Kevin and Linda Poynter said they would never have allowed the operation by Britain's leading heart transplant surgeon to go ahead had they had an inkling of what the outcome might be. They said they would have preferred to let their 16-month-old son Matthew die in peace, and only agreed to the transplant after being put under pressure by the medical team.
But Sir Maurice Drake, giving judgment in the High Court, rejected the claim that the doctors had been too zealous or had underplayed the risks. He found that the couple had not asked directly about the risk of brain damage and that it would have been unlikely to have altered their decision if they had. Faced with the prospect of an 80 per cent chance of survival for their son through surgery, or certain death, most other parents faced with the same situation would also have consented.
The outcome means Mr and Mrs Poynter, of Biggleswade, Bedfordshire, who were legally aided, must continuing caring for Matthew, now aged 10, without financial help. He is profoundly brain damaged and needs round-the-clock care.
The couple are vegetarians and were resistant to the idea of a transplant. Mr Poynter, an osteopath, told the court: "The heart is not just a pump, it is part of the person, part of the mind, body and soul".
Matthew, who was born in August 1986, developed a heart condition in which the left ventricle became enlarged. He was seen at the local hospital in Stevenage by a cardiologist from Harefield who referred the baby to the heart transplant centre. According to their solicitor, Tom Osborne, the couple were not opposed to orthodox medicine and gave Matthew the drugs he was prescribed. But they were against a transplant.
"However, the doctors at Harefield persuaded them that they had no rational case for opposing it. They were told that either the boy would die in a few days or he would live for two or three years a near normal life. They felt they had no choice."
The transplant was a success and the new heart still functions 10 years later. Matthew was the 30th child in the country to receive a heart transplant and one of the youngest. But he was so ill at the time of the operation that he suffered a cardiac arrest when given the anaesthetic and his heart was kept going with massage for 30 minutes until he could be attached to a heart-bypass machine. It is believed the brain damage occurred during this period.
He is the only one of the 177 children who have had heart transplants at Harefield who has suffered brain damage.
Sir Magdi told the court the risk was so small - less than 1 per cent - that he would not tell parents about it unless specifically asked.
Transplant surgeons yesterday agreed it was impractical, and could be unwise, to tell patients of every conceivable risk. Bob Johnson, kidney surgeon and chairman of the British Transplant Society, said: "We tell patients about the classical risks - of dying, of the organ being rejected, of side-effects of the immuno-suppressant drugs. But you can't go through every remote risk."
JAfterwards, the couple's solicitor said that the pounds 250,000 cost of the legal battle against Hillingdon Health Authority would have been better spent on healthcare for children like Matthew than in forcing the authority to respect parents views.
Brooding pioneer at the heart of Britain's transplant programme
For 17 years Professor Sir Magdi Yacoub has led the heart transplant programme in Britain. With his huge domed forehead and dark, brooding eyes peering out above a theatre mask he has become one of medicine's few, instantly recognisable, faces, writes Jeremy Laurance.
He operated on his first patient at Harefield hospital in January 1980, a few months after Sir Terence English had performed the first successful transplant in the United Kingdom at Papworth hospital, Cambridgeshire.
Although neither man courted publicity, the patrician Sir Terence, with his fondness for country walks, contrasted with the missionary style of Sir Magdi who seemed truly fulfilled only in the operating theatre.
In the early days, Sir Magdi's relentless demands on staff and resources provoked criticism from those who saw other specialties depleted. Now heart transplants are an accepted part of the surgical repertoire. More than 300 operations a year are performed in Britain and Harefield is among the world's leading centres. Last year, Harefield completed its 2,000th heart transplant. Half the patients are still alive. Today, a new patient has a 60 per cent chance of surviving 10 years. Britain's longest survivor, Derrick Morris, aged 65, was Sir Magdi's third patient and has lived for 16 years since the operation.
Sir Magdi, 60, has given no hint that he is thinking of retiring. He still keeps a punishing schedule, working long hours, nights and weekends.