Five families waiting for life-saving heart transplants for their children at the Freeman Hospital have spoken out how important it is to talk about organ donation.
Beatrix Adamson-Archbold, Luke Myles, Ethan Mains, Nour Hussein and Leyla Bell are all currently waiting for a transplant on ward 23 at the hospital. Each of their families came together on Thursday to highlight how much of a difference to their lives organ donation would make.
As donor hearts only become available in the horrific circumstances of the death of a child, broaching the subject can be difficult, but the families hope that by talking about their own heartbreaking situations they can "plant the seed" so that other parents know that if they are ever asked about donating their child's organs, it has a tangible, life-saving impact.
Glasgow couple Stuart Mains and Alexa Ispas are parents to Ethan, who has just turned three. Last November he was suddenly taken seriously ill, and over the months since then it has become clear that his heart will not recover. The family is desperately hoping a donor heart will become available soon.
Alexa told ChroniclelLive of a traumatic eight months in hospital, so far. "We found out about Ethan's diagnosis on November 14. It's been a very very long time," she said. "Before then we thought our little boy was completely healthy. It's totally changed our life. Every single area of our lives has been affected in some way. He was so active and a little force of nature. So the changes in him have been so difficult. He's still happy, but he struggles to move half of his body and he's become almost bedbound.
"The hardest thing is seeing him in pain. Every day it gets harder."
Stuart added: "We were hopeful that his heart might recover but eight months on the specialists are saying that while it's not going to get better it's not necessarily getting worse. It's very much now a matter of waiting for a family to go through the most heartbreaking situation.
"It's the only way for Ethan to have a life. It's probably the worst time possible to be asked to consider organ donation - just after a child has died - that's such a horrendous difficult time but we are hoping that if people are more aware of reality of the waiting times and what these children have to go through on a daily basis, then it might be something they have already thought about.
“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. 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."
Beatrix Adamson-Archbold, 18 months, is another young patient waiting and hoping. For parents Terry and Cheryl, the situation is especially poignant. In 2018 following the death of daughter Isabel - who was stillborn - they donated her heart for research. Terry said: "The sense of grief I feel about Beatrix's situation feels the same as the grief I felt for Isabel.
"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."
And Ammar Hussein, father of Nour, 8 added that the length of time waiting for a transplant was added trauma. He 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."
Hundreds of children around the country are waiting for an organ transplant at any one time - with there usually about 48 waiting for a heart. According to NHS Blood and Transplant, in 2020/21 only 55% of families of those under 18 supported donating the organs of their loved one.
The families on ward 23 are desperate to see that figure rise. Leyla Bell is 10 months old and in intensive care waiting for a transplant. Her mum Savana has been a registered organ donor since the age of 16. Savana is acutely aware of the reality her family faces. “I wish there was another way but there isn’t," she said. "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.
“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 too."
Luke Myles has just celebrated his first birthday on the ward. Parents Cillian and Lesha shared the same sentiments. Cillian 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."
The Freeman has one of just two specialist units carrying out heart and lung transplants for children - so families come hundreds of miles for care. On average, children wait 88 days for an urgent heart transplant - that's double the length of time adults wait and can be much longer.
Find out more about organ donation at organdonation.nhs.uk/
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