Families of children in need of heart transplants appeal for organs

The families of five children waiting for heart transplants at one hospital are urging people to consider becoming organ donors.

Ten-month-old Leyla Bell, 18-month-old Beatrix Adamson-Archbold, Luke Myles, one, Ethan Mains, three, and Nour Hussein, eight, are being cared for at Newcastle's Freeman Hospital.

They are kept alive with portable blood pumps and are rarely allowed outside.

The number of available donors has dropped since the pandemic.

Beatrix has been in hospital since May and her parents, Terry and Cheryl, from Burnopfield, County Durham, have first-hand experience of what a huge step donation can be.

They agreed to donate their daughter Isabel's heart to research in 2018 after she was stillborn with a defect in the left side of her heart.

"The sense of grief I feel about Beatrix's situation feels the same as the grief I felt for Isabel," said Terry.

"We agreed for the organ donation to take place and we have taken comfort from that since.

"The reality is without parents considering the unthinkable or choosing to donate in the midst of their own tragedy none of these children would have a chance at life."

Ethan's father Stuart Mains, from Glasgow, said: "Organ donation is such an abstract thing you never really think about it until you need to.

"It is a horrific situation, and I wouldn't wish it on anybody, all we can ask is that anyone who finds themselves faced with this decision gives it a little consideration and thought."

The Freeman Hospital is a specialist centre for heart operations. It said about 48 children in the UK currently needed new hearts, with hundreds more waiting for other organs.

Many of them require a heart from a young donor, and NHS Blood and Transplant said about 55% of families who suffer the death of someone under 18 agree to a donation - a figure the organisation hopes will rise.

Leyla is in paediatric intensive care, and her mother Savana, from Heywood, Greater Manchester, is aware that another child must die for her daughter to get the heart she desperately needs.

"I wish there was another way but there isn't," Savana said.

"I can understand why some people say no as they are being asked to donate an organ at the worst time in their lives; when they've been told they will never see their child awake again.

"I'd just hope they'd take solace in the fact that their child lives on in someone else."

Luke has just had his first birthday in hospital and his parents Cillian and Lesha, from Galway, Ireland, said: "We all need to remind ourselves every day how incredibly lucky we are to be alive and healthy.

"We know that every single parent in our situation would make the decision to be an organ donor and would donate their child's organs in that most awful and unthinkable situation."

Children on the urgent list for a heart transplant wait, on average, two-and-a-half times longer than adults - about 91 days rather than 35 days.

For many of the Freeman families, it has been much longer.

Nour's father Ammar, from Manchester, said: "When we first arrived, I don't think we understood just how long this process could be.

"We thought we wouldn't be here too long, but it was a big shock to hear about families who have waited one or two years for a donor to become available.

"Now we know we could have a really long wait ahead of us."

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