The NHS Organ Donor Register is a confidential record of people’s choices whether to be considered a potential organ donor, or not, when they die.
The UK Transplant Waiting List is a similarly confidential database of everyone in the UK currently waiting for the opportunity to receive an organ from a deceased donor. There are about 7,730 people on the active waiting list at this moment, almost 260 children, although the list is dynamic, changing rapidly according to individual circumstances.
It’s not a simple queue, where the first person in line receives the next available organ they need. It is a complex matching system, using many factors to decide which person on the list has the maximum opportunity for a succesful transplant, which new host will provide the best opportunity for longevity for the precious gift of the donated organ.
Blood and tissue type must be compatible, size and age of donor and potential recipient will be considered, even how far the organ will have to be transported and how long it will be before it can be safely transplanted and become a life-giving part of another person.
When a patient is considered to be in need of a transplant, they are carefully assessed to see if they are strong enough, physically and mentally, to go through the demands of the operation and recovery. If the wait is too long, health can deteriorate too much and the patient be considered too unwell to endure the process. Last year over 415 people died while waiting for a transplant.
That’s some of the facts. The real lives and emotions are another thing. For the purpose of sensitive, accurate matching the list is anonymous. Those who wait for the phone call are not.
Harry is our friend.
We met him with his mum and dad, Clare and Simon, and Harry’s brother, Sam, at the Transplant Games. Today, their bags are packed again, and they watch the clock as health weakens, daring to hope that the light of kindness can shine from the darkest hours of others.
We are grateful for permission to share Harry’s story, in Clare’s own words:
“This is Harry.
He is thirteen and a half years old and became a bit of a celebrity when he ran laps of the BBC Breakfast sofa aged 4.
Harry was born with the liver disease Biliary Atresia, which led to him needing a transplant just before his 1st birthday. Harry then needed another transplant (donated from dad Simon as a living donor) when he was 4.
Since then, Harry has been unstoppable. He has summited Cadair Idris, Ben Nevis & Snowdon. He has won many medals at The British Transplant Games as part of the Birmingham Children’s Hospital and Charity team. Harry loves cycling, swimming, Minecraft and Lego.
But then he became poorly. This year has not been kind. Harry has spent around 18 weeks in hospital and now needs a 3rd transplant. Live donation is not an option. So the bags are packed and we await the call. We know that he will not get better without a new liver.
Although everyone is now a potential donor, the final decision is made by Next of Kin. Many say no.
More lives could be saved by people sharing their wishes. Sign up to the register and tell your loved ones. Thank you…”