William Jones, an 11-week-old baby, is currently the youngest child in the UK awaiting an urgent heart transplant. His parents are appealing to families to consider organ donation to help save lives like William’s.
William is on life support at Great Ormond Street Hospital in London. He was diagnosed with a rare heart condition called dilated cardiomyopathy just weeks after birth. This condition causes his heart muscle to be thin and stretched, impairing its ability to pump blood effectively throughout his body.
A heart transplant is William’s only chance of survival. To be a suitable match, the donor heart must come from a child of a similar size and weight.
William’s parents, Laura Osborne and Stuart Jones from Hemel Hempstead, have moved into hospital accommodation to be near their son. They welcomed William as their first child together in May and are now urging families to consider organ donation in hopes of saving more lives.
Laura, aged 35, says: “We really miss him, we had a few weeks at home and he was an absolute delight. He’s funny and has these little frowns and facial expressions – he is cheeky. We want him back home.
“His heart doesn’t work properly and he has been listed for an urgent heart transplant, this is the only option to save his life.
“We could be waiting a year, two, longer, he may not make it to transplant but we’re keeping going – he needs a transplant.
“It’s been a big shock. I had a feeling something wasn’t right but I didn’t think it was anything this serious – maybe lactose intolerance or something with his tummy. I just couldn’t get him to feed, he’d fall asleep.
“We are terrified, he could deteriorate at any point. Our feelings are all over the place, from hope to hopelessness. We’re trying to have a routine and live for the cuddles and playful awake times. I can’t hold him much and it’s heartbreaking.
“William has got a lot stacked against him, I don’t know if my baby is going to survive this or not. But he is here, you can see the fight in him and we’re trying to give him the best life we can. We still get smiles and he is playful when he is awake, he is showing us he wants to survive.”
Laura’s pregnancy went smoothly. William arrived by emergency caesarean section, weighing seven pounds nine ounces and was able to go home at ten days old for three weeks.
But he struggled to feed and was very sleepy and ended up back in hospital where he was diagnosed with dilated cardiomyopathy, a serious condition where the heart doesn’t pump properly.
William is now listed for an urgent heart transplant, being on the urgent waiting list means he is prioritised nationwide for a transplant due to how urgently unwell he is.
Laura adds: “I’ve been a registered organ donor for a long time but it hadn’t crossed my mind to think of children donating until now. Now we will rely on a family agreeing to donate – William has no future without a heart transplant.
“Hearts in William’s size don’t come about all that often. We hope people will see his story and think about organ donation.
“I want to raise awareness for William and all the children and patients waiting. No matter what the outcome is for William, it’s really important to spread the word and for people to think about organ donation now.”
Angie Scales, Lead Nurse for Paediatric Organ Donation at NHS Blood and Transplant, said: “For William and lots of children waiting for a life-saving transplant, their only hope is the parents of another child agreeing to organ donation at a time of immense sadness and personal grief.
“Losing a child is incredibly tragic and difficult. Families of young organ donors tell us that knowing their child’s donation has saved lives can bring some comfort.
“We urge parents to think and talk about organ donation for themselves and their family today. Your decision could help save lives.”
Right now there are more than 7,000 people in the UK, including 250 children, waiting for an organ transplant. Nearly 300 patients need a heart transplant, including 38 children. (1)
If organ donation is possible, parents will be asked to make a decision as part of their child’s end of life care.
To support donation on the NHS Organ Donor Register, visit www.organdonation.nhs.uk
Chris Mitchell is the founder and editor of Harrow Online, Harrow’s leading local news platform.
He launched Harrow Online in 2010 as a Facebook page sharing local news and information. Since then, it has grown into a trusted source for breaking news, crime, council decisions, planning, transport, business and community stories across the borough.
Harrow Online reaches hundreds of thousands of readers each month and has a social media audience of more than 200,000 followers.
For news tips, press releases or enquiries, contact Chris at info@harrowonline.org.
