The courage of Hannah Jones, the 13-year-old girl who has chosen to die rather than undergo a heart transplant, inspired national sympathy this week. But it emerged yesterday that doctors fear the positive image of the surgery may have been hugely damaged by coverage of her story.

They believe that the case, which has opened a debate over whether a child is competent to take decisions of such magnitude, may have created the impression that transplant survivors do not enjoy a good quality of life and may also have distorted the risk of death during surgery.

Doctors are further worried that parents may be dissuaded from opting for organ donation, although they acknowledge that this was never the family’s intention.

Hannah’s parents never sought to publicise her decision and it came to light only when they spoke to a national newspaper about the problems of getting travel insurance to take her to a Disney resort.

Hannah, who has spent much of her life in hospital, declined a transplant, in agreement with her parents. The operation would have taken place this year at Great Ormond Street Hospital for Children, London. Her local hospital in Hereford accused her parents, Kirsty and Andrew, of preventing their daughter’s treatment and threatened to send police to remove Hannah forcibly from her home.

After speaking to a child protection officer, Hannah won her battle to die at home. “I just decided that there were too many risks and, even if I took them, there might be a bad outcome afterwards,” she said. “There is a chance that I may be OK and there is also a chance that I may not be as well as I could be, but I am taking that chance.”

Mike Burch, paediatric cardiologist and director of cardiothoracic transplantation at Great Ormond Street, said that the furore may have left the impression that doctors would consider doing transplants against the wishes of families.

He also said that Hannah may have unintentionally “glamorised” transplant refusal, making herself an involuntary “poster girl” for choosing such a path. “I think it has been hugely damaging for transplant patients and for those coming in for transplant assessment,” Dr Burch said. “What worries me is that people might think [the hospital] would take a child and do a transplant against their wishes. We would never do that.

“A lot of doctors and nurses felt upset [by this suggestion]. I would be worried about some of the patients coming in frightened that Great Ormond Street doctors would get a court order [to operate on them].”

If the family was not co-operative the operation would have far less chance of success, Dr Burch said, because patients had to work with doctors in taking anti-rejection drugs. It would also be regarded as a waste of a precious organ to transplant it into a resistant patient. He said that Great Ormond Street had never gone to court to force a heart transplant.

Dr Burch said that it was also important to remember that for most people, though there were risks both during and after heart transplant surgery, there was a 95 per cent recovery rate. In the 1980s a patient could expect 10 extra years before facing death or retransplant, whereas now it would be 15 to 20 years at least. “They go to school normally, do normal activities, go on to university, have gap years,” he said. “They don’t need particularly frequent clinic checks. The quality of life is good.”

Hannah’s case has also raised questions about whether a child of her age should be allowed to make life-and-death decisions. There is still doubt over whether children grasp how quickly science can advance.

Dr Burch added that if Hannah got to 15 or 16 and changed her mind, it might be harder for her to back down from her decision, because it had been so widely publicised.

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