A lack of families prepared to donate children’s organs after they die means poorly youngsters are unable to get transplants they desperately need.
Parents are being urged to consider organ donation after latest figures showed that the number donating has barely increased in recent years.
While organ donations from adults have risen by a fifth since 2003/4, the number from children has remained static. NHS bosses hope to convince more families to donate organs so their youngsters become lifesavers and help other parents avoid the trauma of losing a child.
There are currently 177 children waiting for an organ transplant in the UK and in 2017/18, 17 children died while on the waiting list.
Health and Social Care Secretary Matt Hancock said: “Mr Hancock said: “It is heartbreaking that hundreds of very ill children and babies are waiting for an organ right now and that last year 17 families went through the unimaginable pain of losing a child while they are waiting for a lifesaving organ.
“I completely understand how difficult it is to even contemplate losing a child, let alone think about what happens afterwards.
“But we must not shy away from this difficult, and potentially life-saving, conversation.”
In 2017/18 organs from 57 children resulted in 200 transplant operations, only slightly up on the 55 child donors in 2013/14.
Children often 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.
NHS Blood and Transplant has launched a new strategy which includes more support for families and training on organ donation for clinical staff.
It hoped agreements can be reached with coroners where organ donation does not compromise investigations into the death of children.
An opt-out system of organ donation in England is set to be introduced next year but will not apply to children.
Parents who decided to donate organs include Emma Settle and Lloyd Naylor, of Leeds, whose 12-year-old daughter Hoshi died in a road accident in January 2018.
Hoshi’s kidneys, pancreas, liver and heart were donated to four people who needed transplants.
Mr Naylor, 45, said: “It means another family is not feeling the loss of a loved one because they can’t find a donor.
“Even though Hoshi has gone, somebody else has been given the opportunity to have a life which they wouldn’t have had.”
Children can join the NHS organ donor register in England, although parents must give consent for donation.