A terminally-ill teenager who won the legal right to die at home said she was “really shocked” when health bosses tried to force her to have a heart transplant against her wishes.
Officials used a court order to try to take Hannah Jones, 13, from her family and make her have surgery. She had been warned that the transplant might result in death. But after Hannah insisted to child protection officers that she did not want the operation, High Court proceedings were abandoned and she will now spend her remaining time at home.
Explaining her decision, the former leukaemia sufferer, from Marden near Hereford, said she had suffered “too much trauma associated with hospitals”.
“I just decided that there were too many risks and even if I took it, there might be a bad outcome afterwards. There’s a chance I might be OK and there’s a chance I might not be as well as I could be but I’m willing to take a chance,” she said.
Her mother Kirsty, 42, a former intensive care hospital nurse, said there was a “chain of unfortunate events” which nearly resulted in her daughter being dragged from the family home.
She said a locum doctor, who had not dealt with Hannah before, telephoned late on a Friday night and said if they did not bring her into hospital straightaway, police and an ambulance would come to get her. But the family still refused. “It was terribly frightening,” she said.
But she said a “fabulous” child protection officer came to the house to help.
“She could see what Hannah wanted and she went to the barristers’ chambers on the Monday morning and put Hannah’s side across, and that ended the proceedings.”
Hannah said: “I was shocked, really, to hear that they could do such a thing but they didn’t do it. I was really shocked.”
The teenager has a hole in her heart - meaning it can pump only a fraction of its normal capacity. The damage was caused by treatment for leukaemia diagnosed when she was four. She was previously warned that she had only six months to live and that the only potential long-term solution was a heart transplant.
Her mother said she and her husband Andrew, 43, supported Hannah’s choice and it was “not a decision to be taken lightly. She’s absolutely fabulous. She’s so grown-up and so good.”
Mrs Jones said she hoped coverage of Hannah’s story would help them to have a travel insurance company cover a family trip to Disney World in Florida next month, along with siblings Oliver, 11, Lucy, 10, and four year-old Phoebe.
“It’s really Hannah’s most-wanted wish that she should go,” she said, “just to get away and have a nice holiday and forget about everything at home.”
In a letter to the Jones family, Herefordshire Primary Care Trust chief executive Chris Bull said the trust had concluded that it was “not appropriate” to seek a court order requiring Hannah to be admitted to hospital.
He added that Hannah appeared to “understand the serious nature of her condition” and that she “demonstrated awareness that she could die”.
In a statement, the trust said: “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.”