Annex A > Chapter 3 - Developments in the UK, in the Diagnosis and Treatment of Congenital Heart Abnormalities in Children, 1984-1995 > The perspective of children with congenital heart disease

The perspective of children with congenital heart disease

5 The birth of a baby with congenital heart disease (CHD) can be devastating news for the parents. A congenital heart abnormality occurs in six to eight of every 1, 000 livebirths. [4] In other words, every year in the UK, around 3, 500 babies are born with congenital heart abnormalities. Approximately 50% of these babies have a relatively mild abnormality which may cause no problems for the child at any stage in life and may even `cure' itself spontaneously. In some, it may require a surgical procedure later in life which can be curative. At the other extreme, some babies will die within hours or days if they do not have emergency medical and surgical treatment. Overall, about 50% of babies born with congenital heart disease will not survive into adult life without surgery. Thus, a heart abnormality can have far more serious consequences than most other physical problems that may be present at birth.

6 Children who are born with heart disease need and receive care from many different nurses and doctors at any one time and over the years.

7 Cardiologists and surgeons have a significant role in the care of children who have congenital heart disease. Many other clinicians and healthcare workers are also likely to be involved in a hospital care episode, not least nurses, anaesthetists, perfusionists (technicians who run the heart-lung bypass machine), pharmacists and physiotherapists. If the child dies, a pathologist is also likely to be directly involved.

8 For a few children, a heart problem can be diagnosed, treated, and indeed cured, in one episode of care in hospital.

9 For many children, the care process is complicated and protracted: it may involve an initial diagnosis followed by a series of surgical procedures and other treatment over a period of years. An operation in early infancy may only be an initial operation in a plan of treatment.

10 Children with heart abnormalities who need heart surgery may have either `closed-' or `open-' heart surgery. A `closed' operation means that the heart or major arteries are operated on whilst the heart is still beating. An `open-' heart operation means that the heart is stopped whilst the surgery takes place, and the blood flow to the child's vital organs is supported by a heart-lung bypass machine.

11 There is a wide spectrum of heart abnormalities. Even though diagnostic labels are given to individual children, no two children's hearts are identical. Thus the best operative management is not always clear, and normally the relevant clinicians would come together to discuss and agree a plan of treatment for each child. There may be several options both for the type of surgery and for its timing.

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Footnotes

[4] Dickinson DF, Arnold R, Wilkinson JL. `Congenital Heart Disease among 160, 480 Liveborn Children in Liverpool 1960 to 1969. Implications for Surgical Treatment'. `British Heart Journal' July 1981; 46(1): 55-62