As the NHS struggles for more child donors, desperate parents urge other families to sign up
FOR Shannon Heagren, the next phone call could save her son’s life. Grayson, aged just 17 months old, suffers from dilated cardiomyopathy, which means the walls of his heart are too thin to pump blood properly around his tiny body.
A new heart would give him a chance of life but the number of child donors is extremely low.
According to a report by the NHS, one child dies almost every month while waiting for a heart – so it desperately wants to increase child organ donations.
The report, released today to coincide with World Heart Day, highlights the fact that youngsters are waiting more than two-and-ahalf times longer than adults for urgent transplants.
For Grayson, it has become a race against time...
Shannon, 25, from Peterborough, said that when he was born, Grayson did not feed properly and his breathing sounded different to that of her three older children.
It was later discovered that he has a life threatening heart defect, so he was put on the waiting list for a donor organ in December.
Shannon said: “Organ donation is so important but it is hard to understand just how important it is until it touches your lives.
“I used to hear about it and think one day I’ll get round to signing the register but I never did.
“Since Grayson became ill, however, my whole life has been given a new perspective.
“Before, I would never have agreed for my children to be on the register, now all four of them are.
“I have my phone by my side at all times, hoping for that call.
“Hoping for a call that would give Grayson a chance at a life. A chance to grow up and go to school and spend time with his older brothers and sisters.
Grayson is a fighter and tries to stay strong but all the time that he is waiting has an impact on his other organs.
“Right now, we can only wait and hope that he gets the call and has a chance at a normal life that we dream of.”
The toddler’s case highlights the need to increase the number of child donors, especially for hearts which, unlike other organs, have to be size-matched.
The NHS report found of the 192 children in the UK currently waiting for an organ transplant one in four need a heart.
Experts have said doctors are often reluctant to raise the issue of becoming a donor among families who have children with life-limiting conditions.
And they say families also find it difficult to ask children if they want to be donors.
OVER the past 10 years the number of adult organ donors has reached record levels, doubling from approximately 800 in 2007-8 to 1,600 last year. Some of this has been put down to better publicity around donation. In contrast, the number of child donors has remained static, with fewer than 60 each year.
The NHS Blood and Transplant report found that the average waiting time on the urgent heart transplant list for adults is 30 days and for children in desperate need of a heart, the average waiting time is 79 days. Over the past 15 years 142 children have died while waiting.
Angie Scales, paediatric lead nurse for NHS Blood and Transplant, said: “For many children waiting for a heart transplant their only hope is that the parents of another child will say ‘yes’ to organ donation as their world is falling apart. “Losing a child is devastating but