Local people urged to sign on to organ donor register

Six month old Abel Storey was diagnosed with the rare liver condition Billiary Atresia when he was just weeks old.

Biliary Atresia is a condition in which inflammation develops within the bile ducts around the time of birth.

The inflammation can occur in any of the bile ducts both inside and outside the liver. This leads to bile duct damage, reducing the flow of bile, which causes scarring of the liver.

It affects one in every 16,700 infants in the United Kingdom each year.

At five weeks old, Abel went through a Kasai Procedure which involved removing his gallbladder and reattaching a bile duct to it to allow bile to get through to his gut.

Specialists had hoped that the procedure would allow Abel to regain good health and no longer have jaundice or major liver problems.

However, after a follow up appointment at Birmingham Children’s Hospital it was determined that the procedure was unsuccessful and Abel has now gone live on the organ transplant list.

His mum Lisa has urged people to ensure they are on the organ donor register and that their families know their wishes.

‘The demand for organs is on the rise, due to a mixture of an aging population, alcohol and obesity. But there are fewer transplants happening and there are reportedly three people dying every day while waiting on the list.’

‘I recently watched the BBC documentary, ‘Transplant Tales’, and was shocked to discover that 40 per cent of potential donor organs are refused by the family. This is one of the highest refusal rates in Europe. It’s not enough just to sign yourself up to the register. The NHS relies on your family’s consent to allow them to fulfil your wish’.

Lisa hopes that Abel will get a transplant ‘sooner rather than later’ and that he ‘receives his gift while he is still healthy and happy’.

The family now await a phone call telling them that a liver is available for their son.

Once the phone call comes, they have to leave the house within an hour to be taken by ambulance to Belfast International Airport. They will then be transferred to Birmingham via the Air Amublance.

‘A bag is sitting packed and our mobile phones have to be on and fully charged 24 hours a day, seven days a week’.

In preparation for the transplant, Lisa has to ensure that Abel does not catch any infections, even a common cold, as this could delay any surgery.

Abel also had to receive his MMR jab and Chickenpox vaccines six months early.

Lisa has also bravely put herself forward to see if she can become a live donor for Abel. Only one person can put themselves forward at a time and it can take up to 12 weeks before she will know if she is a match.

The process will involve three trips to Birmingham and include numerous health checks to see if Lisa is fit enough to undergo the surgery.

However, if a liver becomes available through organ donation prior to Lisa being deemed a suitable match or being prepared for surgery, Abel will receive that instead.

‘Abel is still thriving, but he may become very sick before a liver becomes available. We believe that a live donor may be the fastest way for him to get a transplant’.

While all of this is going on, Lisa and her family have been continuing in their efforts to raise money for Ward Six in Altnagelvin Hospital, Ward Eight in Birmingham Children’s Hospital and the community nursing team.

To sign the organ donation register go to www.organdonation.nhs.uk.