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Terminally Ill Girl Wins Battle To Refuse Heart Op And To Die Peacefully At Home

By Michelle Duffy     Nov 11, 2008 in Health
A terminally ill girl has won the right to refuse treatment after a hospital ended its bid to force her to have a heart transplant
There are some children in this world who are beyond their short years. They think deeper than the adults who surround them. They show compassion where the rest of us look away. They are capable of making decisions which many parents would rather hide from. This week, we learn of yet another youngster who puts millions of adults in her shadow. She has had to make the ultimate decision about life and death and her own future.
Many young people have to go through difficult and sometimes painful conversations with strangers - these strangers who are on their side, have to then in turn speak on behalf of these children to higher authorities, even if it means going against red tape, political backlash and even the press. Yet one child protection officer has done just that this week and spoke up for a teenager who has, in sound mind, made a decision about her own life.
This week, Herefordshire Primary Care Trust (PCT) made the radical decision of dropping a high profile High Court case when a child protection officer officially said that 13 year old Hannah Jones is adamant that she does not want to go through any more heart surgery. She has had enough. She wants to put an end to the suffering, trauma and stress her condition has caused herself and her family.
Little blonde haired, pretty Hannah who sat this week in her little pink bedroom with her mother by her side, said she wanted to "die with dignity." Both her parents support their brave daughter fully. The decision was made, but only after one particular event which almost tore the family apart.
The PCT's actions earlier this year had both shocked and disturbed Hannah's parents when it was decided that Hannah would be forced to have the heart surgery and be taken away from her devoted parents. The officer had said that the Hereford County Hospital's child protection team had said that if they did not bring their daughter in to hospital to have the operation, they would remove her from her family.
Hannah has learned over the years that she has a hole in her heart. A heart that is only working 10% of his full capacity. She had taken the advice of her doctors and after being offered a heart transplant in July last year, she decided not to go through with it after having a lifetime of surgery.
The PCT applied for the court order to get Hannah in for surgery earlier this year but she said she wanted to stay at home and go through no more.
Mr Jones, the child protection officer said,
"The threat that somebody could come and forcibly remove your daughter from you against her wishes, against our wishes, was quite upsetting really. We didn't get too involved in (Hannah's) decision. Hannah made that decision consciously on her own, a bit like a grown up, even though she was only 12 at the time and she has maintained that decision. How she coped with it, what her mind was thinking at the time, I've got great admiration for her in that and, as I said, we have to support her and her decision."
The 13 year old has a history of leukaemia on top of the fact that the drugs she has had to take since the age of five has weakened her heart further.
Speaking on behalf of the PCT, the consultant paediatrician told the BBC that it had been an "extremely complex case."
"No one can be forced to have a heart transplant. We understand that the child and the family's views in relation to care and treatment might change over time as the child's condition changes. Any individual has the right to change their mind at any time. When considering whether a child is able to make a decision we would consider the age and the maturity of the child as well as the views of the family and others as appropriate. A child has the right to change their mind and all professionals providing support to the child and the family have to be sensitive to that."
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