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-a-half 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 we know parents who agree to donate their child’s organs gain great comfort and pride from knowing their child has saved the lives of other people, often young patients.
“We urge all parents to talk about organ donation, and not just for themselves but all members of the family, and what they would want if the time comes.
“Children can save lives too and there are young patients relying on a child to save their life.”
Anna Hadley, aged 14, from Worcester, has been waiting for a heart transplant for more than a year.
She has restrictive cardiomyopathy, a rare heart condition in which it cannot pump properly, and which was discovered after she collapsed in 2016, and again the following year.
It has left her unable to do many of things she loves – and facing a life-saving heart transplant.
Anna said: “I am an extremely sporty person but because of my condition I have had to restrict myself. My heart can’t cope. I’ve had to stop doing some of the things I love to do. I’d just got into the county hockey squad when I was diagnosed, so not being able to carry on with that has been the most disappointing thing.
“When I first found out about my condition I was extremely frightened. We used to be on edge waiting for a call and every time the phone rang we thought that was it.
“We’ve now got used to it and I don’t think about it too much, we’ll cross that bridge when we come to it. A transplant would mean everything to me. I could go back to enjoying everyday life and doing everything I really like.
“I would feel really blessed and incredibly thankful to the donor and the family that donated to me.
“It’s important to raise awareness of donation as people don’t really think about kids that need donors. Children need donors, so every family should have that conversation.”
Her father Andy, a salesman, added: “We were absolutely devastated to get the diagnosis – there have been some very hard times and difficult conversations.
“But we keep positive. We’re the lucky ones, we get to go home from the hospital and be together and live our lives as normally as possible. We’re making the most of life.
“We would ask everyone to talk about organ donation – parents, children, everyone – and let your loved ones know what you’d want.”
Minister for Care, Caroline Dinenage said: “Children in urgent need of a new heart wait over twice as long as adults. What an agonising time that must be for their parents.
“There are dozens of boys and girls desperately waiting for the right size heart. They are all someone’s child and all deserve a chance at life, and I will ensure we do all we can to encourage more donations and save more young lives.”
Under a change to the law, from next year, adults in England will be considered potential donors unless they choose to opt out or are excluded. However, the legislation will not apply to children.
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