A life on hold waiting for a donor

Published on Sunday 28 October 2007 01:19

JUST like any other toddler, Aimee Gallon is enjoying each day to the full, playing with her toys and her friends.

Although everything appears normal, her parents have endured an agonising wait for a life-saving liver transplant for the last eight months.

When Aimee was born in December 2005, she appeared bright and healthy and her parents, Nicola Hughan, 25, and Steven Gallon, 34, were overjoyed.

But her health quickly deteriorated and she underwent surgery at just six weeks of age after doctors diagnosed her with a rare liver disease, biliary atresia.

The operation helped her liver to function better, but it was not a full success and in February doctors put her on a waiting list for a transplant - the only way to save her life.

Today, as the Scottish National Party debates organ transplantation at its national conference in Aviemore, her mother has made a heartfelt plea for a change in the law to presumed consent, which could save the life of Aimee and up to 500 patients a year who die waiting for a transplant.

She also backed Scotland on Sunday's organ donation campaign and called on the Government to change the law to an opt-out system, where everyone is automatically an organ donor unless they object in their lifetime. Experts say this could increase the number of organs for donation and cut waiting lists for transplants.

She said: "There are a lot of people out there who would love to donate organs but have not let their relations know or have not put their names on the list. There's no hassle involved because people can opt out if they want."

Hughan admitted their lives have been on hold since the birth of Aimee.

She said: "We are always worried about catching infections, such as colds and sickness bugs. We had to keep her away from normal baby groups because we were so concerned.

"We are dying for her to have her transplant so we can take her somewhere nice and start getting back to normality again. Life being on hold is the hardest part."

Biliary atresia affects around 80 babies in the UK each year. It causes the bile ducts of the liver to become progressively blocked through an inflammatory process, which means bile builds up in the liver and begins to poison it. It is not clear how or why this occurs.

For Aimee, a transplant is her only chance of survival, but if it is successful, she can go on to have a good quality of life.

Meanwhile day-to-day life is difficult for her family.

Aimee needs fed up to eight times through the night with milk that contains extra nutrients.

She will undergo her transplant at King's College Hospital, London, which is a specialist centre. Hughan added: "At one point we were told she was quite high on the list, so we had a case packed, but nothing has come of it. You just don't know when a liver will become available."

Catherine Arkley, chief executive of the Children's Liver Disease Foundation, said the number of children waiting for a liver transplant is growing. She said: "The current average waiting time for a liver for a child is 76 days. Sadly, children are dying on the waiting list due to a shortage of donor organs."

Last week Cabinet Secretary for Health Nicola Sturgeon said her personal view had changed in favour of presumed consent. Scotland's chief medical officer Dr Harry Burns has also backed an opt-out system.