Matthew Poynter, 16 months old, was given a new heart at the hospital, in west London, by the surgeon Sir Magdi Yacoub in December 1987. It is still serving him well after 10 years but the brain damage he suffered rendered him "very very significantly disabled", said Simeon Maskrey QC, for his parents, Kevin and Linda Poynter, who are suing Hillingdon Health Authority for damages on their son's behalf.
"The staff at Harefield are dedicated, caring people who believe in heart transplants," Mr Maskrey told High Court judge Sir Maurice Drake. "They believed it was the duty of the parents to agree to a transplant. It was their view that it was utterly wrong to turn down the offer. They were faced with parents who, frustratingly from their point of view, were unprepared to take the opportunity. So one doesn't spell out the disadvantages if one is trying to persuade parents to take a course which one believes passionately is in the child's interests."
Mr and Mrs Poynter, from Biggleswade, Bedfordshire, who have two other children, say that if they had been told of the risks, they would have let Matthew die in peace rather than allow the operation to proceed.
The health authority argues that the risks of major brain damage are so small that doctors are under no legal duty to give a warning and that, in any event, a warning was given in Matthew's case.
Mr Maskrey told the judge: "It may seem to many in this court ... to be churlish to be critical of them ... but the lives of patients don't belong to the medical profession and we say it was not the function of the hospital or the staff to over-persuade or to minimise the risks or accentuate the benefits in order to get the consent they thought was necessary ... The parents were entitled to have an appropriate full explanation of what the benefits and the draw-backs were. The hospital was so keen or so frustrated with the parents that this was not done."
The parents did not see Sir Magdi until after the operation and at that time there was no formal counselling procedure in place, said Mr Maskrey.
Matthew, born in August 1986, developed a condition in which the left ventricle becomes enlarged and fails to contract properly. He held his own at first but became desperately ill after suffering colds and a chest infection.
His parents had a variety of objections to heart transplants, said Mr Maskrey. Mr Poynter "regarded the heart as more than a simple pump" and in 1987 transplant surgery for infants was in its early days.
Although they knew Matthew's life expectancy without the operation would be weeks or even days, Mr and Mrs Poynter went through agonies of indecision before giving consent. They alleged they were put under a "significant degree of pressure" by the hospital.
A donor heart arrived on 19 December 1987 and Matthew was taken to the operating theatre. His heart was kept going with massage for 30 minutes before he was attached to a by-pass pump. It was believed the brain damage occurred during this period. It was "perhaps ironic" that, from the cardiac point of view, the implant was successful.
Mr Poynter told the judge: "We lost the happy child we had before the operation, which turned him into a little boy who is very distressed and crying most of the time." He said he and his wife did not get any support from the hospital, before or after the operation, for their views or the way they felt. "Matthew was treated just as a person ready for transplant. It was a purely mechanical job, taking one heart out and putting another one in, disregarding anything human about it. The heart is not just a pump. It is part of the person, part of the mind, body and soul. Just to reduce it to something mechanical is missing the whole point about life."
The doctors expected them to agree to the transplant because "somehow we were failing as parents if we didn't. We were told Matthew had an excellent chance of pulling through and he would have two or three extra years. But for us they had to be quality years, otherwise it would not be worth it. We were after quality of life for Matthew. We didn't want ... extra time that wasn't quality time."
Mrs Poynter, who is expecting her fourth child, told the court of the reaction of one of the medical team, Richard Kirk, when she told him she did not want Matthew to have a transplant. She alleged he said: "If you continue saying that, we will have to consider whether or not to get a court order."
The judge had been told earlier by Mr Maskrey that the health authority was not intending to argue that a court order sanctioning the transplant could have or should have been sought.
Matthew is incapable of doing anything for himself and will need lifelong nursing care. He can move his head a little, can see bright lights and laugh and cry, but cannot communicate in any other way.
The judge is being asked to decide only the question of liability. Any damages found due will be assessed at a later date. The hearing continues today.Reuse content