Girl, 13, wins right to refuse heart transplant

A terminally-ill 13-year-old girl has persuaded a hospital to abandon legal action that could have forced her to have a potentially life-saving heart transplant against her will.

Hannah Jones, who suffers from a rare form of leukaemia, told doctors that she believed the treatment was too risky and that she would prefer to enjoy her remaining days in the company of family and friends. But in complex right-to-die case, her local hospital began High Court proceedings to temporarily remove her from her parents' custody to allow the transplant to go ahead.

Hannah was required to plead her case to a child protection officer, who persuaded the hospital to back down.

Last night, her father Andrew, an auditor, said: "I don't know exactly what Hannah said but it must have been powerful enough to convince some very high-up people that she was right. It is an incredible thing for a young person who has been through such a lot to have the bravery to stand up for her rights. We're so very proud of our little girl." The family has now received a letter from the hospital insisting that it always puts a patient's "best interests" first, but which stops short of an apology. Hannah, who was diagnosed with leukaemia at the age of five, was given a high-strength drug to kill off the infection that also caused a hole to develop in her heart. Her family had to decide whether to continue the treatment – which would have wiped out the cancer but possibly further damaged her heart – or stop and hope that the amount administered was sufficient.

They chose the latter, and, so far, the leukaemia has not returned. But Hannah has been left with severe heart damage that requires treatment with a combination of drugs and a special pacemaker. After being told the only solution was a transplant, Hannah decided against it because there was a strong chance she would not survive the procedure and, if she did, the leukaemia could return. The new heart would also last only 10 years at best and she would need constant drug treatment. In the end she decided to return home to Marden near Hereford and her brothers and sisters – Oliver, 11, Lucy, 10, and four-year-old Phoebe, under the expert care of her mother, a specialist nurse.

But the family later received a telephone call from the child protection officer at Hereford Hospital warning they would apply for a High Court order to forcibly remove Hannah because her parents were "preventing her treatment". The next day the officer arrived at their home and interviewed Hannah in her bedroom. After the meeting Hannah's views were conveyed to barristers at the High Court who decided to abandon the case.

Mr Jones, who praised the doctors treating her, described the hospital's action as "outrageous". He said: "Hannah had been through enough already and to have the added stress of a possible court hearing or being forcibly taken into hospital is disgraceful."

Hannah can now only move around briefly before becoming short of breath. She was too weak to speak about the case yesterday, but a spokesman for Hereford Hospital said the decision to consider legal action was ultimately the responsibility of the primary care trust.

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