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Sunday, April 13, 2008

Mother needing transplant is refused dead daughter's kidney, despite girl's deathbed plea

With her mother desperately in need of a transplant, Laura Ashworth told family and friends she wanted to donate one of her kidneys.

So when the 21-year-old died after an asthma attack, it seemed that the tragedy would at least give Rachel Leake a chance of a healthy new life.

But because Laura had not begun the formal process of becoming a "living donor," the authorities refused to let her mother receive her organs. Instead they went to strangers at the top of the waiting list.

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Rachel Leake says her daughter Laura 'would be devastated that she was not able to help me'

"All I wanted to do was carry out her wishes," said 39-year-old Mrs Leake.

"She would have been so upset that she was not able to help her mum. Even the transplant coordinator was crying her eyes out. She really tried to get her bosses to change their minds but they would not budge."

Although the Human Tissue Authority has the power to allow "directed" donor requests of this kind, a blanket ban is in force while an ethical review of such transplants is carried out.

Despite an appeal to health ministers by the family's MP, Gerry Sutcliffe, Laura's kidneys went to a man in Sheffield and a man in London, while her liver was given to a 15-year-old girl.

Mrs Leake urgently needs another kidney and as a diabetic she could also have benefited from receiving her daughter's pancreas.

She had a kidney transplant five years ago, but the donated organ failed last year and she needs dialysis in hospital three times a week to stay alive.

She said: "I am angry, really angry. I am not finding comfort in the fact that she helped three people. I just want Laura."

A single mother working for a vehicle management company, Laura lived her mother, grandfather and two-year-old daughter Macie in a £400,000 farmhouse at Bierley, near Bradford.

She had always been asthmatic and used an inhaler. On March 31 she suffered a coughing fit and collapsed on the kitchen floor. Her mother called an ambulance, but by the time paramedics arrived her brain had been starved of oxygen.

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She was admitted to Bradford Royal Infirmary intensive care unit and put on a ventilator. She carried a donor card and transplant co-ordinators became involved when it became clear that she would not pull through.

Mrs Leake, a divorcee, said her 50-year-old sister Carole Spence was being formally registered as her living donor but the family hoped Laura's organs could have been used instead.

"My sister has had all the tests and we hope to go ahead with that but I wanted to save her all that."

The decision on whether Mrs Leake could have her daughter's kidney went all the way up to Adrian McNeil, chief executive of the Human Tissue Authority, but he refused it as a matter of 'policy'.

It is not known whether Laura's kidney would have definitely been suitable for a transplant operation.

Mr McNeil said all requests for "directed" organ donations were being turned down while a detailed ethical review was taking place.

He said the review, which is expected to make a decision some time this year, was ordered after several such donor requests in recent months.

Although the authority has the power to allow specific requests from donors, Mr McNeil said he personally refused permission for Mrs Leake to receive her daughter's kidney.

"The ethical issue is important as there is a waiting list for kidneys.

"There are people for whom getting a kidney is a matter of life and death. If we go down the path of saying you can direct who gets your kidney after death, what if that person is in not as urgent a need as someone on the top of the waiting list?"

The case comes three months after Gordon Brown unveiled controversial plans to let doctors remove organs from dead patients without prior consent.

Under the scheme, everyone in the UK will be presumed to be a willing organ donor unless he or she signs up to an "opt-out register" - or unless relatives object.

Mrs Leake, who expects to receive her sister's kidney in June or July, said: "The thing that hurts most is how Laura would feel. She would be devastated that she was not able to help me."

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