1. ITV Report

Family of baby awaiting heart transplant urge organ donor guidelines change

Parents Gary Brookhouse and Kaylee Hickman with their baby Ryan, who is awaiting a heart transplant. Photo: ITV News

A family whose six-month-old baby is waiting for a heart transplant have told ITV News they cannot understand why UK guidelines prevent the parents of newborn babies from donating their child's organs if they die.

The current code of practice prevents children under two-months-old from being declared brain dead and becoming an organ donor.

However, transplants can be done using organs imported from other European countries where the rules differ.

ITV News reporter Richard Pallot reports:

Ryan has been equipped with an air-driven pump device, known as a Berlin Heart, since he was three weeks old as he waits for a suitable donor.

His mother, Kaylee Hickman, told ITV News:

You're thinking, 'There are so many hearts and so many babies who have lost their lives and their hearts can't be used.'

Ryan has been on the Berlin Heart for five months and he could have had a heart - we could have been home and he could have been enjoying life, but at the moment he can't.

We have to look to Europe for hearts and we should be able to do that in this country.

NHS Blood and Transplant said families who lose a child in the first two months of their life "often ask about organ donation in hope that some good for others can come out of such sadness".

"Unfortunately, this is something we are not able to currently facilitate under current national guidelines from infants under the age of two months", a spokesperson added.

A study conducted at Great Ormond Street Hospital's neonatal and paediatric intensive care units between 2006 and 2012 concluded that just over half of the babies who died could potentially have been organ donors.

Babies like Ryan are forced to wait for an organ donor as their are not enough available. Credit: ITV News

Of the 84 infants aged between 37 weeks and two months old who died, 45 (54%) could have donated organs if their parents had consented, research suggests.

The report, published in Archives of Disease in Childhood, states that bringing UK rules into line with Europe, Australia and the US would transform care.

Dr Richard Kirk of Freeman Hospital in Newcastle told ITV News it was "a ridiculous situation".

Dr Kirk said: "We have children that are dying in the UK that would otherwise be alive if we were able to change our rules.

"In the last 18 months here at Freeman, we've had five babies who've died who may well have otherwise lived if these rules were changed".

Associate Medical Director for Organ Donation and Transplantation at NHS Blood and Transplant, Professor James Neuberger, has also welcomed the report's recommendation to reconsider the current guidelines.

Children over the age of two months are able to register themselves on the Organ Donor Register. Credit: Clive Gee/PA Wire

Joining the Organ Donor Register as a child

Parents and guardians are currently able to register children over the age of two months on the Organ Donor Register and children are also able to register themselves.

However, children under the age of 12 in Scotland and under 18 in the rest of the UK will require the consent of their parent or guardian for a donation to take place.

Children over 12-years-old in Scotland are considered legally competent and therefore their parent or guardian does not have the legal right to overrule their wishes.