The families of five children desperately waiting for a life-saving heart transplant in Newcastle have come together to raise awareness of organ donation.
Currently home to Beatrix Adamson-Archbold, 18 months, Luke Myles, 1, Ethan Mains, 3, Nour Hussein, 8 and Leyla Bell, 10 months is the Freeman Hospital, where they are all on the urgent waiting list for a donor heart.
Today, their parents have taken the courageous step of sharing their sons and daughters’ stories in the hope that their collective voice – and shared experience – will encourage others to have conversations about organ donation.
“Organ donation is such an abstract thing you never really think about it until you need to. I hope we can bring a little bit of human connection,” said Stuart, who is dad to three-year-old Ethan.
“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.”
There are hundreds of children in the UK waiting for an organ transplant with around 48 needing a heart – a figure that has remained relatively stable over recent years.
Many of the children currently waiting for a heart transplant are relying on a young donor to save their life and statistics from NHSBT show that parents that are asked about organ donation are less likely to donate a child’s organs with only 55% of families supporting organ donation for a relative under-18 in 2020/21.
Savana, mum to 10-month-old Leyla who is currently in paediatric intensive care, has been registered as a potential organ donor since she was 16. She is all too aware that in order for her daughter to get a heart, another child needs to die.
“I wish there was another way but there isn’t, and 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,” she said.
“I’d just hope they’d take solace in the fact that their child lives on in someone else. All we are asking is for people to have that conversation. If you asked 1,000 people, would they accept an organ if they needed it, they would because they want to live – and that’s all we want to do, I want to give my daughter that chance to…”
For Cillian and Lesha parents to Luke, who has just celebrated his first birthday on the ward, the experience of an almost year-long wait means that they would certainly donate their organs after they are gone, because they know first-hand what it’s like when a loved one so desperately needs them.
“We all need to remind ourselves every day how incredibly lucky we are to be alive and healthy,” said Cillian.
“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.”
As one of only two specialist centres in the UK that carry out heart and lung transplants for children most of the families on the unit find themselves a long way from home – Galway, Glasgow, Manchester and County Durham – and the wait for them is infinite.
Children on the urgent list for a heart transplant wait, on average, two and a half times longer than adults – around 88 days rather than 35 days. For many of our Freeman families, it has been much longer…
“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,” explained Nour’s dad Ammar.
One family, in particular, who know the enormity of donation is Terry and Cheryl whose daughter, Beatrix, has been in hospital since May. 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 without that, none of these children would have a chance at life.”
If you want to be an organ donor after you die, it’s really important that you talk to your loved ones and make sure they understand and support your organ donation decision.
You can also register your decision on the NHS Organ Donor Register. Find out more about organ donation in the UK here.
