The families of five children waiting for a heart transplant have come together to urge others to consider donating their organs.
Since the pandemic, the number of available organs has decreased, meaning extremely sick children are waiting even longer for life-saving surgery.
Ten-month-old Layla Bell, 18-month-old Beatrix Adamson-Archbold, one-year-old Luke Miles, three-year-old Ethan Mains and eight-year-old Noor Hussain are admitted to Ward 23 at Newcastle's Freeman Hospital.
They are kept alive by portable blood pumps, but cannot leave the hospital for long periods and rarely go out.
The five are in urgent need of new hearts and their parents have joined forces to encourage more people to register to become donors in case they die.
Ethan's father, Stuart Mains, from Glasgow, said: “Organ donation is an abstract thing that you don't really think about until you need it.
“I hope to create some kind of connection between people.
“This is a horrific situation and we wouldn't wish this on anyone. All we can ask is that anyone faced with this decision please take a moment and think about it.”
The Freeman Hospital is a specialist heart surgery centre and says around 48 children in the UK currently need a new heart, with hundreds more waiting for other organs.
Many of them need hearts from younger donors, and the NHS Blood and Transplant Centre said around 55% of families of people under the age of 18 agree to a heart donation – a figure it hopes will rise.
Layla is in the paediatric intensive care unit while her mother Savannah, from Heywood, Greater Manchester, has been a registered organ donor since she was 16 and knows she needs the life of another child to give her daughter a heart.
She said: “I wish there was another way but there isn't. I can understand why some people would refuse, when they are asked to donate their organs at the worst time of their lives and are told they will never see their child wake up again.”
“I just hope that they can find solace in the fact that their child lives on in someone else.
“All we’re asking is that people have that conversation.
“If you ask 1,000 people if they would accept an organ transplant if they needed to, they would accept it because they want to live. That's what we want. We want to give our daughter that chance.”
As Luke celebrated his first birthday in hospital, his parents, Cillian and Lesha, who live in Galway, Ireland, said: “We all need to be reminded every day how lucky we are to be alive and healthy.”
“We know that any parent in our situation would decide to become an organ donor and donate their child's organs in the most terrifying and unthinkable circumstances.”
Children on the emergency heart transplant list wait, on average, 2.5 times longer than adults – about 91 days instead of 35 days.
For many Freeman family members, it's a much longer period.
Noor's father Amar, from Manchester, said: “When we first arrived I don't think we realised how drawn out the process was going to be.
“We thought we wouldn’t be here for long, but it was devastating to hear stories of families who had to wait one or two years to find a donor.
“Now we know we're going to have some really long waits ahead of us.”
Beatrix has been in hospital since May and her parents, Terry and Cheryl, from Burnopfield, County Durham, know what a huge step organ donation is, especially since she has been in hospital since May.
After their daughter, Isabel, was stillborn in 2018 with a defect on the left side of her heart, the couple agreed to donate her heart for research.
“My sadness about Beatrix's situation is the same as the sadness I felt for Isabel,” Terry said.
“We agreed to donate the organs and have taken solace from that ever since.
“The reality is that none of these children would have a chance at life unless their parents considered the unthinkable, or chose to donate their organs in the midst of their own tragedy.”
Paediatric intensive care consultant Emma Simpson said: “These children are being kept alive by a blood pump.”
“Without the blood pump they would not be able to survive. They are totally dependent on this life-saving technology.”
“It's a very artificial way of life, a very mechanical way of life.”
A spokesman for Mr Freeman said: “If you want to become an organ donor after your death it's really important that you speak to your loved ones and make sure they understand and support your decision to donate.”
“You can also register your wishes on the NHS Organ Donor Register.”
For more information about organ donation in the UK, Organ Donation Websites
