Lancaster mum wins legal fight for son's kidney transplant

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WilliamImage source, FAMILY HANDOUT
Image caption,

William has been at the centre of a treatment dispute with Royal Manchester Children's Hospital

A mother has won a legal battle to ensure her teenage son has the right to a potentially life-saving transplant.

Ami McLennan, from Lancaster, had argued a transplant was 17-year-old William's only chance and without it he would have just 12 months to live.

Royal Manchester Children's Hospital had claimed his autism would make the operation and aftercare too risky.

But a judge has ruled the teenager should be given the chance of having the operation.

Presiding over the case in the Court of Protection, sitting in Liverpool, Mrs Justice Emma Arbuthnot said she had put herself in "William's shoes".

"I have no doubt he wants to live a life with the support of his family and that he wants to continue playing 'kerbie' long into the future," she said.

She added that even though there were many risks involved in a transplant it was the only way of potentially securing William's long-term survival.

Image source, Family handout
Image caption,

Ami McLennan asked for help to find a living donor for her son

Her decision came after a four-day hearing which heard evidence from clinicians involved in William's care as well as experts representing both the hospital and his family.

The court heard how William, who has autism, ADHD and learning disabilities, was not deemed to have the capacity to make such a complex decision about his future.

But his mother said they should never have had "to fight this" but added "now we have got a chance".

"William's situation is critical. It could mean the difference between life and death," she said.

"All we have ever wanted is for him to be added to the transplant list and treatment continued until a donor is found."

'Enjoys life'

She believes, with the right care, her son could cope with the complexity of such a procedure, as well as having various lines for dialysis and other treatment post operation if needed.

The hospital argued the only way of ensuring a successful transplant would be to put William under sedation and ventilation for an extended period of time, which could cause huge psychological trauma.

Despite these risks, William, a keen golfer, gave evidence to the judge in a private hearing in which he said he wanted the operation and that it would "make him better".

He told Justice Arbuthnot that while he was scared about the operation he wanted the chance to live longer.

He told her how he loved his jobs at his local respite centre, making tea, mopping, making picture frames and laminating documents.

The judge told the court: "It is very clear he enjoys the life he leads, playing games and doing odd jobs, going to school and being at home with his family."

Image caption,

Kim McGowan believes William should have the same chance as any other child

The health trust had argued that, post operation, William would be unable to cope with the number of tubes in his body - there could be five in total after the operation - and there was a risk he could pull them out and cause damage to his new kidney.

Acting for Ms McLennan, Victoria Butler Cole disputed that saying that with the right care and reasonable adjustments - such as having relatives or a carer present to stroke his hand and calm him - he had proven that he could manage such complex treatment.

Since BBC News supported his mother to lift reporting restrictions, several altruistic donors have come forward, willing to donate one of their kidneys if they are found to be a match.

Kim McGowan is among them. Her son, also called William, is autistic with ADHD and she believes strongly that William should have the same chance as any other child.

She said: "I think when you're a parent of a child with any additional need you will be very familiar with the feeling of having to fight. [Their] fight is unimaginable and I will do anything, anything I can do to help."

Ms Toli Onon, joint medical director for Manchester University NHS Foundation Trust, said: "We welcome the clarity which this decision brings for William, his family and our clinicians.

"The trust asked the Court of Protection to make today's judgment because of how unusual, complex and risky the situation is.

"William, his family and our staff have all worked really hard together to support his dialysis; and we will now be liaising with William and his family regarding how best to progress his treatment."

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