Hospital ‘turned down five potential donors’
THE distraught mother of a little boy who will die without a liver transplant has said doctors have turned down five potential donors.
Charlie Lynch is eight years old but has a condition which means he is in the late stages of liver failure.
Family and friends were not matches and had to be ruled out as donors but mum Helen, from Pontypridd, claims staff at King’s College Hospital in London suggested she launch a social media campaign asking strangers to give a slice of their liver.
Incredibly 30 people came forward. Of those, five were the right blood type and had received promising results from preliminary tests.
But doctors told Helen to stop her campaign, saying they could not consider stranger donors following previous problems with them on top of a lack of resources.
They insisted assessing each candidate involved “extensive” work by a team of specialists under “incredible strain”.
Instead, the hospital ruled Charlie should remain on the transplant list and hope for a suitable donor that way.
Desperate Helen said she felt she has no choice but to speak out in a bid to get medics to change their minds.
Charlie’s heartbroken mother Helen told the Sunday Mirror: “This is my son’s life. It’s as if they don’t want to save him.”
She said: “My little boy is dying. I’ve watched his condition get worse and worse and it’s heartbreaking.
“To know there are people who, out of the kindness of their hearts, are prepared to help Charlie is amazing. And yet King’s won’t help us. What I don’t get is that there’s a shortage of organ donors in this country and in this case we’ve got them queuing up.”
After being questioned by the Sunday Mirror, the hospital admitted it has carried out a “small number” of the transplant Charlie’s mum wants.
Helen, 28, said: “It doesn’t make sense. I appeal to the hospital to change its mind for my son’s sake.”
The law has allowed live organ donations since The Human Tissue Act was passed in 2006. The Human Tissue Authority regulates live donations of organs, ensuring rigorous ethical standards are followed.
These include making sure potential living donors are psychologically prepared and that no money or coercion is involved. Guidelines for living liver donations, which are 10 times as risky as kidney donations, were first formulated in 2012.
A live donor gives 30% of their liver to a recipient. The donor’s liver regenerates to its original size within a few months.
Since the guidelines came in to force 17 transplants have taken place from unrelated donors who knew who the recipient of the organ would be.
Of these, five involved children under 16.
Four completely “altruistic” transplants have taken place, where the donor did not know who the recipient would be. Of these, three were children under 16.
Charlie, who has an elder brother Daniel aged 10, was diagnosed with biliary atresia just days after his birth.
The condition, which affects just one in 16,000 infants, prevents bile from draining out of the liver, effectively poisoning it. Almost all children with the disease need a transplant.
Charlie’s father, from whom Helen is estranged, was tested as a possible donor and found to be a perfect match. But agonisingly for Charlie and Helen he was unable to donate.
At one point Charlie was taken off the transplant list because his life was not in immediate danger.
But his condition has deteriorated. His skin is yellow with jaundice and his stomach swells with fluid which must be drained away every 10 days in hospital. Because his body is unable to absorb vitamins, he is showing early signs of bone-weakening condition rickets and he has vision problems.
His spleen has swollen to three times its normal size.
Helen was forced to give up work as a carer to cope with Charlie’s regular hospital admissions.
He was put back on the transplant list in November 2014. Doctors told Helen to expect to wait six to 12 months. In that time Charlie has had two calls about possible donors.
The first was in February 2015. Charlie was prepared for surgery only for the family to be told the liver was not a match. The second, in February this year, did not work out either.
Helen said: “We both cried. I told him hopefully the next one would be okay.”
The proud mum revealed Charlie has coped brilliantly with his condition. She said: “He’s a typical football-mad little boy who likes to be outside.”
She added: “We don’t know how long Charlie has left. The one thing I want is for him is a normal life.”
King’s College NHS Foundation Trust said: “The use of altruistic donors is both complex and sensitive.
“At a time when resources are under incredible strain, the Trust focuses on offering transplantation to patients from family members or friends who have been successfully assessed and are suitable for donation.”
A spokesman for the British Transplant Association said: “The response to public appeals for living donors can present significant challenges for transplant centres.
“It is not feasible for transplant units to assess multiple donors for a single recipient simultaneously. All transplant teams also have a responsibility to balance their resources to enable as many patients as possible to have fair access to transplant opportunities.”
But Sarah Jones, from charity Live Life Get Life, said: “I’m a fan of all organ donations from strangers. I’ve had a kidney transplant and know I may need another altruistic kidney.
“The bottom line is we need more awareness for people to share their wishes about donating organs.”