Parents of 11-week-old baby who needs urgent heart transplant urge families to think about organ donation

The parents of a baby who urgently needs a heart transplant are calling on families to think about organ donation to help save more lives.

William Jones is currently on life support at Great Ormond Street Hospital, London, and is the youngest child in the UK on the urgent waiting list for a heart transplant, aged just 11 weeks old.

He was diagnosed with a rare heart condition, dilated cardiomyopathy, when he was just a few weeks old. His heart muscle is thin and stretched and cannot pump properly to squeeze blood around his body.

William's only chance of survival is a heart transplant. The organ donor will need to be of a similar size and weight to William.

William's story

Parents Laura Osborne and Stuart Jones, from Hemel Hempstead, are now living in hospital accommodation to be closer to him. They welcomed William as their first child together when he was born in May.

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."

Statements

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.

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 our website.