Hannah Jones

[Rasputin]

She holds you with that steady gaze. She looks through and beyond you because her years of suffering have given her the ability to weigh things up with the imperturbable calm of the realist. Her mind is made up, as yours cannot be, because she is about to persuade you that it is not in her interests to be put through yet another operation. She is suffering from heart disease brought on by treatment for childhood leukaemia and knows her time is limited. She is not asking for the "right to die", as the misapprehension is, but for the right to live as she wants – at home with her parents and her siblings.

You are there to act in her best interests. Doctors say that means removing her exhausted and damaged heart and giving her a new one. But she is a brave and well-informed young girl and she has decided the procedure is too risky. It might kill her. At best, it might give her a slightly extended life of endless medication and more scares.

Grotesque as it sounds to the non-medical world – and maybe even to you – this long-suffering, terminally ill girl has been threatened with being removed by court order from the custody of her parents and forced to have the operation. Her desperate parents have asked you to listen to her, and she begins with heart-breaking equanimity to explain to you the reality of her situation as she sees it. She tells you she has had enough and wants her illness to take its natural course.

"I put my point straight across," Hannah said yesterday of the momentous hour-long meeting with the officer, held in the bedroom of her five-bedroom Georgian cottage just outside the village of Marden, near Hereford. "I said I have been in hospital too much and I associate it with bad memories. I have had too much trauma. I said: I don't want this thing. I was shocked to hear that they could do such a thing [take her from home].

"I'm not a normal 13-year-old. I'm a deep thinker. I've had to be, with my illness. It's hard, at 13, to know I'm going to die, but I also know what's best for me."

Her self-advocacy ended all threats that she might be removed against her will to wait for a new heart to become available. The High Court proceedings were dropped. This may be a girl of only 13 who talks to her friends on MSN, loves reading Enid Blyton and longs to go to Disneyland – if only she could get the insurance – but she has the maturity of a child made wise by illness. According to her father, she made the decision "on her own, a bit like a grown-up really, even though she was only 12 at the time". You wonder, he says, "how she was coping, what her mind was thinking at the time. I have great admiration for her".

Medical intervention for as long as she can remember has given Hannah the right to be heard, even the ability and the competence to make decisions about her limited future. "I know there is a big waiting list for heart transplants," she said yesterday, "and I am happy to save someone else's life. I just decided that there were too many risks and, even if I took them, there might be a bad outcome afterwards. There is a chance that I may be OK and there is a chance that I may not be as well as I could be, but I am taking that chance."

There can't be many more desperate situations in which everyone has acted for the best even though they may be in conflict. Here is the cast: the perfect patient, the loving family, the good doctors, the diligent locum, the righteous health care trust, the listening child protection officer and the right-thinking lawyers – who decided on Monday that the threatened court action should be lifted.

In July, Andrew Jones, an auditor, and his wife ***sty were told that their eldest daughter had a maximum of six months to live. It is difficult to imagine the turmoil they must have gone through to support Hannah's decision to have no more operations. For their own sake, and that of their three younger children – Oliver, 11, with whom she likes to play ball outside, Lucy, 10, and four-year-old Phoebe – if they had thought there was the remotest chance that those six months could be meaningfully extended by a heart transplant, they would have seized it.

But ***sty Jones was once an intensive care nursing sister and she knows that the heart transplant would probably offer no more than a temporary respite. "Yes, I want her to live and yes, I want a cure," she says. "But this is not a cure. I've worked on a cardiac transplant unit and I've seen good and bad outcomes. If she had the transplant as a child it's more likely she would need another one in four or five years." Moreover, doctors had said the drugs to prevent Hannah's body rejecting the new heart could cause a recurrence of the leukaemia. Against such odds, what parent could put a child through a possibly life-threatening, possibly life-extending but ultimately pointless procedure?

"It was very emotional trying to reach the sort of decision you would never wish on your worst enemy," says Andrew Jones. "We were as low as it's possible to get but I just didn't feel able to influence her. My wife and I agreed that whatever Hannah wanted, we would support her."

What complicated an agonising story is the heavy-handedness of the authorities. A locum doctor at the hospital reported the case to the child protection unit after Hannah had put her arguments against further treatment – successfully – to doctors at Birmingham Children's Hospital (where she had a pacemaker fitted this year) and Great Ormond Street (where the transplant would have been performed).

The doctor acted "appropriately" in voicing his concerns. Who could blame him for raising the alarm that someone so young had decided to reject the best intervention his profession could offer? What if she had been coerced or was seriously depressed? The GP was damned if he did and damned if he didn't.

As a result of his punctiliousness, out of the blue on a Friday evening, the Joneses received a shocking phone call. Hereford County Hospital was applying for a High Court order to remove Hannah from the family home on the grounds that they were "preventing her treatment". Her disbelieving father said: "We were shell-shocked, really. They were ready to take her that night."

"It was just this one locom doctor who didn't know Hannah," recalls ***sty. "He was saying, 'Bring her into hospital now or I shall send the police and an ambulance and a nurse to come and fetch her. It was terribly frightening. It was in the evening and you can't get a solicitor and the social workers have disappeared for the weekend, and we have to tell the three young children they have to be good, and be quiet, and Hannah might cry, she might not want to go. But we have to let her go if they do come, because otherwise we wouldn't be allowed to visit her in hospital."

Their last resort was to let Hannah explain her decision. After the meeting with the child protection officer, whom her mother described as "fabulous', Hannah's views were conveyed to barristers at the High Court and they decided to throw the order out – leaving Hannah free to have a "normal" family life, for as long as it lasts.

[Rasputin]

Hannah Jones' heart transplant refusal might end in drama

Thirteen-year-old Hannah Jones, diagnosed with leukemia since she was 4, and later with cardiomyopathy, finds herself in a very critical time, because she is not willing to accept a heart transplant operation urgently needed to prolonge her life.

Hospital officials made their duty to announce the child's parents that making sure both the child in cause and his/her parents have a clear understanding of the consequences of any medical decision, represents a medical standard procedure.

Hannah declared she would rather spend her last moments at home with her family, than at the hospital.

"I've been in hospital too much I've had too much trauma," Hannah told Sky News on Tuesday.

[Rasputin]

Doctors fear Hannah Jones case may blight heart swaps

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, ***sty 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.