see with this condition at best."
11 What do you say about the risks as they are there
12 expressed, 50:50 chance of survival beyond the early
13 stage, compared to what you were told?
14 A. Mr Chairman, on receipt of this letter, I suppose two
15 things became apparent: the first was that I was now,
16 for the first time since Verity's birth, beginning to
17 understand that her condition was significantly
18 different to what it was portrayed to me prior to her
19 death. The risks as they are portrayed in this letter
20 bore no resemblance to anything I was told previously,
21 and it transpired that other things in the letter were
22 never conveyed to us previously.
23 My overriding impression of this letter was that
24 it was what I can only quote as "damage limitation". It
25 felt to us that here was an explanation being given to
0073
1 us following her death, making out her condition was
2 substantially worse than what it really was, as we had
3 been led to believe. All I can say to you, Mr Chairman,
4 is that we were told that the shunt operation itself was
5 simple and routine, that it would dramatically improve
6 her quality of life and allow her to undergo a further
7 operation in the near future. We were told that in that
8 operation the only risk to Verity was the risk of
9 anaesthetic. The first time that we knew of anything of
10 this was in receipt of that letter.
11 Q. In the next paragraph, can we scroll down, please:
12 "As you know" -- we have looked at this
13 paragraph already -- can we go to the second sentence:
14 "Sadly at operation the arteries in the lungs
15 proved to be even smaller than they had appeared on the
16 special angiograms which we had carried out."
17 So there something is said about the size of the
18 vessels and the failure of the angiogram to display the
19 vessels as they were. If you look at the very last
20 paragraph:
21 "The findings at her operation were those
22 predicted by the catheter tests and nothing additional
23 was found. Because we were really quite sure of the
24 underlying heart problem, we did not think there was any
25 necessity to carry out a post-mortem examination."
0074
1 A. That is in fact incorrect.
2 Q. Because you say in your letter you asked for there to be
3 no post-mortem?
4 A. Mr Chairman, as a police officer, as you are well aware,
5 I have attended, as many police officers do, a whole
6 series of post-mortems, and I am more than well aware of
7 what is entailed in them. I did not want to think that
8 my daughter would have to undergo that procedure, and as
9 a result of that, I made it absolutely and abundantly
10 clear to the staff at the hospital upon her death that
11 there was no post-mortem to be carried out, and I made
12 that clear and abundant, and the reasons were given why
13 I did not want it carried out. It is for that reason
14 that I believe that the post-mortem was not carried out.
15 Q. Mr Curnow, you were looking for explanations, as you
16 have told us. You had been told by Mr Dhasmana that
17 things were not as he expected them to be at operation?
18 A. That is correct.
19 Q. Here is Dr Jordan saying in his last paragraph:
20 "The findings ... were those predicted by the
21 catheter tests ..."
22 In other words, they were as one expected them to
23 be?
24 A. That is correct.
25 Q. Did you at that stage appreciate the contradiction
0075
1 between what you had been told by Mr Dhasmana on the one
2 hand and Dr Jordan on the other?
3 A. Yes, Mr Chairman. This again seemed to reinforce our
4 initial suspicions. We had Mr Dhasmana telling us when
5 he entered Verity's anatomy that it was not as he
6 expected, and we are believing that the catheter tests
7 were there to provide that information.
8 If you look at the previous paragraph, it actually
9 says there that looking at the operation and the
10 angiograms, that almost one paragraph seems to
11 contradict the other. There seems to be no correlation
12 to this. It seemed to raise more questions than it
13 answered. We were not happy about the whole context of
14 this, and it seemed again, only to purely reinforce that
15 this was a cover-up. It seemed to be that one part of
16 the hospital, i.e. the surgeon, is saying one thing, and
17 the cardiologist is saying something else.
18 Q. You felt that at the time, did you?
19 A. On reading this letter, yes.
20 Q. You felt that there was a cover-up at the time?
21 A. I felt -- we both felt this was so dramatically
22 different, the information we had been given prior to
23 her operation and prior to her death, that here was
24 again something which seemed to suggest that this has
25 been given to us to pacify us. But in fact, instead of
0076
1 answering our questions, it was raising more. I wanted
2 to go on asking questions, but my wife would not allow
3 me. She wanted to put the matter behind her.
4 Q. Can we go on to the next page, please, 2374/85, the last
5 page of this very long letter. Can we go down to the
6 second from last paragraph:
7 "We are all very grateful to you for your offer to
8 raise money for equipment for the ITU here. I would
9 like to consult with my colleagues, particularly the
10 anaesthetists, about how this should be spent. It would
11 be helpful if you could give me some sort of indication
12 of the sum that you would hope to be able to raise."
13 Did you respond further to that?
14 A. There was a subsequent communication with the hospital
15 on that subject and that subject alone, yes.
16 Q. So you never raised the contradictions?
17 A. No, we did not.
18 Q. Despite having further communications at the time with
19 the hospital?
20 A. As I say, Mr Chairman, my wife was in a very distraught
21 state. Whilst she wanted to know what went wrong, she
22 did not want to know. I wanted to know the answers and
23 I wanted to pursue the questions. But I was faced with
24 a dilemma where, if I pursued them, it would be for my
25 own benefit, and I had to consider the benefit of her as
0077
1 well and in the light of that, I did not pursue the
2 questions any more at that time.
3 Q. There followed I think a period of some years when you
4 just let things lie, and then, in 1997, you began to be
5 interested in what Verity's records might show?
6 A. Correct.
7 Q. What made you interested?
8 A. Mr Chairman, at that point in time I had been certified
9 sick with what was being diagnosed at that point in time
10 as chronic fatigue syndrome, which meant I had a lot of
11 time on my hands at home alone. It allowed me to think
12 and my thoughts drifted towards Verity more and more
13 often, and these niggling doubts came more and more to
14 the forefront and as they did so, the number of
15 questions I wanted to ask began to increase, so I felt
16 for me the time was right to begin to ask those
17 questions, and hence I rang the hospital at Bristol and
18 asked to see her medical records. I felt that this was
19 the first step in at least answering my questions about
20 why Verity died.
21 Q. To cut a long story short, if you do not mind, you made
22 a number of attempts to get the records and I think felt
23 you were being fobbed off?
24 A. That is correct. I had made a number of requests of the
25 hospital to send me a medical records application form.
0078
1 I was told it would be sent and after weeks of it not
2 arriving and contacting the hospital, I was told it must
3 have been lost in the post, so a whole series of events
4 took place over a number of weeks, where I was left in
5 a position where I still had not obtained the original
6 form.
7 So becoming slightly angry at this, I rang the
8 hospital and was transferred from the medical records
9 department to Dr Joffe's secretary. Her name I cannot
10 tell you.
11 I again expressed my discontent to her, at which
12 point she said, "You had better speak to Dr Joffe."
13 Q. Pausing there for a moment, can you put a time roughly,
14 a date, on this conversation?
15 A. I believe this conversation was somewhere around the
16 April/May time of 1997.
17 Q. You were telling us that the secretary dealt with you
18 and what happened?
19 A. As I said, because I was not satisfied with the response
20 that the secretary was giving me, she said "You had
21 better speak to Dr Joffe". Dr Joffe, I have never
22 spoken to previously; I have never had dealings with
23 Dr Joffe. He came on the line and his words were
24 "Mr Curnow, I believe you require your daughter's
25 records".
0079
1 Q. Those are his actual words?
2 A. Yes. I said "Yes, I do. I have been trying to get them
3 for some considerable time". He said "Why do you want
4 them?" I said "I want to know happened about my
5 daughter". His response was, "I can assure you that
6 Mr Dhasmana is in no way involved in the Inquiry".
7 Q. Pause there. Had you mentioned Mr Dhasmana to him?
8 A. No, I had not.
9 Q. Had you mentioned "Inquiry" to him?
10 A. No, I had not.
11 Q. What did you mention about any Inquiry?
12 A. Nothing at all, Mr Chairman. So when he said about
13 "Inquiry", my immediate response was: "What Inquiry?"
14 He stuttered and said, "Oh, oh, you don't know about the
15 Inquiry?" I said "No. What Inquiry?" As a police
16 officer, I was already more than suspicious. This
17 seemed to only confirm what I was already feeling.
18 He replied by saying:
19 "It is only an internal investigation and there is
20 nothing to worry about."
21 Q. Did you pursue it further? Did you say "What is the
22 investigation into? What is it about?"
23 A. Again, when I questioned him, he sought to reassure me
24 that Mr Dhasmana was in no way involved in the Inquiry;
25 that it was a purely internal affair and that again, it
0080
1 was of no real concern. He played it down to full
2 extent.
3 Q. What further questions did you ask him in that phone
4 call about it?
5 A. Basically, it was just a question, "Well, what is it
6 about?" He said "It is nothing to worry about, it is
7 just an internal inquiry". That is all I had: an
8 internal inquiry.
9 Q. Did you say anything to the effect, "How does this
10 inquiry relate to my daughter?"
11 A. No, I did not say that, but by him saying "I can assure
12 you Mr Dhasmana is not involved", that at that point in
13 time I took it at face value. Obviously, with the
14 benefit of hindsight, perhaps I should not, but I did
15 take it at face value at that time.
16 Q. When was your next contact after this with the hospital
17 or with Dr Joffe or with anyone connected with the care
18 of your daughter?
19 A. At that point, again, and after thinking about the
20 conversation, once I put the phone down, I was even more
21 determined to get her records. I can be a very
22 determined person. So I was intent upon obtaining those
23 records. An agreement was reached with the hospital
24 that because of the size of her medical records, that if
25 I wished to view them, they would be brought to the next
0081
1 clinic by Dr Joffe, that he held for the Royal Devon and
2 Exeter Hospital, and that if I were to attend there,
3 a room would be made available for me to peruse those
4 documents whilst he undertook his clinic and he would
5 make some time available for me at the end of that
6 consultation in order for me to discuss Verity's records
7 with him.
8 Q. I think part of the reason for that was the cost of
9 photocopying them all if you wanted them photocopied?
10 A. The explanation given to me was that it would be very
11 expensive to photocopy them because they were very
12 extensive, so this would be the best solution. So an
13 appointment was made for his next clinic. I was given
14 a contact name of Liz Orchard at the Royal Devon and
15 Exeter Hospital who would be the liaison point in
16 co-ordinating the provision of a room and confirming its
17 appointment.
18 The day before that appointment I rang Liz Orchard
19 to ensure everything was in place, and I was told that
20 somebody must have forgotten and that it would not be
21 possible, and that I would have to reschedule for his
22 next clinic, which would be at least four weeks later.
23 That is in fact what was agreed, and that I would be
24 written to with the date of his next clinic, which he
25 could not provide me with at that moment. I never
0082
1 received a communication from them.
2 Q. So it was not until the end of 1997 that you got the
3 records application form?
4 A. That is correct, yes.
5 Q. But going back to the conversation you had in April with
6 Dr Joffe on the telephone, and the reason I put some of
7 these questions to you, I think you appreciate that
8 Dr Joffe for his part does not accept that the conversation took
9 place as you describe it.
10 A. Correct.
11 Q. You were put on enquiry, and you were a police officer
12 used to following lines of enquiry. You had time
13 because you were at home on the sick?
14 A. Correct.
15 Q. You have not hesitated in the past to write letters, you
16 or your wife, on matters that concern you?
17 A. Correct.
18 Q. You told us you are a determined person who follows up
19 lines of investigation?
20 A. Correct.
21 Q. The suggestion that there was some investigation
22 involving Mr Dhasmana cropping up bizarrely in the
23 course of conversation about your daughter must have set
24 alarm bells ringing?
25 A. Yes, it did.
0083
1 Q. So did you write to ask "What is this investigation
2 about? You mentioned the investigation. Tell me more.
3 I am not satisfied with your answers", because you were
4 not satisfied with his answers?
5 A. No, I was not. Again, obviously I discussed this with
6 my wife and faced the dilemma that she felt she had
7 dealt with the death of Verity and had put it behind
8 her. I obviously had not, although I did not realise it
9 at the time, and again, the situation between us was not
10 good. The stresses imposed on a relationship following
11 the death of a child are enormous, and the cost in
12 relationships is tremendous. She did not want me to
13 pursue this any further, feeling that it would drag her
14 back and not wanting to face the emotions she had gone
15 through previously, she did not want me to pursue that
16 any further. So I was faced with a situation where
17 I had a strong desire inside of me to know more, but my
18 wife and for my family, and I had two other children
19 then, for their sakes, if I was to pursue this, it had
20 to be surreptitiously, and I did not want to go behind
21 her back, so I waited.
22 Q. So that explains why you pursued the records. Why did
23 you not pursue the rest of the enquiry?
24 A. I think basically because I was seeking evidence. I did
25 not want to have anything more from the hospital other
0084
1 than in written form. Again, knowing the value of
2 evidence in written form, I wanted to have the records
3 first, because I felt that that might give me some clue
4 as to what direction I should then pursue. So, hence,
5 I was still waiting, expecting these records, bearing in
6 mind that I had asked for them many, many months before,
7 and as will be seen, they did not arrive until
8 November. So I had to wait in order to get some actual
9 degree of physical evidence.
10 Q. You tell us in your statement -- I am not going to go
11 through the dates you set out in your statement, because
12 it is there or will be there for everybody to read, the
13 dates when you made various telephone calls asking for
14 the records and eventually getting them in November.
15 You told us earlier you did not know about any of
16 what one might describe as the Bristol problems until
17 you heard about the GMC hearings on the media?
18 A. Correct.
19 Q. When roughly was that?
20 A. What happened, Mr Chairman, was, as I stated previously,
21 I was certified sick. I would not rise from bed until
22 about 10.15 in the morning. On 13th October 1997,
23 I came down in my dressing-gown into what we term the
24 dayroom, and as a force of habit, turned the television
25 on.
0085
1 The lead story on the local news was film footage
2 of Mr Dhasmana and Mr Wisheart walking up the street and
3 entering the GMC building at the start of what was
4 billed as an Inquiry. It was at that point of time that
5 I knew, without doubt, that I had been lied to and I had
6 been deceived, and I knew from that point onwards that
7 Mr Dhasmana's involvement in my daughter's surgery was
8 crucial to my finding out what went wrong.
9 As a result of seeing that television programme,
10 I was so incensed and angry at the deception that
11 I phoned the television company immediately and they
12 provided me with the name of a lady that had been
13 featured on the programme, whose child had undergone
14 surgery at the hospital --
15 Q. Just to take this shortly, you got in touch with her and
16 through her with other parents?
17 A. That is correct.
18 Q. And am I right in thinking that it is your anger at
19 being deceived, as you feel you were, that has driven
20 you since?
21 A. That is correct, yes, it is. It is a quest for the
22 truth.
23 Q. I have asked you a number of questions. I know some of
24 them may be distressing, is there anything else you
25 would like to add by way of your account of what took
0086
1 place?
2 A. Mr Chairman, there are only two things which have
3 concerned my wife and I throughout this period. The
4 first is that it is recorded on at least two occasions
5 in my daughter's medical notes that the parents are
6 extremely sensible, seem to have a good grasp of the
7 situation, and are identified as being intelligent
8 people. They knew of my occupation.
9 Having identified us as being "sensible,
10 articulate, intelligent people", why did they choose to
11 deny us the information about our daughter? When I read
12 a letter, some weeks after her death, which implies and
13 states that the only real course of action for her is
14 a heart and lung transplant, we are absolutely
15 devastated that so much should be in her medical notes
16 about her condition and her care and her future, that we
17 knew nothing about, that that grieves me and will grieve
18 me until the day that I die. I feel that I was entitled
19 to that information. If my daughter was in such
20 a severe state that they were considering a heart and
21 lung transplant, that I, as the father, should have been
22 made aware of that. And I never was.
23 To be treated as disrespectfully as though I know
24 nothing, and I need to know nothing, is an absolute
25 insult. I appreciate there are going to be situations
0087
1 where surgeons have to withhold information, but they
2 are supposed to be good judges of character, and if they
3 can identify that we are sensible, then I feel that both
4 my wife and I warranted significantly more information
5 than we were ever given.
6 I want to know why we were deceived and we are
7 left in a situation now where our daughter has been
8 buried, our life has been wrecked, and we have to live
9 with that for the rest of our lives. That is one
10 thing. But with the revelations that have come out over
11 these last few years, it has totally destroyed the faith
12 and the standing that I previously held the medical
13 profession in, and having had close working
14 relationships for over 30 years with it, I find that
15 very, very difficult to come to terms with.
16 I want to see the medical profession put back in
17 a state where it has public confidence; where the people
18 of this country respect doctors for what they are and
19 what they can do, but in the same respect, they must
20 deal with us accordingly. We are not imbeciles. We are
21 not unintelligent, and when it is our children that are
22 being dealt with, not only do we need to know what is
23 being said about them, we want to know. If they deny us
24 that information, then they are denying us an absolute
25 right to decide about the future of our children.
0088
1 I can put my hand on my heart and on my daughter's
2 life, both my wife and I, had we known that our daughter
3 was potentially in need of a heart and lung transplant,
4 then we would not have put her through the operations
5 that she went through; we would have had her for as long
6 as we would have had her and enjoyed her for what she
7 was, and been grateful for it. We feel we were denied
8 that opportunity, and that is something I can do nothing
9 about, but must change.
10 MR LANGSTAFF: Mr Curnow, thank you very much for answering
11 my questions. The panel may have some of their own.
12 Examined by THE PANEL:
13 PROFESSOR JARMAN: The question of what Mr Dhasmana said to
14 you about the risks, I think you said that it is the
15 risk of any operation. Did you appreciate that it was
16 an open heart operation with cardiac bypass and things
17 like that?
18 A. No, I did not, and to this day, I still believe that it
19 was a closed heart procedure.
20 Q. Did they say what they were intending to do?
21 A. The only explanation that I received was that the
22 pulmonary artery would be detached and that this tube
23 would be inserted in its place. I was not aware that it
24 would be classed as an open heart procedure until you
25 have just told me.
0089
1 Q. I haven't seen the medical records either, so I am not
2 certain what they intended to do. I may be able to see
3 them. But you realised that it was a heart operation
4 and might be a bit more than an average operation,
5 perhaps?
6 A. Yes, I did.
7 Q. The second thing is, when Verity collapsed on the ward
8 in the ITU, you said that there was no doctor on hand?
9 A. Correct.
10 Q. But this was in fact an intensive treatment unit?
11 A. It was.
12 Q. Were you surprised that there was no doctor available?
13 A. I expected a doctor to be there, and I cannot say at
14 this time what the time-scale was between Verity's
15 collapse and his arrival, but it seemed an inexorably
16 long time. It may only have been seconds, probably
17 minutes, but it seemed a lifetime.
18 Q. Yes, I appreciate that.
19 A. I think and feel, and from my experience in other
20 hospitals, where, in an ITU unit, I have invariably seen
21 a doctor on hand in the ward or very close by, that was
22 not the case in the ITU unit in the Children's Hospital
23 in Bristol when I was there.
24 Q. But you felt there should have been a doctor available?
25 A. Very much so, Mr Jarman.
0090
1 Q. The third question is with regard to your offer to make
2 a donation to the hospital. You mentioned a ventilator?
3 A. Yes.
4 Q. Did you select a ventilator for some particular reason?
5 A. I think because Verity was so dependent upon it, and we
6 felt that that is what had kept her alive from the date
7 of the operation to her death; that the provision of
8 a similar unit would be the most beneficial, in our
9 eyes. But we were open to advice and we sought advice
10 from the hospital on what would be most appropriate, but
11 that was our first thought, as to what might be
12 appropriate.
13 Q. But you did not have any fear that there might be any
14 difficulties with her being on ventilators?
15 A. I had no knowledge about the case of my daughter. I had
16 simply the thought this had kept her alive and was
17 a piece of equipment that would be vital in other
18 children's cases.
19 Q. The last question is, with regard to the medical
20 profession, you feel that patients not only need to know
21 but want to know, but you also mentioned earlier on
22 about your wife perhaps not wanting to face this. Do
23 you appreciate that sometimes it is difficult for
24 doctors to get it quite right, because some people do
25 not always want to know?
0091
1 A. I do, sir, but I also would like to see that the
2 information is made available so that those who do wish
3 to see it have access to it and know where to gain
4 access to it, so that, again, the choice is made by
5 them. If they do not wish to consult and to view the
6 documentation, or to find it, they have that option.
7 Q. So the main thing is that the information is available,
8 if they need it?
9 A. Correct.
10 Q. If they want it?
11 A. Correct. If it is there and it is their choice, that it
12 is made freely available, transparently and openly for
13 all to see and those who wish to undertake further
14 questioning, further investigations into the hospital,
15 the doctors, procedures, even, a database where
16 a child's operation could be explained in lay terms,
17 would benefit parents. Doctors, through no fault of
18 their own, are not always good at putting it in layman's
19 terms. That can lead to confusion. Anything which
20 alleviates that and enables people to understand what
21 the risks are, can only serve to improve the
22 patient/doctor relationship.
23 Q. Did you have any knowledge that, I think it was from
24 1st November 1991, patients have a right to have access
25 to their medical records?
0092
1 A. I do now.
2 Q. But you did not at the time?
3 A. No.
4 Q. So do you think that maybe patients ought to be made
5 more aware of this?
6 A. I do. Again it is a matter of information. When we
7 were asked to sign the consent form for my daughter's
8 operation, my wife signed that solely on the basis of
9 the information supplied to us by the medical profession
10 and we took it at face value. I now feel that consent
11 was obtained fraudulently, because the information that
12 was available, as I now know, was substantially
13 different. Had I known then what I know now, as I have
14 said, we would not have signed that consent form.
15 PROFESSOR JARMAN: Thank you very much.
16 THE CHAIRMAN: I have no questions. Is there
17 a re-examination?
18 Re-examined by MR LISSACK:
19 MR LISSACK: Thank you very much, sir. Before I ask the
20 very little I have to ask by way of re-examination, may
21 I thank you for what you handed down. It helps
22 enormously.
23 Four matters I would like you to clarify from your
24 evidence. I will give the issue in the paragraph and
25 the page in the manuscript for cross-referencing. The
0093
1 first is issue I1, paragraph 16, page 49, lines 16 to
2 19. This is the passage in your evidence in which you
3 were telling us that you were told during Verity's
4 operation to go into the town and have a cup of tea.
5 What I would like to ask you is this: first of all, were
6 you offered a choice as to whether you remained in the
7 hospital during her operation, or left it?
8 A. No, Mr Chairman, we were categorically told that we were
9 not to remain in the hospital: that we must go
10 elsewhere. The suggestion was to go down town, get
11 a cup of tea, do some shopping and come back in a couple
12 of hours.
13 Q. So far as you were concerned, were you happy to get out
14 of the hospital, or would you have preferred to have
15 stayed there?
16 A. No, Mr Chairman, as I said previously, if I could have
17 been in the theatre with Verity, then I would have
18 been. Had I been given the choice to remain in the
19 hospital close at hand, then I would have been there,
20 and so would my wife.
21 Q. The second matter, issue I1, paragraph 18, transcript
22 page 50, line 10 onwards, it refers to the passage
23 where, after Verity's operation, you go in to see her
24 for the first time in the intensive therapy unit. You
25 explained to the Inquiry how your wife reacted to that
0094
1 in particular, you being better prepared for it.
2 Did anyone on the hospital staff prepare you for
3 what you might see?
4 A. Mr Chairman, there was very, very little assistance in
5 our time at the Children's Hospital in relation to
6 preparing my wife for what she was about to experience.
7 It was very much again a matter of fact: "This is what
8 is going to happen. She will come out of theatre into
9 the recovery room and then into ITU. There will be
10 drips and drains. Don't be frightened, it is okay."
11 That is insufficient. We could see children in
12 the intensive therapy unit as we walked past. We were
13 never taken in there. We were never shown it, we were
14 never explained what the machines were, or what they
15 were for. That, I think, itself would have helped my
16 wife when faced with the situation of seeing this what
17 can only be described as horrific picture of the child
18 that she has borne into this world. Anything which can
19 actually prepare somebody, which it cannot do fully,
20 would at least ease the burden, and again, we were not
21 given that opportunity.
22 Q. The third matter, issue I5, paragraph 24, two places in
23 the evidence, page 51, line 21, page 61, line 1. The
24 issue is: being hurried out, my words not yours, of the
25 hospital after Verity's death.
0095
1 What I would like to understand, first of all,
2 please, is this: was the matter that so upset you being
3 asked to leave the room because somebody else needed it,
4 or being asked to leave the hospital generally?
5 A. It was being asked to leave the hospital. As I have
6 stated, we were given insufficient time to be with
7 Verity to mourn. I quite appreciate the pressure there
8 is on hospitals to provide accommodation and the fact
9 that we were asked to leave, to vacate the room that had
10 been provided with us, was not of itself a problem. But
11 we did feel very much that once our child had died, we
12 were no longer welcome within the hospital, and we felt
13 very, very pressurised to leave that hospital, to the
14 point where, at one point in time, whilst I was taking
15 our belongings from the room to our vehicle, that the
16 nurses were actually helping. It did not seem as though
17 they were helping us in a general way, but by the time
18 that we had got back to our room the first time, even,
19 some of our belongings were out in the corridor, and
20 they were not taken out by us or our family, so we felt
21 very much pushed out of the hospital and that was very
22 hurtful.
23 Q. Related to that, you will understand there is a tension
24 between providing counselling and providing privacy,
25 because if you provide one, you can't provide the
0096
1 other. From your perspective, what was more important
2 to you in the immediate aftermath of Verity's death: to
3 have somewhere private with your wife or to have someone
4 with you giving you appropriate and sensible
5 counselling?
6 A. In our particular case, privacy is what we sought and
7 privacy was what we were denied.
8 Q. The fourth and last matter is this, it is slightly
9 related. It is I5, transcript page 83, lines 22 to 25:
10 you have spoken more than once about the strain on your
11 relationship with your wife in the aftermath of Verity's
12 death. Firstly, were you ever offered any marital
13 counselling?
14 A. None whatsoever, Mr Chairman.
15 Q. Secondly, had you been offered it, would you have
16 accepted it?
17 A. That is a difficult question to answer, but I would
18 have --
19 Q. That is why I asked it.
20 A. I would have liked the opportunity to at least consider
21 it.
22 MR LISSACK: Thank you very much indeed. That is all that
23 I ask, sir, thank you.
24 THE CHAIRMAN: I am most grateful, Mr Lissack.
25 MR LANGSTAFF: Mr Curnow, thank you very much for coming to
0097
1 give your evidence. As you will know, you are free to
2 go or to stay as you wish.
3 THE WITNESS: Thank you.
4 THE CHAIRMAN: May I join in thanking you again, thank you
5 very much indeed for coming to speak to us. As you
6 know, the Inquiry will go on for a long time. If you
7 have any other help you would like to give us in any
8 way, submit a statement or in whatever other form,
9 please know that you can do so.
10 THE WITNESS: Thank you very much for your kindness, sir.
11 (The witness withdrew)
12 MR LANGSTAFF: Sir, now would perhaps be an appropriate time
13 for a break before Michelle Cummings.
14 THE CHAIRMAN: Yes, shall we say 15 minutes?
15 (12.06 pm)
16 (A short break)
17 (12.30 pm)
18 MR LANGSTAFF: Sir, thank you for the extra few minutes.
19 I believe it may have been of assistance both to our
20 next witness, Mrs Cummings, and to myself. The next
21 witness, Mrs Cummings, please.
22 Michelle, I think you prefer to be known as
23 Michelle.
24 MRS CUMMINGS: Yes.
25 MR LANGSTAFF: You will have gathered by now, because you
0098
1 have been here on more than one occasion, that in order
2 to take the oath, if you would not mind standing, and
3 you prefer to affirm, I think?
4 MRS MICHELLE CUMMINGS (AFFIRMED):
5 Examined by MR LANGSTAFF:
6 Q. Michelle, you were, I think, born on 21st January, 1967?
7 A. Yes, I was.
8 Q. So you were 20 years old when your daughter Charlotte
9 was born, and she is the daughter you are going to tell
10 us about?
11 A. Yes.
12 Q. Just predicting at this stage the end, as it were, you
13 are going to tell us of her death ultimately?
14 A. Yes, I am.
15 Q. But can I ask you about your husband Robert? He,
16 I think, had the misfortune to be born with Fallot's
17 tetralogy?
18 A. Yes, he was. Rob was born in 1964 and I believe he was
19 diagnosed when he was three months old, and he was
20 placed under Mr Wisheart's care in 1975. His operation
21 was in October 1980, and he had corrective surgery. He
22 is nearly 35 this year and he is very well and very
23 healthy. I know he and his mother feel they had
24 excellent care in Mr Wisheart and his medical team.
25 Q. So he thanks Mr Wisheart, and no doubt you do too?
099
1 A. Absolutely.
2 Q. Since Charlotte, you have had two other children: Lucy,
3 who I think is now 9?
4 A. Yes, that is right.
5 Q. And Christian, who is now 7?
6 A. Yes.
7 Q. So far as Lucy is concerned, when she was born was there
8 a heart and lung problem?
9 A. Yes. Lucy, I was two months pregnant with Lucy when
10 Charlotte died, and although she went term in the
11 pregnancy, she actually was prem-size born. I think she
12 was referred to as a "hibernation baby". She was taken
13 to intensive care and they found she had a heart problem
14 and a lung problem, and Dr Jordan was called and he came
15 straight out and thankfully, the heart problem was
16 a patent duct, which apparently is quite common in small
17 babies. She had a lung infection because I think she
18 was quite distressed when she had been born. She spent
19 three weeks in special care and she was on oxygen and
20 high dependency for a while. Then she came home and she
21 has grown into a wonderfully healthy child.
22 Q. So you have particular reasons to feel grateful for the
23 care and consideration you had from Dr Jordan at that
24 time?
25 A. Absolutely brilliant. I mean, he came straight out --
0100
1 Q. When you say "straight out", the baby was born in
2 Bristol?
3 A. The baby was born at Southmead Hospital. Once the
4 hospital realised the problems, they contacted Dr Jordan
5 and he came straight out to see her and to actually
6 examine her, and I believe he scanned her. He spoke to
7 myself at length, how I felt about the situation,
8 bearing in mind it was I think only seven months from
9 when Charlotte had died, and obviously both myself and
10 Rob were extremely distressed at the prospect of having
11 to relive Charlotte's death again in Lucy, and he was
12 absolutely -- he put himself out, he came out, he
13 examined her and he was quite clear in his diagnosis and
14 quite correct in his diagnosis, and as I say, she
15 progressed wonderfully and is now a healthy 9-year-old.
16 Q. You knew Dr Jordan from the history of Charlotte?
17 A. Yes, I did, and because Dr Jordan was also Robert's
18 cardiologist, as Mr Wisheart was also Robert's surgeon.
19 Q. So almost a family relationship, as it were?
20 A. Yes, you could say that.
21 Q. You have with you, I think, is it your statement that
22 you have there?
23 A. I have, yes.
24 Q. And beside you two diaries which you have uncovered
25 because you have a habit of keeping things?
0101
1 A. Yes, I have.
2 Q. Those are diaries of 1988 and 1989?
3 A. 1988 and 1989.
4 Q. In due course, we may have a look or you may tell us of
5 some of the entries which are in there.
6 A. Yes.
7 Q. Charlotte was your first child, born on 12th March 1987,
8 and born here in Bristol at Southmead?
9 A. Yes, she was.
10 Q. The birth was normal?
11 A. Yes. I was induced, but apart from that, it was no
12 problems.
13 Q. But I think straight after the birth, she went into the
14 incubator?
15 A. Yes. When we were taken back to the ward, they took her
16 away, I assumed to do the normal blood checks and
17 everything. When they brought her back to my side, she
18 was in an incubator, because they said she was cold. At
19 least, at that point they thought she was cold after the
20 birth, and she was placed by my bed and I was asked for
21 the time being not to take her out and touch her, so her
22 temperature could come up.
23 Q. So born on the 12th. On the 13th, the next day, she was
24 checked by the paediatrician?
25 A. No, she was checked on the afternoon originally.
0102
1 Because she was born in the morning, they classed her as
2 one day old, I believe, so the paediatrician came round
3 on the afternoon and examined her, and said that he
4 thought he heard a murmur, a heart murmur, and the
5 minute he said that, I was, you know, straight away
6 I was -- alarm bells were ringing because of Rob's
7 condition, but he felt at that point it was hard to say
8 what it was, and he felt it was -- he said it was quite
9 normal for children sometimes to be born with a slight
10 murmur, and I think he referred again to patent duct,
11 which was a possibility, they thought, but because I was
12 so concerned, he was going to refer it to the
13 Registrar -- I believe she was a lady, I cannot remember
14 her name -- to actually come out and check her over and
15 see if they could throw any light on it, really.
16 Q. You have a very clear recollection of that?
17 A. Yes.
18 Q. You were 20 years of age at the time?
19 A. Yes.
20 Q. Had you actually been working before the birth of
21 Charlotte?
22 A. Gosh, yes.
23 Q. You are now a woman's development worker?
24 A. Yes.
25 Q. A youth worker undertaking a degree?
0103
1 A. Yes.
2 Q. What were you working as at the time?
3 A. Up until -- when I left school, I cannot remember back
4 now. I was trained as a graphic artist, initially, and
5 then I worked for Bristol City Council as an
6 environmental worker with young people, and I gave up
7 work when I was about 5 or 6 months pregnant with
8 Charlotte.
9 Q. Going back to Charlotte's story, after they detected the
10 heart murmur, what happened? Did they go on checking
11 Charlotte?
12 A. Yes, they took her for regular scans and in fact
13 I remember accompanying them on several of them, and
14 they were quite clear that they said they could not
15 really see what the problem was, they could not
16 understand why they were hearing what they were hearing
17 and that at that point they still did not think it was
18 necessarily anything to be overly worried about, but as
19 the week progressed, it was clear that she was not
20 responding and they were unable to bring her out of the
21 incubator. Her temperature was not rising and she was
22 subsequently put on observations. I believe it was
23 on -- if I could just check my notes --
24 Q. You may be looking at paragraph 7.
25 A. Thank you. Yes. It was on 16th March that they asked
0104
1 for Rob's medical notes. I assume they called the BRI
2 and I know I gave them Dr Jordan's name, and Rob's notes
3 were sent the following day. Subsequently, Dr Jordan
4 was contacted and he arrived on the 18th, and it was
5 8 o'clock on the evening. I remember that because it
6 was visiting time.
7 Q. When he arrived, he examined Charlotte?
8 A. Yes, he introduced himself to me. He obviously already
9 knew Rob, and he explained that he was going to take
10 Charlotte to scan her heart and to see what the problem
11 was, if there was anything.
12 Q. At Southmead?
13 A. This was still at Southmead Hospital.
14 Q. So the scan was at Southmead?
15 A. Yes, the scan was at Southmead.
16 Q. Then he spoke to you?
17 A. He spoke to us before the scan. He took her for the
18 scan and brought her back, and we were invited to go
19 into the sister's office, where he explained to us that
20 Charlotte was seriously ill, and that the nature of her
21 defects was that at that stage he was not sure whether
22 there was anything they could actually do for her. He
23 was also concerned as to whether she would survive the
24 night. If she did, then he wanted her to be moved to
25 the Children's Hospital, where further tests and
0105
1 examinations, and a catheter, could be carried out, so
2 that they could actually confirm the diagnosis and
3 decide exactly what treatment should could have, if any.
4 Q. So that night was a fraught night for you?
5 A. It was awful. Absolutely awful. Dr Jordan insisted on
6 Charlotte having intensive care, but there were no beds
7 available in the actual Intensive Care Unit at
8 Southmead, so he insisted on, I think it was bank nurses
9 that they got in, to actually monitor her. There were
10 two nurses that stayed with her all of the night. She
11 was continuously monitored.
12 Q. If he wanted her in the Children's Hospital, if she
13 survived the night, was there a reason given to you why
14 she could not have gone to the Children's Hospital
15 straightaway, rather than stay where there was no IT
16 room for her, the night at Southmead?
17 A. I think at that point, if I remember rightly, they were
18 concerned over how stable she was, because she was so
19 poorly.
20 Q. So it might be difficult to move her?
21 A. Yes, at that point that was the indication that we got:
22 that she was extremely fragile. I do not remember
23 anybody specifically giving me any reasons why she was
24 not moved that night, but the indications we had were
25 that she was very fragile and they wanted to see how she
0106
1 responded overnight before they moved her.
2 Q. So when she was moved -- which I think was the next day?
3 A. Yes, it was.
4 Q. Moved by ambulance?
5 A. Yes.
6 Q. Was there a whole team that went with her? How was she
7 transferred?
8 A. She was transferred by incubator, and if I remember,
9 nurses went in the ambulance.
10 Q. Just nurses?
11 A. That is my recollection. If there were other people,
12 I do not remember, to be honest, I am sorry.
13 Q. You followed in your husband's car or your car?
14 A. My husband's car.
15 Q. I do not think any other option than the Bristol
16 Children's Hospital was discussed, but on the other
17 hand, I suspect that did not matter much to you at the
18 time?
19 A. I had no reason to question going to the Children's
20 Hospital. Charlotte was in the care of Robert's
21 cardiologist and we had great faith in Dr Jordan and
22 still have to this day. It really was not
23 a consideration for either of us.
24 Q. So she goes into the Bristol Children's Hospital and
25 into Ward 37, was it?
0107
1 A. Yes.
2 Q. And tests and examinations?
3 A. Yes. If I can refer to my notes again, basically they
4 explained that they were going to carry out a catheter,
5 which at that particular time, when it was first
6 mentioned to me, I did not have a clue what that
7 entailed. In fact, Rob explained it to me as well as
8 Dr Jordan, and basically, that entailed putting the line
9 up into the artery and dye going through so they could
10 actually see on a screen how the heart was functioning.
11 I believe that was arranged for the following Monday.
12 In the meantime, she had more scans, x-rays, blood tests
13 and general check-ups. I think I spent a lot of time
14 filling in forms and medical histories, as it was, up to
15 that point.
16 Q. So far as you were told, were there any risks associated
17 with that procedure?
18 A. What, the catheter?
19 Q. Yes.
20 A. We were told as always that, you know, there is
21 a possibility of problems with anaesthetics, and being
22 that she was a new baby, that that was a consideration.
23 I mean, at that point I do not remember anybody going
24 into great detail on any other areas, but it was
25 certainly pointed out to us that she could come back on
0108
1 drips and on monitors, which in fact she did.
2 Q. And the catheterisation was 24th March, so we are now
3 12 days on from the birth. On the day after, the 25th,
4 I think you were told by Dr Jordan what he had found to
5 be wrong with Charlotte?
6 A. Yes. Basically, they had found transposition of the
7 great arteries. She had a narrowing of the aorta,
8 a large hole in the lower chambers, which was so big she
9 had very little wall, and the hole cut through both the
10 valves, which impaired her -- so her valves were
11 leaking, and because of the transposition, she obviously
12 had the problem over the oxygenating of the blood. The
13 ironic thing was the actual size of the hole was what
14 was sustaining her, because the blood was obviously
15 escaping and mixing, so it was all explained. The good
16 thing about it was, from their point of view and ours,
17 that at that point he was hopeful that there were things
18 that could be done for her, and he felt that there would
19 be two operations, one to correct the aorta, which, if
20 I remember, was to be done around about six months,
21 because they felt that as she grew, the aorta could
22 narrow further and restrict her oxygen flow more, which
23 would be potentially dangerous for her, and also, it
24 would interfere with the big operation, with the other
25 defects.
0109
1 Q. So we can get as clear a picture as we can of what you
2 were told at the time, what was in fact being described
3 to you, you will probably now know, was a primum defect
4 in the septum, and coarctation of the aorta, to give it
5 its technical term, together with a transposition of the
6 great arteries?
7 A. Okay.
8 Q. What you were told at the time was what? Were the words
9 "transposition" used?
10 A. Yes, "transposition" was used.
11 Q. And "hole in the heart", or how was the hole described
12 to you?
13 A. The way I have told you. It was described as a very
14 large hole which left very little wall in the lower
15 chambers, and that cut through both the valves.
16 Q. And both the valves, were you told to what, or just the
17 valves?
18 A. Bicuspid and tricuspid.
19 Q. So those terms were actually used?
20 A. Yes, they were, although I have to say I doubt very much
21 on that first initial meeting I would have remembered
22 their names correctly; it was probably later on I was
23 more acquainted with them.
24 Q. Were you with Robert at that meeting?
25 A. I cannot remember, actually. I would say yes. I really
0110
1 do not know, I am sorry.
2 Q. If you had been, even if you were not, I suppose you
3 would have discussed it with him?
4 A. Yes. I mean, I definitely know Rob was there for some
5 of the discussions, because he signed the consent forms,
6 so it would certainly have been explained to him.
7 Q. Was it helpful to have someone who had been through it
8 and knew the terms?
9 A. Absolutely, yes.
10 Q. Do you think you would have understood it otherwise?
11 A. Yes.
12 Q. So he explained two operations were going to be needed:
13 the first to ensure that the aorta was not any narrower
14 than it should be?
15 A. That is right, yes.
16 Q. When was that?
17 A. They hoped that this operation would be roughly within
18 the next 6 months, to correct the --
19 Q. Within 6 months?
20 A. Within 6 months.
21 Q. So 6 months would be the cut-off point at the outside?
22 A. Yes.
23 Q. And the second operation?
24 A. I believe we were told that it would be relatively
25 quick, possibly a matter of weeks after the surgery for
0111
1 the aorta was performed, but I do not think that was
2 explained to us until we saw Mr Wisheart. He explained
3 the reasons why they wished to do it that way, and that
4 was basically because the nature of Charlotte's defects
5 were such that they were all interconnected, so once
6 they went to mend one of them, it interfered with the
7 other, so it left very little time between surgeries to
8 actually correct the other defects.
9 Q. You are jumping ahead to what you now recollect
10 Mr Wisheart was later telling you, but at the time I am
11 asking you about, you are talking to Dr Jordan with or
12 without your husband there, and he is explaining to you,
13 two operations needed, the first within 6 months. Do
14 you remember whether he said anything about the timing
15 of the second?
16 A. No. What he did say was that there would need to be
17 another catheter at a later date to actually update the
18 information, so that they could make an informed
19 decision when they came to actually planning the
20 operation. They needed more information at that stage,
21 and so that they were looking at a second catheter
22 slightly later on.
23 Q. So the way it would work would be the operation to
24 enlarge the aorta, or correct the narrowing of it, and
25 then a catheter to check that had worked?
0112
1 A. I do not know if it was going to be that way round.
2 I believe the catheter would be performed before the
3 aorta.
4 Q. Before the aorta?
5 A. Yes.
6 Q. And then do you recollect what Dr Jordan said about the
7 timing of the second operation?
8 A. Well, basically, that once the aorta had been corrected,
9 then it would be a relatively short time-span between
10 the aorta being corrected and the big operation, but he
11 would give no details as to what the big operation would
12 entail at that time, because they felt they needed more
13 information, and I assumed they would get that via the
14 second catheter, as well as other tests at outpatients
15 appointments.
16 Q. Can I have on my screen, please, 722/167? Can we scroll
17 down a bit? This is a discharge summary which is made
18 after the catheter investigations in March 1987. You
19 can see it is addressed to the GP. It gives the
20 history, the examination, and at the very bottom of the
21 screen:
22 "Echocardiogram showed an atrioventricular septal
23 defect with probable transposition. Cardiac
24 catheterisation showed this was an incomplete defect
25 involving the interatrial septum with transposition of
0113
1 the great arteries and a moderate coarctation of the
2 aorta.
3 "After discussion with the surgeons, it was
4 decided to postpone operative treatment for the moment,
5 as she appeared to be well. She was discharged ..."
6 Can we go to 168, please:
7 "Home not on any specific treatment. She has been
8 seen by Mr Wisheart in outpatients who is planning to
9 deal with her coarctation in about 6 months time, and
10 expects to be able to carry out a Senning operation with
11 repair of the atrioventricular septal defect shortly
12 after the first birthday."
13 A. Yes. Well, you have not asked me about my meeting with
14 Mr Wisheart. As I said, that was my initial talks
15 regarding Charlotte's condition with Dr Jordan.
16 Q. So far as Mr Wisheart was concerned, he was telling you,
17 was he, that there would be the first operation, the
18 coarctation repair, within 6 months, and then there
19 would be a further 6 months or so before the second
20 operation?
21 A. When I finally spoke to Mr Wisheart, which I believe was
22 later in the day, after I had spoken to Dr Jordan, he
23 went over again exactly what Dr Jordan had explained to
24 me about Charlotte's condition, and he went over it on
25 numerous occasions. He also explained that although
0114
1 they had seen the independent defects, they had never
2 actually seen them all together in one child, which was
3 extremely unusual. So there would be a lot of planning
4 involved. He explained that the plan at that point was
5 to operate on the aorta, in the hope of giving her
6 enough time to recover to be able to proceed with the
7 main operation to correct the transposition. We were
8 told that the Senning's procedure would be the procedure
9 that he was looking at at that point, although he had
10 not made any definite plans. That certainly was not
11 where we actually went over the details of any
12 operations.
13 Q. But so far as the timing was concerned, what Mr Wisheart
14 was discussing with you: was that the few weeks after
15 the coarctation repair, or 6 months or so after the
16 coarctation repair?
17 A. To be honest with you, I cannot actually remember the
18 actual conversation that you are referring to. I do
19 remember the initial discussions I had with Dr Jordan
20 were made quite clear, that they thought that once they
21 actually operated on the aorta, it would be a relatively
22 short space of time before they had to correct the
23 transposition. As for actual dates, I am afraid
24 I really do not remember the conversation specifically.
25 Q. Because certainly, what is there in that letter from
0115
1 Dr Jordan is not consistent with what he was saying to
2 you. He may have changed his mind, of course?
3 A. Well, I mean, I cannot speak for Dr Jordan, and
4 I certainly do not know whether Dr Jordan and
5 Mr Wisheart had met up and chatted about Charlotte's
6 case after I had been spoken to. I do not know whether
7 I was spoken to first, before Dr Jordan had spoken to
8 Mr Wisheart. I do not know the details of that. All
9 I can tell you is that straight after Charlotte's
10 catheter, Dr Jordan spoke to us. It was later in the
11 afternoon that I spoke to Mr Wisheart.
12 Q. Did Mr Wisheart, at this stage, say anything about
13 Charlotte's prospects without having an operation?
14 A. I believe we were told that without surgery, the chances
15 were that she -- it was doubtful whether she would reach
16 her second birthday, and that was depending upon her
17 actual state of health. He did not give any categoric
18 statements in that sense, but I did ask him about her
19 life expectancy, and he said he was not prepared to give
20 a definite, because there was no way he could give
21 a definite, but as things looked at that point, he felt
22 it was quite doubtful that she would reach 10.
23 Q. So far as the operation is concerned, did he say
24 anything about the risks of that?
25 A. Yes. I mean, when we discussed the operation itself --
0116
1 Q. At this stage?
2 A. We did not discuss the main operation at this stage.
3 Q. So at this stage a preliminary chat?
4 A. That is right.
5 Q. And then Charlotte, I think, was released home on
6 27th March?
7 A. That is right.
8 Q. And you were able to get on with the business of being
9 a mother?
10 A. That is right. The only thing I will say he did at the
11 first meeting, he actually drew diagrams for us, and he
12 spent a lot of time going over and over these diagrams,
13 so that I could understand what exactly her defects
14 were.
15 Q. Did he draw diagrams on other occasions, when you met
16 him?
17 A. Yes, several. Quite often he drew diagrams to explain
18 what he was talking about.
19 Q. You obviously kept Charlotte under review. I think in
20 your statement to us, between paragraphs 31 and 32, you
21 may have missed out a meeting which took place in April,
22 probably 15th April, at which there were further
23 discussions with Mr Wisheart?
24 A. That is quite possible.
25 Q. If we can just look for a moment at page 722/173?
0117
1 THE CHAIRMAN: Would that include the address.
2 MR LANGSTAFF: It should not, you are absolutely right, I am
3 grateful, Chairman. If you look down to the second
4 paragraph:
5 "The general plan of her management would be to
6 carry out a Senning operation together with the
7 appropriate measures for the primum ASD at about a year
8 of life. For this to be done, the coarctation would
9 have to be repaired first and therefore I would have
10 thought this could be done somewhere between 6 and 9
11 months, if her present condition remains as good as it
12 is now.
13 "I have discussed the general plan with mother
14 and indicated broadly the sort of risks which will be
15 involved with each step. Clearly, whether or not this
16 plan will prove to be the correct one depends on how
17 Charlotte progresses."
18 Had he indicated broadly at this stage the sort of
19 risks which might be involved with each step?
20 A. I actually do not remember this specific meeting, but,
21 I mean, I would clearly say that if he says he did, he
22 did, because I know that when we spoke, he always was
23 extremely careful to explain everything as he went
24 along, so I have no doubts that he would have explained
25 that to me quite thoroughly, as he saw fit at that
0118
1 time. I just do not remember that specific
2 appointment.
3 Q. The date of that, as you have seen, was 15th April
4 1987. If we look at your statement -- perhaps we can go
5 split screen on this, witness 123/10, paragraph 32:
6 "We took Charlotte to see Dr Jordan in
7 outpatients on 3rd June".
8 So that is after the discussions in April?
9 A. Yes.
10 Q. "He told me how pleased he was with Charlotte's progress
11 and was delighted we were able to continue breastfeeding
12 Charlotte, which can be difficult. He indicated that
13 the first operation to correct the aorta would take
14 place within 6 to 9 months, followed by a catheter
15 procedure, with the main operation being carried out
16 quickly thereafter."
17 That is why I was asking you earlier about when
18 the catheter was going to be.
19 A. Yes, I understand what you are saying. All I can say
20 is that was my recollection of the facts as they are,
21 and I have to say that my statement was made without
22 seeing Charlotte's notes, and some of it is 12 years old
23 from memory, so I apologise for that.
24 Q. You do not have to apologise. All you can do is the
25 best you can from your recollection and plainly you are
0119
1 doing that.
2 A. Thank you.
3 Q. It is obviously right that some details may be a bit
4 out?
5 A. Yes.
6 Q. And your recollection of what Dr Jordan was saying at
7 this stage, after he has had the letter from
8 Mr Wisheart, is still that he was saying the main
9 operation was going to be carried out quickly after the
10 repair done to the aorta?
11 A. Well, I think that is probably because with the aorta,
12 I cannot remember, my memory is a bit unsure on this,
13 whether it was a closed heart or open heart procedure.
14 I think it was another open heart, but I do seem to
15 recollect some conversation over actually allowing the
16 child to recover, and 6 months was still considered
17 a relatively short time-span to actually undergo
18 a second operation of such a big nature so quickly.
19 I think that is probably where I am getting my thoughts
20 from, from there.
21 Q. So you had no sense of there being some quite genuine
22 but professional disagreement between Dr Jordan and
23 Mr Wisheart as to the timing?
24 A. No, absolutely not.
25 Q. The 3rd October, you tell us, Charlotte was admitted to
0120
1 Ward 37 for a catheter procedure. Tests were carried
2 out. Who were they carried out by?
3 A. Dr Joffe. Dr Jordan at that time, I believe, was away
4 on holiday, or at least, he was not in the hospital, so
5 Dr Joffe came and introduced himself and told us that he
6 would be the cardiologist looking after Charlotte, for
7 her catheter.
8 Q. Did he tell you anything else which rather took you
9 back?
10 A. Yes. She was due to have the catheter and then, just
11 looking at my notes, it was the Wednesday, so a couple
12 of days later they were planning to do the operation to
13 correct the aorta. This took --
14 Q. Stop, so there is no confusion. He told you he would do
15 the operation two days later, or he told you two days
16 later that --
17 A. No, he told us they were going to do the aorta -- I am
18 sorry, they were going to do the catheterisation, and
19 then a couple of days later, they would actually be
20 doing the correction on the aorta.
21 Q. So she was actually in hospital for the operation to
22 correct the aorta and you just expected it to be
23 a catheterisation?
24 A. Yes.
25 Q. So how did you react to that?
0121
1 A. I think we were shocked at first. We had not expected
2 it. However, we were not annoyed by this; we just
3 thought that if that was the way they felt, you know,
4 once they had done the second catheter, that they wanted
5 to proceed, we were quite happy for that to happen. It
6 was just that we were not aware that that was what was
7 being planned at that point.
8 Q. So if you had been told in advance that that is what was
9 going to happen, first of all a catheter and then if
10 necessary an operation, you would have been prepared for
11 it?
12 A. Initially we were prepared. We knew sooner or later
13 this operation was going to happen. We just were not
14 aware at that particular point that they were planning
15 to carry the operation out. For us personally, when you
16 know that your child, at certain points it has been
17 indicated that certain operations are going to take
18 place, you do mentally prepare yourself as you near the
19 time that these procedures will happen. As I said, we
20 did think we were only going in for a catheter, so, yes,
21 which he initially told us they were planning to correct
22 the aorta, it was a shock. However, we were not -- I am
23 not saying we were not worried because we were obviously
24 very worried, but we were quite happy for that to
25 happen, because we knew that it was, you know, on the
0122
1 cards.
2 Q. So she went down and had her catheter. Then she came
3 back and Dr Joffe spoke to you after that, did he?
4 A. Yes. He came back to see us and it was good news,
5 actually. The aorta had not narrowed any further and so
6 on looking at the new medical evidence that they had
7 found via the catheter, it was felt that the aorta
8 correction could be postponed, it was not necessary and
9 the aorta at that point was posing no risk to Charlotte,
10 which meant that they could postpone the main operation,
11 allowing her to become stronger.
12 Q. You are sure something was said about postponing or
13 delaying the main operation?
14 A. I think -- I cannot remember the exact words used, no,
15 but the implication was that Charlotte would have time
16 to actually grow and gain in strength. There would not
17 be such an urgency after the aorta correction to
18 actually carry out the second operation. That is my
19 recollection.
20 Q. Again, it is a question perhaps of recollection and the
21 time that may have gone past, but if we can have a look
22 at 1620/130, can we take it down below the address,
23 please? It is a letter which is dated November 1987,
24 I can tell you. It has been highlighted. It is from
25 Mr Wisheart's Senior Registrar:
0123
1 "...pleased to see this 8 month old girl who has
2 been diagnosed to have a transposition of the great
3 arteries with partial AV canal defect and mild
4 coarctation of the aorta. She is making good progress
5 and putting on weight and feeding well.
6 "I have put her name on the waiting list for the
7 Senning operation around the age of one year, which will
8 be about February/March 1988 ..."
9 That is the sort of time Mr Wisheart had been
10 talking about in the earlier letter to Dr Jordan which
11 I have shown you?
12 A. Yes.
13 Q. So his view was that there was no delay or any
14 alteration in the original timetable?
15 A. All I can say is, I have given my recollection and I am
16 not saying that there may not be errors in that, in the
17 time span; I am just explaining to you as I understood
18 it at the time the information was given to me. As
19 I have already explained, I knew from when I actually
20 spoke with Dr Jordan that they were looking to operate
21 around a year, but we have not actually spoken about
22 that yet. I mean, at that point, I do not actually
23 remember that part being spoken about to me personally,
24 however, it might well have been.
25 Q. In any event, you were very pleased, I am sure --
0124
1 A. Yes, extremely pleased.
2 Q. -- that Charlotte was doing as well as she was?
3 A. Yes.
4 Q. She went on, then, until I think when she was about
5 11 months of age, in the early February of 1998?
6 A. Yes. She was having some difficulties breathing, and
7 she was sweating a lot and her general energy levels
8 were very poor. I was extremely worried, she seemed to
9 take a nosedive, as it were, so I called to my GP and he
10 in turn came out and an ambulance was called and we were
11 rushed straight to casualty at the Children's Hospital,
12 and she was duly examined and sent to the Ward 37.
13 The diagnosis was that she was suffering from
14 bronchitis.
15 Q. It turned out in fact to be a viral infection?
16 A. It was a viral infection, yes.
17 Q. On that occasion, that was the first occasion you met
18 Helen Vegoda?
19 A. Yes, she had been newly appointed as the cardiac liaison
20 officer, and she was introduced to myself in the baby
21 unit, I believe by Mr Wisheart on his rounds. She was
22 basically -- it was explained she was there to act as
23 mediator between parents and the medical teams and to
24 offer support and counselling to families whilst they
25 were in hospital, and in fact Helen actually gave a lot
0125
1 of support when we were not actually in hospital as
2 well. She kept in contact and any concerns that we had,
3 we were quite free to phone her and she would act on our
4 behalf. So her help was invaluable.
5 Q. On the occasion of Charlotte's admission with her
6 infection, when you were able to speak to Mr Wisheart,
7 did he speak to you?
8 A. I only remember the conversation at this moment, of him
9 introducing Helen Vegoda to me. That is not to say --
10 I have a feeling it was around that time that we did
11 talk about her actual main operation, because we were
12 getting close to the time. I suspect we had spoken
13 about it on an earlier occasion, but I definitely know
14 it was around that time we went into the full details
15 around about that period, into the actual ins and outs
16 of the Sennings procedure and all the risks.
17 Q. Let me ask about the way you have put it in your witness
18 statement. Again, it is just to clarify, really, what
19 your recollection is of it. It is witness 123/13. It
20 is paragraph 40. Just have a moment to look at that:
21 "Mr Wisheart explained her role was to listen to
22 parents and to act as a go-between ..."
23 "At that same meeting, Mr Wisheart explained that
24 Charlotte would have to wait a clear month after her
25 infection had disappeared before she would be able to
0126
1 undergo her operation, but he hoped that the operation
2 would take place before her first birthday."
3 A. Yes, that is correct.
4 Q. Then you add the next paragraph:
5 "I think it was at this time, or shortly
6 thereafter, that I had my first long meeting with
7 [him]."
8 A. Yes, that is correct.
9 Q. It is not easy sitting here in the Inquiry remembering
10 things with precision. Some time about the time that
11 she was in with her infection, there was a discussion
12 about the timing of the operation, was there?
13 A. Yes, there was.
14 Q. And it does not matter, really, whether it was at the
15 time that Helen was introduced to you or whether it was
16 later or whether it was shortly before, but the idea was
17 that it was going to take place before your daughter was
18 one year old?
19 A. Yes, that is correct.
20 Q. As we will see from the history, it did not in fact take
21 place until she was what, some 15 months or so old?
22 A. 15 months old. I think there were several reasons for
23 that. Initially her operation was moved along, or she
24 had to wait slightly longer because of the infection she
25 had had and she had been on antibiotics and medication,
0127
1 so you have to wait a clear month, or at least, we were
2 told you have to wait a clear month after infection.
3 I also received a letter from Mr Wisheart which said
4 that we were quite -- because I had -- I do not
5 remember, I must have written to him or I had spoken to
6 him at some point, over my concern that we were nearing
7 her birthday and the operation had not been done, and
8 there was some concern over other children. Charlotte
9 at that point was fairly healthy, and it was felt it was
10 acceptable for her to wait because there were other
11 children who were perhaps in more urgent need of their
12 operation.
13 Q. He wrote you a letter, I think?
14 A. Yes, he did.
15 Q. We can see that at 123/34, and again, on my screen
16 first, please, let us take it down to "Dear
17 Mrs Cummings". It is dated 18th March 1988. Let us go
18 through it for a moment.
19 "Dear Mrs Cummings, Thank you for your enquiries
20 about Charlotte. You are quite right that we had hoped
21 to operate in either February or March, but have simply
22 not found it possible. I am sorry about these delays.
23 Unfortunately, I have not been able to arrange her
24 operation in April, and I know this will be
25 a disappointment to you."
0128
1 It must have been?
2 A. Yes. I was extremely distressed about the operation
3 being postponed.
4 Q. "However, I will do my best to arrange it in May if that
5 is at all possible. It is of course vital that she is
6 fully free of her chest infections before she has her
7 operation, and as you know, we do regard her blueness as
8 mild rather than severe and for that reason,
9 unfortunately, a number of other children appear to be
10 more urgent than Charlotte is. If you wish to discuss
11 this with me, I will of course be happy to see you."
12 Did you take him up on that, or did you accept
13 that?
14 A. I believe I did speak to him about it, but exactly when
15 that was, I really do not remember. I do not remember
16 if I wrote to him or spoke to him on the phone.
17 I certainly would have contacted him over that, yes.
18 MISS MACLEAN: Mr Langstaff, before we go on, could I just
19 ask for your help. When we see these documents and
20 scroll them for the proper reasons, it is sometimes
21 difficult for us to catch the date, if you could just
22 confirm that for us.
23 MR LANGSTAFF: It is 18th March, 1988.
24 MISS MACLEAN: Thank you.
25 MR LANGSTAFF: I will try and get that clear for everyone
0129
1 next time. I hope that on the earlier occasions when
2 I have referred to a document, it should be on the
3 LiveNote transcript which you will have.
4 If we could go back from that letter, then, to
5 your first long meeting with Mr Wisheart ...
6 A. Yes, he explained to us the operational procedure that
7 he was going to perform and that was called the
8 Sennings, and he explained it to me in terms of that he
9 was basically going to cut canals into the -- this is
10 how I remember it. He was going to cut canals into the
11 heart and make bridges so that the oxygen and the blood
12 could travel round the right way. The problem with this
13 procedure was that as it stood with the transposition
14 the wrong side of her heart was pumping, and he would
15 not be able to change that; that would stay the same.
16 He also explained the risks that with this procedure,
17 there was a risk that when she grew these canals may not
18 grow with her, in which case, another operation may be
19 necessary, which he was not -- he said it was not --
20 they did not like to have to do it, but obviously, if it
21 was necessary, they would have to do it.
22 We went into quite a lot of detail --
23 Q. Could I just ask you to stop there, because I have
24 something which I think may help. If we can go to
25 page 1620/141, this can go straight on to the public
0130
1 screen. That is a diagram which you recognise, I think?
2 A. Yes. There is a lot of scribble where he went over and
3 over.
4 Q. Let us look at the whole page first, and then we will
5 focus on the heart, if we may. If you can just take the
6 drawing, if possible, that was a drawing, was it, which
7 Mr Wisheart made for you?
8 A. It looks extremely like one, yes. I mean, it
9 certainly -- he is going over and over it again and
10 again. I certainly remember him drawing me these
11 diagrams, you know, or diagrams extremely similar.
12 Q. Let us focus on the top part of that page, blow it up as
13 best we can. There are various arrows?
14 A. Yes.
15 Q. Is that because he was going over it and over it again,
16 or what?
17 A. I do not remember when this drawing was particularly
18 drawn. He used to do this to show which way the blood
19 and the oxygen were flowing, and to try -- I am not sure
20 whether this is the one where he was trying to describe
21 where he would make the bridges and canals, but, yes,
22 certainly the arrows are where I think he was trying to
23 describe to me the flow of the heart.
24 Q. So if it was not this diagram, it was with some other
25 diagram that he described what he was going to do?
0131
1 A. Yes.
2 Q. I am sorry, I took you out of your description. You
3 were talking about the risks?
4 A. Yes. Basically, as I said, the risks of the canals not
5 being able to grow with her, he also spoke a lot about
6 the risks with the anaesthetic, and he was quite clear
7 that there was a risk of brain damage, although he did
8 express that with modern anaesthetics, this risk was
9 certainly less than it would have been years previous,
10 because technology had progressed.
11 However, with the nature of the operation and how
12 long she would be in theatre and the heart bypass, it
13 was certainly a risk that had to be considered.
14 Other risks that he explained to me were regarding
15 should she not be compatible with a heart bypass
16 machine, that not all children were compatible with
17 heart bypass machines, and obviously you would not know
18 that until you attempted to put her on to it. Then the
19 obvious one of actually getting her off the bypass
20 machine. Those things he was very clear in explaining
21 to us. He also explained the risk of ventilation, that
22 not all children or individuals are compatible with
23 actually going on to a life support machine. Again, it
24 was one of those things you would not necessarily know
25 until you tried.
0132
1 There were also risks -- I asked him actually what
2 things we would need to be prepared for if things went
3 badly, and obviously, the ultimate one was that she
4 would die on the operating table. We did discuss that.
5 There were also risks that she would need a pacemaker,
6 and I believe there was talk around paralysis as well,
7 and brain damage. I also asked him what would happen if
8 he actually got to theatre and viewed Charlotte's heart
9 and realised that the operation they had planned they
10 were unable to do, or that there were problems there he
11 had not foreseen, and he said in those cases,
12 unfortunately, you can only act in accordance to what
13 you are dealing with and that he would have to assess
14 and address the situation when and if it happened.
15 I asked him if Charlotte would grow up to live
16 a normal healthy life, and he said that "Obviously one
17 would hope so. I mean, that is why we are doing the
18 operation, to give her the chance", but he said he could
19 not give me that guarantee because he did not know. But
20 obviously, he said he would do his very best for her and
21 that he would do everything in his power to look after
22 her, as would his team. I was extremely satisfied.
23 Q. Roughly how long did you spend with him?
24 A. Probably over an hour, I should think, and I have to say
25 that we had this conversation on several occasions.
0133
1 I would go home and think about something, and then go
2 back and talk to him again about an area I was not sure
3 about. So on that first initial time, I think it would
4 probably be an hour, at a minimum, an hour.
5 Q. Was Robert with you?
6 A. I do not know that Rob was on that actual talk, no.
7 Q. Did you raise with Mr Wisheart the possibility of any
8 other type of operation than the one he was describing?
9 A. Yes, I did. I had actually -- I have been wracking my
10 brains trying to think where I heard of this from.
11 I really do not know whether it was television or the
12 press, but I had heard of an operation called the
13 switch. It was reported to be carried out in America,
14 and I had asked Mr Wisheart if Charlotte could have the
15 switch and if she could not have it here, could they
16 send her to America. At that particular time, the
17 switch really was in extremely early days, and if my
18 memory is correct, I believe he said that even in
19 America, in the hospital, they had only carried out
20 I think he said about seven operations. And there was
21 a hospital in London, and I do not remember which
22 hospital it was, I am afraid, but they had carried out
23 I think about four switches, and as of yet, he was not
24 happy that that operation would be suitable for
25 Charlotte. There were reasons for that, one because it
0134
1 was an extremely pioneering piece of surgery at that
2 particular point, and secondly, the nature of
3 Charlotte's defects really did not make her a suitable
4 candidate for the switch.
5 I have often wondered, I do not think even now
6 Charlotte would have been a suitable candidate for the
7 switch, because of the nature of all her defects.
8 Q. So this was April/May 1987?
9 A. Yes.
10 Q. And Mr Wisheart was telling you that in London there had
11 only been about four such operations?
12 A. To my recollection. I may have that number incorrect,
13 but, yes, it was a small amount of operations carried
14 out in London at that time.
15 Q. If that number is not correct, it is a single figure
16 number?
17 A. Yes, it was.
18 Q. Did you talk about any other procedure?
19 A. Yes, we talked about the "mustard" procedure, which
20 I believe was the procedure for transposition that
21 predated the Sennings, if you like and again, he -- I do
22 not remember a lot of details, I have to say, about the
23 mustard procedure, but I do remember that it was felt
24 that, again, Charlotte would be better off with the
25 Sennings, because of the amount of defects that she had
0135
1 and the nature of her defects. I do not really recall
2 going into great detail over the mustard procedure.
3 Q. Where had you heard of the mustard procedure?
4 A. Mr Wisheart told me.
5 Q. So he told you that there was the alternative?
6 A. Yes, he did.
7 Q. And you do not really remember very much about it?
8 A. No, I do not.
9 Q. Plainly, he was emphasising the Sennings procedure as
10 being the appropriate procedure for Charlotte?
11 A. I do not think he was emphasising in that context. He
12 was explaining the operations that were available for
13 that particular procedure, but when it was looked at,
14 the nature of her defects, it was decided by, I assume,
15 the medical team as a whole, that the Sennings procedure
16 would suit Charlotte's condition better than the mustard
17 procedure.
18 Q. Anything about the risks of the Sennings procedure
19 itself?
20 A. Again, I have not got a clear memory of that. 75 per
21 cent, I believe, is the success rate for the Sennings
22 procedure that sticks in my mind. I think that is
23 roughly the figure we were given.
24 Q. You have told us already about some of the delays that
25 took place. Ultimately, Charlotte was admitted in 1988,
0136
1 June 1988, to Ward 5 of the Bristol Royal Infirmary?
2 A. Yes, she was.
3 Q. You are looking at your diary because you have a diary
4 entry there, have you not?
5 A. Yes, I have.
6 Q. Is that for 9th June?
7 A. It is for 9th June, the day she actually went into
8 hospital, and all I have written was:
9 "Charlotte was admitted into hospital at 10.30 in
10 the BRI, Ward 5. Charlotte had blood tests, ECGs,
11 x-rays, her temperature taken, blood tests, urine tests,
12 and had a look at intensive care" and in capital
13 letters, "I FELT AWFUL" and that was my entry for that
14 day.
15 Q. What was awful?
16 A. Intensive care.
17 Q. Why?
18 A. Because there were extremely ill people and children on
19 monitors, lines, tubes, drips, the children looked
20 puffy, and if you have never seen it before, it is quite
21 a shock, to be honest. And to know that in a few days
22 your child is going to look like that. Yes. It was
23 awful.
24 Q. On the same day, did you have a chat with Mr Wisheart
25 about anything?
0137
1 A. Yes. There was a problem. At that time in the Ward 5,
2 they only had one ventilator, which was a life support
3 for 0 to 1 years and there was a very small baby already
4 on this life support machine, and there was, at that
5 point, concern as to whether Charlotte's operation would
6 actually be able to go ahead, because nobody knew at
7 that point how long this baby would need this
8 ventilator. As it turned out, the following day he
9 returned and told me that the operation could go ahead.
10 I did not ask -- I do not know exactly what happened
11 with the baby. I never asked, but Charlotte's operation
12 did go ahead.
13 Q. So there was at least for a few hours a risk of the
14 operation not proceeding because there was not
15 sufficient equipment?
16 A. Yes.
17 Q. And may I ask -- perhaps it is obvious -- that must have
18 both worried and to an extent annoyed you?
19 A. Yes. Yes, it was very distressing.
20 Q. You signed the consent form and the operation took place
21 the next day?
22 A. Charlotte was taken down to theatre in the morning. She
23 had been given a pre-med. Both Rob and I signed the
24 consent form and we had spoken earlier with medical
25 teams, I believe the anaesthetist came up and spoke to
0138
1 us at some point, although I do not honestly recollect
2 what was said, but I know they came. I spoke to
3 Mr Wisheart before we went down to prepare for the
4 theatre, and he told us he would speak to us later on
5 after the operation.
6 Q. Did someone show you a video of what to expect in the
7 ICU?
8 A. Yes. That was not actually at that particular time.
9 I am not sure when that was. It was some months earlier
10 I believe we sat down and watched a video, or at least
11 I did. It may have been one of the occasions Charlotte
12 was in overnight or whatever, but I do have
13 recollections of watching a video. If I remember
14 rightly, it was a trial thing they were doing, a new
15 idea of actually -- because the parents who live a long
16 way away, they were thinking that they could send this
17 video out to them.
18 Q. Rather than ...
19 A. If they were not able to come up to the hospital, this
20 video could be sent with a package which explained, you
21 know, to the parents who did not want to come. I think
22 that is what I watched, but I cannot tell you when that
23 was.
24 Q. The day of the operation: what did you do?
25 A. Oh, gosh. Well --
0139
1 Q. Briefly.
2 A. Charlotte went down to theatre, and then we felt that we
3 wanted to go home. We could not do anything in the
4 hospital at that point. We did not live very far from
5 the hospital, so we spent the day at home with our
6 family, and we rang at regular intervals to actually
7 find out her progress and the people we spoke to were
8 extremely good and they would even ring down to speak to
9 the theatre sister, to actually find out how things were
10 going. So basically, that was how our day was spent.
11 Q. You came back ultimately to see Charlotte I think late
12 in the evening. What time had she gone down to surgery?
13 A. I thought it was about 7, but having found my dairy, it
14 states in my diary she actually went down at 9 o'clock,
15 so my diary is probably right. She came back at
16 7 o'clock. We went up to see her and we were shown into
17 the intensive care, and I walked into the intensive care
18 and it was a very small room, and there were four beds.
19 You walked through the door and there was a bed either
20 side and a bed up further on either side. I walked
21 straight into the room and the nurse stopped me and said
22 "You have walked past her". I looked, and I did not
23 even recognise her. I did not recognise my own child,
24 and it was quite awful. Quite awful. And a shock.
25 Q. Did you speak to Mr Wisheart that day?
0140
1 A. That evening, yes, he came to see us.
2 Q. What did he say about the operation?
3 A. He had carried out the operation he hoped he had been
4 able to carry out. He was happy at that point that the
5 procedure had so far been successful. He had managed to
6 patch the wall in the lower chambers, and he had
7 attempted to patch one of the valves, the one that was
8 leaking the most. He did indicate that at that point he
9 was not sure how long that patch would last on the
10 valve, but he hoped it would give Charlotte some time to
11 recover, and grow some more before they looked at her
12 valves again.
13 Initially he was pleased with the way the
14 operation went, but he did say the next few days would
15 be critical for her and that he would be back to see her
16 later.
17 Q. Your impression of the ITU where she was: what was that?
18 A. Claustrophobic. The old intensive care at Ward 5 was
19 where -- where Charlotte was had felt very
20 claustrophobic. There was not a lot of room in there.
21 I do know that they had just finished the new Ward 5
22 further up so they were going to be moving, but,
23 however, you have mixed patients, adults and children in
24 together, and it was noticeable if a patient was having
25 difficulties and the medical team arrived, it was very
0141
1 cramped for them to actually carry out and work, but
2 they managed and they did. However, from a parent's
3 perspective, I was closed in.
4 Q. You say in your statement there was clearly a lack of
5 trained staff?
6 A. Yes. I do know, when Charlotte was in intensive care,
7 that she had a student nurse looking after her. I think
8 there was a question, being that it was the BRI, it was
9 not the Children's Hospital, it was a mixed intensive
10 care, whether there were actually enough paediatric
11 trained nurses, and I spoke to many of the nurses about
12 this, and it was something they themselves were
13 extremely concerned about. I know they were extremely
14 concerned over the resources that were available to them
15 at that time. So, yes, there were definitely students
16 there, and at times, instead of having a 1-to-1, it was
17 a 1-to-2, so one nurse would be looking after two
18 patients, as opposed to just looking after the one.
19 Q. Did they all seem to you to be not only familiar, but
20 regularly nursing children?
21 A. If there were children actually in intensive care, then
22 obviously they would nurse the children, and the
23 adults. I mean --
24 Q. You say in your statement you do not believe the nursing
25 staff were trained paediatric nurses?
0142
1 A. Not all of them, no.
2 Q. What gave you that impression?
3 A. Because I said to them.
4 Q. And they said?
5 A. Yes.
6 Q. So far as you could find out, was there any trained
7 paediatric nurse there?
8 A. Yes, there were some trained paediatric nurses there.
9 Q. Was there one there all the time, or were they there on
10 and off?
11 A. Gosh, I cannot say whether they were there all the
12 time. I know Charlotte did not always have a paediatric
13 nurse looking after her, it depended on the shifts and
14 everything, but I know the nurse looking after her was
15 paediatric trained at times, at other times I know she
16 was not. That is all I can say.
17 Q. Of the nurses you were told were paediatric trained, did
18 they seem to you to have other patients to care for as
19 well?
20 A. As I said, sometimes you found that you had a nurse 1 to
21 1, so there was one nurse looking after Charlotte on
22 a continual basis; other times there was one nurse
23 between two patients.
24 Q. And the ward which Charlotte was in was mixed children
25 and adults?
0143
1 A. That is right.
2 Q. So when it was 1 to 2, 1 nurse to 2 patients, was the
3 other patient sometimes an adult and sometimes a child?
4 A. I do not remember if that was so all of the time.
5 I know in the latter part of her stay in Ward 5
6 intensive care, there was another child in there at the
7 same time. What happened was that generally the nurses
8 would -- whoever was on duty would look after -- they
9 would be sharing the two children they looked at. I do
10 not specifically remember anything else at that point.
11 Q. From what you suggest, I just want to make sure this is
12 right, so it is not taken the wrong way, there may have
13 been occasions when one nurse was looking after, as it
14 were, on her right, Charlotte and on her left, an adult?
15 A. Oh, yes, yes.
16 Q. You told us in your statement, about four days after
17 Charlotte went into the Intensive Care Unit, that she
18 went into cardiac arrest several times?
19 A. Yes.
20 Q. And Mr Wisheart was there?
21 A. Yes.
22 Q. You give an explanation. Let us have a look at it for
23 the moment on the screen, 123/23:
24 "Charlotte's particular problem on that occasion
25 was that the patching of the valves was not holding out
0144
1 and she was not coping well with the adjustment of the
2 ventilator."
3 A. That is correct. I know I got the valve wrong,
4 subsequently. My recollection was -- it was not the
5 valve that Mr Wisheart patched that actually caused the
6 problem; it was the other valve.
7 Q. Tell me about her not coping well with adjustment of the
8 ventilator.
9 A. That was something again we were warned of. They refer
10 to it as one step forward, two steps back, so they, at
11 different times, will try and lower the ventilation to
12 lower the child's dependency upon the life support, and
13 this -- sometimes the child can't cope with it, so it
14 appears for a day or so you are doing well and the
15 ventilator has been turned down and everything is going
16 along smoothly, and then they cannot cope and the
17 ventilator is turned up again. It is a see-saw effect,
18 and Charlotte was very up and down with this.
19 Q. So you were there all the time?
20 A. Yes.
21 Q. And you understood that there were obviously problems
22 with how the ventilator was working or how she was
23 adjusting to the ventilator?
24 A. Yes.
25 Q. Just moving on a little, after that occasion, which she
0145
1 got through, some four days after when she had her
2 cardiac arrests, she stayed on in the Intensive Care
3 Unit for quite some time, I think?
4 A. Yes, she did.
5 Q. If we could just have on the screen, please, 1620/105,
6 it is the note of 27th June 1983, please.
7 "Doing well today, chest sounds good. Dear
8 colleagues, thanks for taking over the continued post-op
9 care of Charlotte. She is day 14, post repair of TGV
10 repair [transposition of great veins]. Her main
11 problems post-op have been fluid retention and
12 consolidation of the left lung only. This responds to
13 extensive [I am not sure of the next word] as well as
14 cefuroxime (now stopped)."
15 And it deals with the medications.
16 So the main problems there set out were fluid
17 retention and a lung consolidation?
18 A. Yes.
19 Q. Is that what you were given to understand by the nurses
20 at the bedside?
21 A. We were certainly told that she had a wound infection
22 and some sort of infection in her body, and she had
23 pneumonia as well. We were told those things. But
24 obviously we were also told that the valve which had not
25 been patched also had given her problems. Whether that
0146
1 was a result of the pneumonia as well adding pressure,
2 I do not know.
3 Q. If we move on, I think there came a time when the
4 intensive care rooms were being closed down because
5 a new Ward 5, a new Intensive Care Unit, was going to
6 open?
7 A. That is right. It was widely being spoken about, and
8 the new Ward 5 intensive care unit had finished being
9 built. So it was obviously due to be opened. What
10 happened next was, we noticed that as the days were
11 going on, less patients were being brought into the
12 Intensive Care Unit, and eventually it stopped. We were
13 told that the Intensive Care was being shut down to open
14 the new Ward 5, and that two politicians would be coming
15 around to open it, and that was Kenneth Clarke and
16 Edwina Currie.
17 Q. You put "Kenneth Baker" in your statement?
18 A. Yes, I apologise. We were really concerned about this,
19 because Charlotte, after she had had the cardiac arrest,
20 was seen to be in limbo. She was not moving either way
21 at that point, and we were extremely concerned. She was
22 extremely poorly, and there was another child who was
23 also extremely poorly, and we were told, without
24 question, that the ward, the Intensive Care, was being
25 closed and that was it. I was not happy about this at
0147
1 all.
2 What happened next was that we were told that they
3 had tried to find life support machines in other parts
4 of the hospitals and had only been able to find one and
5 as the other little girl at that point was considered in
6 a more critical condition, it was opted that she should
7 be given that life support machine.
8 Charlotte was to be sent to the Children's
9 Hospital and put in intensive care there on a life
10 support machine, but they could not move her for
11 a couple of days. Anyway, inevitably, the visit was
12 happening and the children had to be moved.
13 Q. Just so I understand what you understood the position to
14 be, was it that because two senior politicians were
15 invited to come to open the new Intensive Care Unit,
16 that everyone in the old Intensive Care Unit had to be
17 moved out?
18 A. Yes.
19 Q. And had to be moved out even though that may involve
20 some difficulty with them and some possible adverse
21 effect upon their care?
22 A. Yes.
23 Q. In the way of the world, was the other IC unit the new
24 one, was that actually operating even though it had not
25 yet been, in quotes, "opened"?
0148
1 A. No, it was not. I do not know of any patients actually
2 in that part of Ward 5 at that point.
3 Q. But no-one suggested to you, "Well, it is just a matter
4 of wheeling her bed down the corridor into the new
5 ward"?
6 A. No.
7 Q. They wanted her to go --
8 A. No, she had to go to the Children's Hospital and they
9 assured me that she would be given -- she had to have
10 a life support machine, obviously, at the Children's
11 Hospital, so when the day came for the move, which, off
12 the top of my head, was Monday 27th June, they came
13 around and they took her off the life support machine,
14 and she had to be hand ventilated because she could not
15 breathe on her own.
16 THE CHAIRMAN: Would you like a short pause, or shall we go
17 on?
18 A. No, please go on. She was moved by ambulance to the
19 Children's Hospital, straight through casualty, and up
20 to the Intensive Care and they did not even know we were
21 coming. There was no intensive bed for her, no life
22 support machine, and they were still hand ventilating
23 her, so we went through to the baby unit and they were
24 full up. There was no cot for her in there, because
25 they were hoping they could have set up a mini intensive
0149
1 care in one of the rooms for her.
2 Q. Could I just ask you to pause there, because I am going
3 to show you another document. You will not necessarily
4 have seen this. It is page 722/63. As you say, it is
5 dated 27th June. It is in relation to Charlotte. If
6 you look at the screen for a moment, I will just read it
7 to you. This is a note made at the Children's Hospital:
8 "Transferred from Ward 5", I draw attention to the
9 next four words, which may have to be explained by
10 others in due course, "arrived unannounced as usual."
11 Then it deals with the situation.
12 A. I have seen that.
13 Q. You have seen that?
14 A. Yes.
15 Q. It goes on to deal perhaps with the quality of the notes
16 that came with her. We can scroll down.
17 "Post-op complicated by pneumonia, now resolved.
18 Unable to tell from the notes when extubated. Query,
19 two days ago."
20 That means taken off the ventilator?
21 A. It was the same day, I can tell you.
22 Q. So she went without a ventilator to the Children's
23 Hospital?
24 A. Yes.
25 Q. Being bagged?
0150
1 A. Yes.
2 Q. There was nothing in the notes, it would appear, to show
3 when she had last been on the ventilator, but your
4 understanding was, she needed a ventilator?
5 A. Yes. She had had the arrest on the Thursday, and this,
6 I think, was the Thursday, or possibly not, I am sorry.
7 Since she had had the cardiac arrest, they had tried on
8 numerous occasions to get her off the ventilator,
9 because one of the concerns I was told about was that if
10 they were on the ventilator too long, that can cause
11 problems in itself and this was, I think, by this stage
12 we are looking at two and possibly nearer three weeks
13 she has been on the ventilator at this stage.
14 Q. There was no ventilator for her at the Children's
15 Hospital?
16 A. No, there was not and there were no beds in the baby
17 unit, and she ended up being put on the bed of a child
18 who had gone down to have his tonsils out whilst they
19 decided what to do with her. I have to say, at this
20 point Mr Dhasmana, who at the time was caring for
21 Charlotte because Mr Wisheart was away, he actually had
22 no knowledge of what had gone on until his return, and
23 he was furious, that is the only way I can describe it.
24 The man was furious. He had not even been told she had
25 been moved at that point, and he was absolutely livid
0151
1 when he got to the Children's to find us there and in
2 that predicament. In fairness to the man, there was
3 very little he could do at that stage. It caused untold
4 distress for the nurses and doctors who were actually
5 looking after her, let alone the unacceptable gamble
6 that we had to witness being taken with her life.
7 Q. For the sake of completeness, may I ask for the screen
8 to go to 1260/0104. It is nothing, I think, you will be
9 able to comment on particularly, but let me tell you
10 what it says. If you look down, please, 24th June, just
11 before the transfer, and the plan at the very bottom
12 with the tick:
13 "To wean ventilator tomorrow, hopefully. 25th, it
14 should be 25-6, ventilated on half breath. Improved
15 left lung. Chest x-ray improving. Good respiratory
16 pattern", the arrow meaning "for extubation".
17 That would probably be the day before transfer?
18 A. No.
19 Q. That does not accord with your recollection?
20 A. No, she was transferred on the Monday, which would be
21 the 27th.
22 Q. Maybe even two days before transfer, or for extubation
23 at some stage, but your recollection is that it was just
24 a matter of hours before the transfer, was it?
25 A. Not a matter of hours; it was literally, they took her
0152
1 off the ventilator and they moved her.
2 Q. The visit of the politicians, you want to correct,
3 I think, your statement, the bottom of page 22, the top
4 of page 23, where you mention that subsequent inquiries
5 show the plaque showing the opening of the ward shows
6 the ward to have been opened at the end of August. You
7 want to correct that to 21st September?
8 A. Yes.
9 Q. But the visit of the politicians ...
10 A. Took place on June 27th. There is no doubts about
11 that. The nurses were on strike, were demonstrating,
12 and when we had been moved to the Children's Hospital,
13 we had heard that Edwina Currie was going to come up and
14 visit at the Children's, and I went outside to
15 demonstrate with the nurses. She pulled up at the front
16 of the Children's Hospital, saw us all, would not get
17 out of the car and sped off around the back. We threw
18 some eggs, I have to say. Which I took satisfaction in
19 at the time.
20 Q. And what was the reaction of the nurses on Ward 5?
21 A. The nurses in Ward 5 were very distressed. They were
22 not happy about what was happening, and again, they were
23 just demonstrating at the time. I do not think it is
24 fair to say that was the only issue that they were
25 demonstrating on, I think there were a range of things
0153
1 that at the time they were looking at, but nevertheless,
2 that was certainly something that I discussed with many
3 of them, and one of the major things that they were
4 outraged about at the time was that this was a brand new
5 unit and yet because two Members of Parliament were
6 visiting, they decided to waste money repainting it,
7 when it had not even been used or opened at that point.
8 They felt that that was totally wrong, which it was.
9 Yes, so there was a lot of unhappy people at that
10 time. I think it would be fair to say, as well, that
11 there was a lot of pressure on the majority of the
12 medical team, because of what was happening.
13 Q. If I can take you back to the Children's Hospital, where
14 Charlotte went there, not into the ICU, I do not think,
15 but where?
16 A. She went on to -- I again thought it was Ward 37, but
17 that was the baby unit. It was Ward 33, the general
18 surgical ward, and what they -- as I said, she was on
19 the bed of the child who had gone down for a tonsillitis
20 operation. They then had to ask a parent if they would
21 be prepared for their child to be moved down to the
22 non-surgical ward so that Charlotte could have a bed and
23 that party graciously agreed, and Charlotte was placed
24 very close to the nurse's office and everything.
25 All this time, she is still being hand
0154
1 ventilated. It got to a point in the afternoon where
2 a decision had to be made, and it was clear that they
3 could no longer continue to hand ventilate her. It was
4 just a totally ridiculous situation. So it was decided
5 to risk just placing her in an oxygen box, and seeing
6 how she coped. Thankfully, she coped. But again, it
7 was a totally unacceptable position that everybody was
8 put in. And an incredible gamble.
9 Q. And you say in your statement that there were no
10 specially trained nurses around?
11 A. I meant ITU nurses. There were no intensive care
12 nurses.
13 Q. Obviously there were no children's nurses?
14 A. Yes, but I meant she was not having intensive care
15 nurses looking after her, which, you know, I mean, the
16 attention that these children get when they are in ITU.
17 There was also the other issue over the risk of
18 infection on a general surgical ward, so close, which
19 again, could not be addressed because of the
20 circumstances.
21 Q. Just to finish this part of your evidence, if you would
22 look at the screen, my screen first, please, 722/140,
23 this is a discharge letter. It is written by Dr Jordan,
24 and it is in relation to the operation in 1988. She was
25 discharged, it shows, on 11th July 1988. If we can
0155
1 scroll down, please, and having identified that
2 document, let us just show that for a moment before we
3 turn to the next page. Just show it first, the bit
4 I was looking at, please. The bottom of the document.
5 Then can we turn to page 141? Can we enlarge,
6 please, the middle of the page, the paragraph beginning:
7 "She required a moderate amount of inotropic and
8 ventilator support post operatively, but eventually was
9 weaned off both. She had an episode of pyrexia for
10 which no obvious cause was found, around the 6th
11 post-operative day. She was transferred back to the
12 Children's Hospital for further convalescence" and the
13 reason given there is "as she was rather slow to
14 progress."
15 How does that accord with your understanding of
16 why she was transferred?
17 A. It does not.
18 Q. One matter which, in the interests of the Trust perhaps
19 I should put to you for your comment: could we take that
20 off the screen, please and go to UBHT 249/201? Can we
21 get the date at the top? It is minutes of meeting of
22 the Bristol and Weston Health Authority of
23 19th September. Go down to the Chairman's remarks,
24 please:
25 "Visit of the Secretary of State. The Chairman
0156
1 reported that Mr Kenneth Clarke would be officially
2 opening the new cardiac surgery unit and the expanded
3 cardiology department at the BRI on 26 September. All
4 members were invited to attend the short ceremony which
5 would take place at approximately 1 pm."
6 That date, 21st September, is the date you have
7 already mentioned, the date on the plaque?
8 A. Yes.
9 Q. Of course, that does not correspond with the 27th June
10 visit which you recollect?
11 A. No, it does not. All I can say to you is I know that
12 these parliamentary ministers visited the BRI and
13 subsequently the Children's Hospital and we were told
14 they would be subsequently opening the new Ward 5.
15 Whether they were coming for a preliminary visit and
16 came back subsequently, that was not an issue so far as
17 we were concerned. We were told the reason Ward 5 was
18 being closed down at that point was because the MPs were
19 visiting and were opening the Ward 5.
20 Q. After you get Charlotte home in July 1988, she is
21 released on drugs?
22 A. Yes. Digoxin and Frusemide.
23 Q. I think she stayed at home and was readmitted on
24 Christmas Eve of 1988?
25 A. Yes.
0157
1 Q. So she was at home with you, without any readmission for
2 about 6 months?
3 A. Yes.
4 Q. That was a cold and she was able to come back home for
5 Christmas?
6 A. She was. I have to say, she was very poorly and if
7 I remember rightly, we were actually over at my
8 mother-in-law's at the time, when she was taken bad, and
9 I was not happy with her. I thought she was very
10 unwell, and so we decided to take her straight to the
11 children's casualty, and Dr Jordan, who actually was not
12 at the hospital or on duty, it was Christmas Eve,
13 actually came out especially to see her and put our
14 minds at rest and to look at her, which I think shows
15 the dedication of the man. He did not have to, somebody
16 else could have done the job, but he came out himself
17 and he examined her and was able to tell us she was fine
18 and it was a normal childhood cold and we could take her
19 home.
20 Q. On 4th January, in your statement at page 25,
21 paragraph 82, it is 123/26, we had better have a look at
22 that. In paragraph 82 you want to change that date to
23 4th January?
24 A. I said the 1st but it was the 4th.
25 Q. You have checked the date with your diaries?
0158
1 A. Yes, I have.
2 Q. This was the occasion that Charlotte was considered by
3 a doctor from Papworth?
4 A. Yes.
5 Q. What did you understand to be possibly in contemplation?
6 A. I actually did not know I was going to be seeing him
7 when I arrived. I thought it was a normal outpatients
8 appointment. I arrived and we went down for the x-rays
9 before seeing the doctor, and one of the nurses came
10 down and said, you know, "Can you hurry Charlotte in,
11 because there is a doctor here from Papworth to see her"
12 and that was the first at that point that I knew, and
13 I went. I really cannot remember the name of the
14 doctor. He was an extremely nice man, and he spoke to
15 me. First he asked me what I thought the problems
16 were. It was clear, I think, at that point, that
17 Charlotte had deteriorated from possibly over the last
18 couple of months, and he asked me what I thought the
19 problem was, and I said that I thought there were two
20 things that were possibly wrong: possibly the channels
21 from the Sennings, as she was now growing, were not
22 growing with her, or that she was having problems with
23 her valves because of the pumping chamber being on the
24 wrong side. I mean, these were risk factors that we
25 were informed of, so if things were going wrong, that
0159
1 was what I was thinking, and he said he tended to
2 agree.
3 He said that he was down to assess whether
4 Charlotte was a suitable candidate for a heart
5 transplant and he had to unfortunately inform me that
6 she was not. There were a couple of reasons for this.
7 Firstly, he did not think that she was well enough to
8 actually withstand that nature of operation and that
9 they had so few hearts donated for transplant that they
10 had to give them to children who were more healthy, had
11 a better chance of survival. I understood his
12 reasonings, and I knew when I had that conversation,
13 I think that was the start, I knew we were running out
14 of time, big time, then; we were at the beginning of the
15 end, so to speak, and I do not remember a lot more about
16 the conversation. As I said, he was very good at
17 explaining why she was not suitable, and ...
18 Q. Was there another attempt to refer Charlotte for
19 possible transplantation?
20 A. I do not know if it was transplantation. I certainly at
21 some point, and again, I really do not know whether this
22 was at the beginning of Charlotte's life or towards the
23 end, I am very confused on this. There was some talk
24 that Mr Wisheart had spoken with people and I believe it
25 was Great Ormond Street and Professor Yacoub and
0160
1 unfortunately they said no. But I have to say, I really
2 do not know when or where I was told that, at that
3 point.
4 Q. In any event, if we go further forward into 1989, as she
5 is approaching now 2 years of age, on 10th February she
6 became unwell, I think, in severe heart failure?
7 A. Yes. We were at home. Rob was at work, and she was
8 extremely listless. She was sweating profusely. Her
9 colour was appalling. By that stage you know the signs
10 you are looking for, you know what you are looking at.
11 I knew something was seriously wrong. I phoned for the
12 GP to come out, emergency call, and I was told that
13 I should have rung before 10.30 if I wanted a home visit
14 and they would not come out at that point and could
15 I bring her to the surgery at 5.30 that evening. I was
16 absolutely furious. At that point, my mother arrived
17 and I was, I have to say, in a bit of a state, because
18 at this point I really knew she -- I thought she was
19 dying, because she was so poorly. My Mum stormed over
20 to the doctors and basically did not leave until he came
21 back with her, and he walked into the room and looked at
22 her and --
23 Q. The result was immediate transfer to the hospital?
24 A. Absolutely. An ambulance, an emergency ambulance. She
25 was on oxygen: it was obvious that she was in severe
0161
1 heart failure. She was admitted to the hospital and
2 I believe they upped her medications and she was -- one
3 of the major problems she had at that point was that she
4 was taking her medication orally, and she was having
5 problems, I cannot remember what was causing the
6 problems specifically, but basically it was taking too
7 long to get round her body, so they had to intravenously
8 give her her medication, because it was not working
9 giving it orally. That was one of the problem areas.
10 Q. I just ask you to pause there, because I think there may
11 be something else you want to correct in your original
12 witness statement. It is 123/27 -- I say correct, but
13 to add in. Between paragraphs 83 and 84. Although one
14 might get the impression from reading what you said in
15 the statement she was in hospital from 10th February
16 onwards, that is not, I think, the case?
17 A. No, that was not. I have to say that I did not remember
18 this when I originally wrote the statement, but when
19 I read the diaries, she went into hospital on
20 10th February and she was allowed home on the
21 16th February, but was rushed straight back in on
22 Saturday 18th February.
23 Q. So 16th to 18th at home, but apart from that, in
24 hospital from there on?
25 A. In hospital from there on.
0162
1 Q. At the beginning of her second week in hospital, I think
2 Dr Jordan had been away. He came back and came to visit
3 Charlotte. You had a discussion with him, did you,
4 about her problems?
5 A. Yes. He asked me to come into the sister's room and his
6 actual words were, "Michelle, I am sorry, we have hit
7 a brick wall", and what basically he said was that,
8 well, he told me Charlotte was dying, and that the
9 problem they thought was the valves, but it was one of
10 those things that until it went one way or the other
11 they could not -- they did not know exactly how to treat
12 her.
13 There was also the other problem, that he felt
14 that she needed another catheter, obviously, so they
15 could gain more information, and he said that she had
16 become so weak she would not even be able to withstand
17 a local anaesthetic, let alone general. Really, what
18 she needed was two valve replacements, that there were
19 problems with this, namely, in that she was really too
20 young, they really like to wait until the person has
21 stopped growing before they can actually give the
22 valves, otherwise you have to repeat it, the surgery,
23 every so often. The other thing was he did not feel
24 that she would be able to withstand the amount of
25 medication she would need to take if she had a valve
0163
1 replacement.
2 So basically, I think I remember asking him how
3 long we had, and he said he did not know at that point.
4 What he did suggest was that there was a medication that
5 they had at that point only used on adults, and for the
6 life of me, I cannot remember the name, but basically,
7 what this medicine did was enlarged the arteries,
8 I think it was, so that the blood could flow freer and
9 that the heart did not have to work so hard to pump
10 everything round, and he said at that time it had only
11 been used on adults. There were possible side effects
12 with it in her -- I think it was her blood pressure had
13 dropped and things like that; would we consent for her
14 to actually go on this drug, and I said, "Yes,
15 absolutely". And she did.
16 Q. And the effect?
17 A. It seemed miraculous, at the time, from this very
18 lifeless child at the time, she suddenly has her energy
19 back and she wanted to get down out of bed and she was
20 running around the ward and she seemed to pick up. It
21 was amazing, the actual transformation. At that point,
22 I was in the process of planning her birthday party for
23 the ward. She would have been 2 on the 12th, but as it
24 happens, Dr Jordan came round on the 1st March, because
25 she had been doing so well, he said he felt she could go
0164
1 home; that they wanted an x-ray and they wanted a scan,
2 and after that was done, we were free to take her.
3 I was quite relieved she would be coming home, because
4 I did not think she would.
5 Q. The next 24 hours, I can ask you about and you can tell
6 us about, if you would like to, but you do not have to.
7 A. I do not mind. At 10 o'clock in the morning, I walked
8 her with my mother-in-law down for her to have x-rays,
9 and she had her x-rays. Phyllis then went home, and
10 I took Charlotte to the nursery. She used to attend the
11 hospital nursery. I went with Helen Vegoda to go and
12 sit and chat with parents. I used to offer support to
13 other parents. I came back down at about half 12, and
14 at that time she was actually misbehaving somewhat. She
15 had bitten a hole in toothpaste and was squirting it at
16 the nurses and pulling faces through the door at me.
17 I went in and the dinner trolley came in, and I sat her
18 down, and she was fine one minute, but she did not seem
19 very hungry. Then her behaviour changed and she started
20 throwing food about, and I told her off, and then she
21 actually went to attack me and scratched me all down the
22 side of my face, and she was screaming, and I actually
23 told her off very sternly, because I thought she was
24 misbehaving, and she looked very tired.
25 My friend at that point had come in with her
0165
1 daughter who had been for an outpatients appointment,
2 and I decided, I looked at her and I thought "You are
3 tired", so I picked her up and put her into her bed and
4 gave her her bottle, and then I laid her down and my
5 friend Sarah and I walked to the end of the ward.
6 I stopped and looked back, because she was such
7 a regular visitor, she used to know how to play up the
8 nurses so they would take her out of the cot, and it was
9 quite busy on the ward that day, so I looked around and
10 she sat bolt upright. It was really weird and she
11 looked at me and said "Bye bye Mummy". I walked through
12 the doors and I am afraid I smoke, I lit up a cigarette
13 and another mother came through the door screaming at
14 me, that something was wrong with Charlotte and I had to
15 come quickly. We went back into where she was, and she
16 was totally delirious and screaming, like I have never
17 heard. She was screaming terribly, in pain, and all the
18 emergency people were arriving and they were trying to
19 stabilise her. This went on for some time, and I think
20 it was about -- this happened around half 1, and at one
21 point I had her on my lap trying to give her oxygen, and
22 she was fighting, her bodily functions went and they had
23 to put her in a nappy. It was about 3 o'clock.
24 I phoned Rob -- we were told that he ought to come up --
25 and at 4 o'clock they moved her to the intensive care
0166
1 upstairs. Dr Jordan and the other doctors, they fought
2 so hard to save her. She had septicaemia throughout the
3 body and her heart was failing. She just screamed and
4 screamed and screamed, just awful screaming and pain.
5 They could not sedate her because they were desperately
6 trying to keep her going and her heart was getting
7 slower and slower. Eventually, one of the doctors came
8 out and said that she was, you know, going. She was
9 going. We went in and I asked them to switch off,
10 because basically, her heart was beating so slow, she
11 was getting no oxygen to her brain and she had not done,
12 I think it was for over half an hour, anyway. They
13 said, "Will you sit with her for a while?", and "You
14 think about what you want to do", and they lifted her
15 off the bed and she was still all drips and everything,
16 and they gave her to me. She died in my arms at
17 a quarter to 6: that was it.
18 Q. Just take a moment. (Pause). I think you knew you
19 would find it distressing, if you want to have a break,
20 I know you indicated originally you would like to go
21 on. If you want a break, you can have one.
22 MRS CUMMINGS: Do you mind?
23 THE CHAIRMAN: You want a break. We will take 10 minutes,
24 or -- we will retire and you let me know.
25 (2.33 pm)
0167
1 (A short break)
2 (3.00 pm)
3 MR LANGSTAFF: Michelle, are you ready to go on?
4 A. Yes, thank you.
5 Q. Can I turn from the events of the death to what happened
6 afterwards? I do not want to deal with the immediate
7 aftermath. I think you got support from Helen Vegoda
8 which you found useful?
9 A. Yes.
10 Q. Mr Wisheart plainly was very upset?
11 A. Yes, as was Dr Jordan.
12 Q. Dr Jordan helped to the extent of helping to clean
13 Charlotte's shoes?
14 A. Yes. They were incredibly supportive.
15 Q. I think at some stage after that you were asked to
16 consider the question of the post-mortem?
17 A. Yes. I think it was Dr Jordan, I had initially asked
18 him what would happen next, and he asked me and Rob
19 whether we would consent to the post-mortem, and we said
20 yes, we would. He explained this was because although
21 they had a reasonable idea exactly why Charlotte had
22 died, obviously they wanted to clarify it and to make
23 sure, you know, that what they thought was right, and we
24 were happy with that. I do not remember who brought me
25 the form, but I do know that Dr Jordan was there, and if
0168
1 my memory serves, so was Mr Wisheart, and various other
2 people, and the form that they brought me was a white
3 form and the top part was filled with details for
4 releasing Charlotte for post-mortem. Then there was
5 a thicker black line that went across the page, and then
6 underneath was details for donor, donating organs for
7 various things, and it was quite specific as well,
8 because it was broken down into individual organs and
9 things. I remember asking if any other organs could be
10 donated, and Dr Jordan, I think it was, said that at
11 that point they did not really think, because of the
12 nature of her death, that -- and the septicaemia -- that
13 any of the other organs would be suitable for a donor to
14 other people, although they were not sure about the
15 corneas, so I gave that option. I said, "Well, take
16 what you need", you know. "Definitely the heart, and
17 whatever you needed to look at, to keep".
18 I do not remember, I assume it was myself that
19 signed but it could well have been Rob as well, I do not
20 actually remember which one of us signed the form, and
21 it was, you know, all the time it was explained to us
22 and we were very well supported by the medical team.
23 Q. So I think you made a note in your diary, did you, about
24 the post-mortem itself, which was April 1989?
25 A. Yes. Tuesday 18th April, I had an appointment with
0169
1 Dr Jordan at the Children's Hospital at 4.30, and it
2 says "Post-mortem report with Dr Jordan, as expected,
3 [excuse my language], bloody awful, but confirmed all my
4 thoughts".
5 It was quite a sensitive meeting and very candid,
6 and very informative. We talked a lot about the last
7 stages of Charlotte's life and what in fact had
8 happened, and it transpires that as you know, Charlotte
9 already had valves which were leaking and what actually
10 killed her in the end was because the pumping chamber
11 was on the wrong side, it was under pressure because of
12 the leaking valve, and as time went on and things
13 developed, it became more and more stressed in its
14 working, so he explained it by, if that was her heart
15 and there was the valve, as time went on, the pressure
16 built up, it swelled, until in the end the valve was
17 basically not operating at all, so she actually drowned
18 in her own blood, which was why it was not a pleasant
19 death for her, because obviously it took a long time and
20 there was very little they could do to stop it.
21 Q. After the post-mortem, did you come to find out whether
22 or not Charlotte's heart had been retained?
23 A. Yes. We actually spoke about that and he asked me -- in
24 fact I asked him first if they still had Charlotte's
25 heart.
0170
1 Q. You asked him first if they still --
2 A. At the post-mortem meeting if they still had her heart.
3 He said "Yes". At the time I was rather rude, because
4 I asked them if they had learned anything from it, and
5 he took that in good form and basically said that they
6 had learned an awful lot, because it was such an unusual
7 combination of defects together, and that she had helped
8 enormously in their study in trying to further cardiac
9 surgery on children, and I have to say, that was a great
10 source of comfort to both myself and Rob.
11 Q. I think as a matter of record, the post-mortem itself
12 was performed on 7th March?
13 A. Yes. I do not know.
14 Q. Were you able to lay Charlotte to rest at some stage
15 after that?
16 A. Charlotte was buried on 10th March, and her birthday was
17 on 12th March.
18 Q. And some time after, did you ask more than once about
19 what had actually happened to her heart?
20 A. Yes. And not just that particular issue, either, other
21 areas within the post-mortem. Dr Jordan always left an
22 open door for us, and we were told we were welcome to
23 come back and speak to him as many times until we were
24 happy. I think I went back a further two times. I do
25 not know if that is accurate. I have in my dairy that
0171
1 I had spoken to him on subsequent occasions over the
2 next two months. Whether I have confused it with that,
3 but I definitely spoke to him on quite a few occasions
4 about it.
5 Q. I would like to have a look at a letter which we will
6 find at 722/110. We can see the whole letter. This is
7 a letter from Dr Jordan to a pathologist, and you see it
8 relates to your daughter and the post-mortem number is
9 given.
10 "You probably recall this little girl who
11 unfortunately died some little while after a modified
12 Senning operation and who had transposition of the great
13 arteries with mild coarctation and incomplete
14 atrioventricular septal defect.
15 "I have had a few talks with her parents since
16 then [that is obviously right] and am due to have
17 another one fairly shortly, but mother is now asking
18 rather persistently what has actually happened to
19 Charlotte's heart."
20 Is that a fair reflection?
21 A. Probably, knowing myself, yes. If there were things
22 I was not clear on or that I wanted clarification, then
23 I can be rather persistent, until I have the answers.
24 Q. He then goes on with these words:
25 "I think we had better be honest with her and
0172
1 I thought I had better just check with you whether you
2 still have it and whether it would be available if the
3 parents should wish to see it."
4 A. Yes.
5 Q. The "I think we had better be honest with her", can you
6 help with what from your contact with Dr Jordan he might
7 have meant about that?
8 A. Whether he was not sure himself whether he had actually
9 told us already, or whether we were aware they had her
10 heart, I am not sure, but we certainly were, so he
11 himself may be unsure whether he had spoken to us
12 previously about it, but he certainly did.
13 Q. The picture that it might paint to somebody who did not
14 know either you or Dr Jordan might be that you were
15 persistently asking, obviously repeatedly, and his
16 expression, "I think we had better be honest with her"
17 would suggest that he had not answered your questions,
18 or if he had answered them, had not answered them
19 entirely frankly?
20 A. As I say, I am extremely persistent when things are
21 unclear with me and throughout Charlotte's care I took
22 that line of action, if I was not sure how things were,
23 or I was not happy with the explanations, even if the
24 medical people concerned thought they were explaining it
25 correctly to me, I would still be persistent until such
0173
1 times as I understood exactly what they were saying to
2 me. I do not know why he appears to feel that he had
3 not been honest with me, because I certainly knew that
4 we had given permission for Charlotte's heart to be
5 retained, and we were quite happy about that.
6 Q. So when you were asking what had actually happened to
7 the heart, what were you asking about?
8 A. Basically, what they were using it for, whether it had
9 stayed in the hospital or whether it was being used for
10 teaching. I have recollections of him saying that as
11 time went on I think other people -- it had either been
12 sent to other places to be looked at and people had seen
13 it and -- so he explained things around it like that.
14 I just wanted clarification that we had donated her
15 heart and exactly what it was being used for and that it
16 was being used for the reasons we had donated it in the
17 first place.
18 Q. Michelle, since these events, you included in your
19 statement a letter you wrote on 31st October 1998.
20 I will not trouble you to go through it, anyone who
21 wants to see it can see it when it is made available,
22 but essentially it is a letter addressed to Frank
23 Dobson, the Secretary of State for Health, the Prime
24 Minister, various political leaders and others, amongst
25 other people. It is a round robin letter. Essentially,
0174
1 what are you trying to say in a few words in that
2 letter?
3 A. What I wanted to get across and what my family wanted to
4 get across, was, we knew, or looked realistically at the
5 defects Charlotte was born with, and we believe that
6 Mr Wisheart and the rest of his medical team were
7 outstanding in the way that they cared for her and the
8 way that they cared and supported us, and we just wanted
9 people to realise, with due respect to other families
10 and other families who had lost children, that not all
11 parents who had lost children felt as they did, and that
12 we believe that Charlotte received the best possible
13 care from Mr Wisheart and his team, as was available at
14 the time in respect of her operation and that the care
15 that the medical staff and the teams gave her. He was
16 an incredibly, and is an incredibly gentle man, and
17 extremely dedicated to the families and children that
18 have been in his care. That has been our family's
19 experience for over 20 years, as you will remember, he
20 operated on my husband. We just felt that there was an
21 urgent need for this to be made public and for people to
22 realise that, you know, there is -- there is more to
23 this than people may be aware of.
24 Q. I have asked you a lot of questions, some of them may be
25 quite distressing, but is there anything you would like
0175
1 to add which you do not think has been covered?
2 A. I cannot think of anything at this moment, off the top
3 of my head, only to really reaffirm our appreciation and
4 I have not got the words of how I feel, for what
5 Mr Wisheart and his team have done for us. I have
6 a husband and without Mr Wisheart I would not have him,
7 and without Rob I would not have had my children at all,
8 and as much as it has been a terrible, horrendous loss
9 with Charlotte dying, Mr Wisheart and his team were able
10 to give her, in her last six months, after her
11 operation, quality of life that she would not
12 necessarily have had without the operation, and at the
13 end of the day, he was prepared to give her that chance
14 of life, and I can only say that I cannot commend the
15 man too highly, and my respect for the man is beyond
16 reproach.
17 MR LANGSTAFF: I have nothing more to ask you. The panel
18 may have one or two questions.
19 THE CHAIRMAN: We have no questions. Is there any
20 re-examination?
21 MR SHARP: There is just one brief area, if I may.
22 Re-examined by MR SHARP:
23 Q. Michelle, you have touched upon Helen Vegoda?
24 A. Yes.
25 Q. You also mentioned that you yourself had been giving
0176
1 some support to parents who have been involved, whose
2 children were at the hospital and who were undergoing
3 treatment?
4 A. Yes, I did.
5 Q. As a consequence of your experience over quite a long
6 time, are you able to help the panel in this way: how do
7 you feel the arrangements for parental support worked in
8 the time that you were involved at the hospital?
9 A. I felt that they were very good. In my experience,
10 certainly from 1988 when Helen was employed, she was
11 constantly in contact with families that I saw. She was
12 always there or prepared to sit in on outpatients
13 appointments, always at outpatients when I was there,
14 she always came in with me, as I know she did with many,
15 many other families.
16 The nursing staff were also incredibly supportive
17 and helpful, as were the cardiologists and the surgeons
18 themselves. In talks with the parents, it was the usual
19 fears and concerns that a parent would have with a child
20 with a potentially terminal condition, and many of our
21 discussions usually revolved around if it was a new
22 parent and they did not understand fully, you know, the
23 procedures at the hospital, and we would discuss around
24 those and Helen was extremely helpful and able to set up
25 further meetings with doctors or surgeons if a parent
0177
1 requested it, because they were unsure. I mean, those
2 were the general experiences that I had within that
3 area.
4 Q. I think you also mentioned very briefly that Helen had
5 been involved after the death of Charlotte?
6 A. Yes.
7 Q. And was she able to provide and were the team generally
8 able to provide the support that you as a parent needed
9 at that time?
10 A. Yes. They were brilliant. I mean, Helen came to visit
11 us. She wrote letters on our behalf to the Council for
12 us to move. After Charlotte died and we went to the
13 hospital, she was always there to greet us. She helped
14 us around and one of the doctors would always be there
15 to greet us and support us if we went to the Chapel of
16 Rest and that included Mr Dhasmana on one occasion,
17 I have to say. We met him, he came to look for us,
18 I think it was the day after Charlotte died, and he met
19 us in the corridor. He was incredibly, extremely
20 distressed that Charlotte had died. I remember him
21 giving me a big hug and expressing his sorrow: an
22 incredibly genuine man, and very sensitive to our loss.
23 Q. Did I understand you to say that so far as Helen was
24 concerned, her concern extended beyond the immediate
25 confines of the hospital to assisting you with housing
0178
1 problems as well?
2 A. That is right. I actually brought a letter with me,
3 which she actually wrote on our behalf.
4 Q. Thank you. Secondly, so far as the explanations that
5 were given to you prior to surgery, was there anything
6 that could have been done in your view in terms of
7 explaining the problems, explaining the procedures, or
8 explaining the consequences that was not done?
9 A. I do not think there was an area that we did not
10 explore. Everything was explained with extreme clarity,
11 even if it meant them going over the procedure a few
12 times until I was clear in my head. Nonetheless, I have
13 absolutely no doubt whatsoever and feel that everything
14 that was said to us had been -- you know, that we knew.
15 There were no doubts in our minds.
16 Q. Did you at any point feel that you were being misled as
17 to the prospects of success in any way?
18 A. Oh, gosh, no, never. Never. As I said before, I did
19 even, I actually asked Mr Wisheart about Charlotte
20 living and growing up, and you know, as he said, he
21 hoped that the operation would entitle her to grow up
22 and enjoy a normal life span, but he could not guarantee
23 that and was not prepared to guarantee that. No.
24 Nobody ever misled me into believing that this surgery
25 meant that Charlotte would live.
0179
1 Q. Finally this: do you have the support of your family in
2 what you are putting forward today?
3 A. Yes, I do.
4 Q. Do you and your family feel that as a consequence of the
5 extent of your involvement with those providing the
6 services to this hospital, you are able to give
7 a particularly authoritative view to this panel?
8 A. Yes, I do.
9 MR LANGSTAFF: Michelle, may I thank you very much for
10 coming and your courage in giving evidence.
11 MRS CUMMINGS: Thank you.
12 MR LANGSTAFF: And continuing to do so.
13 MRS CUMMINGS: Thank you very much.
14 THE CHAIRMAN: I echo my thanks. I know it was difficult,
15 but I am glad you decided to come and tell us
16 Charlotte's story.
17 MRS CUMMINGS: Thank you very much.
18 THE CHAIRMAN: We are all in your debt. As you know,
19 because you have been here before, as it were, if you
20 have anything else you would like to let us know, you
21 can always get in touch with one of the team. We will
22 be here for a while. If you can help us in any way,
23 please feel free to do so. Thank you very much. You
24 will be shown out now.
25 (The witness withdrew)
0180
1 MR LANGSTAFF: Sir, that is what we have for today. For
2 Monday, we hope to cover the evidence of three
3 witnesses: Ellen Sheridan, who will talk about John's
4 Fontan's operation in 1986; Mrs Plackett, who will talk
5 about a child who survived but with brain damage, which
6 she attributes to the operative care; and Paula Jordan,
7 a child who suffered from a patent ductus and arterial
8 blockage and survived.
9 Sir, I think, so that all understand, they may
10 know your intention normally on a Monday is to start at
11 10.30. I take it that will be the case on Monday?
12 THE CHAIRMAN: Yes. We shall therefore adjourn now and
13 reconvene on Monday at 10.30. Thank you.
14 (3.23 pm)
15 (Adjourned until 10.30 am on Monday, 22nd March, 1999)
16
17
18
19
1 I N D E X
2
3 MR LANGSTAFF:
4 Statement about records and
5 communications from the public ........... 1
6 MR MALCOLM CURNOW (SWORN)...................... 3
7 Examined by MR LANGSTAFF.................. 3
8 Examined by THE PANEL.................... 89
9 Re-examined by MR LISSACK................ 93
10 MRS MICHELLE CUMMINGS (AFFIRMED).............. 99
11 Examined by MR LANGSTAFF................. 99
12 Re-examined by MR SHARP ................ 176
13
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Published by the Bristol Royal Infirmary Inquiry, July 2001
© Crown Copyright 2001