Parents are being urged to consider organ donation when their child dies, as new figures show the number donating has not changed in years.
While donations from adults have risen by a fifth since 2003/4, donations from children have remained static.
There are currently 177 children waiting for an organ transplant in the UK – and in 2017/18, 17 children died waiting for a transplant. In the same year, organs from 57 children resulted in 200 transplant operations, but this is barely up on the 55 child donors in 2013/14.
Health secretary Matt Hancock said it was “heartbreaking” that hundreds of ill children and babies are waiting for an organ right now.
[Read More: How to opt in or out of organ donation (and how to make sure your family follow your wishes)]
Around half of families who are approached about organ donation following the death of a child consent to their organs being used, but half do not.
Young children need organs that match their size, and it can be particularly difficult to find the right sized hearts for children and babies. While adults on the urgent heart transplant list typically wait 29 days for a new heart, children wait 70 days.
As a result of this desperate need, NHS Blood and Transplant has launched a new strategy to drive up the number of organ donations among under 18s.
Measures include more support for families and dedicated training on organ donation for clinical staff caring for paediatric patients.
There will also be closer work with coroners, who can refuse organ donation if they are investigating the death of a child. It’s hoped agreement could be reached where organ donation could take place while at the same time not compromising the work of the coroner.
“we must not shy away from this difficult, and potentially life-saving, conversation."”
- Matt Hancock
“I completely understand how difficult it is to even contemplate losing a child, let alone think about what happens afterwards,” said Hancock. “But we must not shy away from this difficult, and potentially life-saving, conversation.
“Hundreds of young lives were saved last year because of the selfless actions of 57 families. We must find the strength to have the incredibly difficult conversations that have the potential to save the lives of children and babies.”
Jack Brotton, 12, from Darlington, is currently waiting for a heart transplant. He was born with a congenital heart defect and has undergone numerous operations, but his health is deteriorating.
His mum, Sarah Robson, 36, said: “It is every mum’s worst nightmare. You’re on a rollercoaster and you don’t know when you’re going to get off or how it will end. We’ve always known Jack would need a new heart. With his complications he needs one now, it’s a chance at life.
“Organ donation is a light in a dark place, a hope for our tomorrows, the gift of life from a stranger, it’s so special and precious.”
Children can join the NHS organ donor register in England, although parents must give consent for donation.