More child organ donors are ‘desperately needed’

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, the numbers from children have remained static.

Health and Social Care Secretary Matt Hancock, who is backing a new NHS campaign, said it was “heartbreaking that hundreds of very ill children and babies are waiting for an organ right now”.

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.

There are currently 177 children waiting for an organ transplant in the UK. 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.

Young 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.

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 is hoped agreement could be reached where organ donation could take place while at the same time not compromising the work of the coroner.

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.

“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.”

NHS Blood and Transplant said the new strategy aims to embed organ donation, when possible, as a routine end of life choice.

New plans to introduce an opt-out system of organ donation in England next year will not apply to children.

Anthony Clarkson, director of organ donation and transplantation at NHS Blood and Transplant, said: “For many children on the transplant waiting list their only hope is that the parent of another child will say ‘yes’ to organ donation at a time of terrible personal grief.

“We know parents who agree to donate their child’s organs gain great comfort from knowing that their child has saved the lives of other young people and spared another family the awful loss of a child that they have suffered.”

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.

“He’s only ever been sick. He’d love to play a game of football, just do normal things like any young lad.

“I battle with the fact that someone’s child will have to lose their life for my child to live.

“They wouldn’t just be saving Jack though, but his mum’s life too, and all our family. What an amazing gift to come from a tragic loss.

“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.