Parents of baby who needs new heart plead for people to consider organ donation
William Jones, who was born in May, was diagnosed with a disease of the heart muscles when he was just weeks old.
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Your support makes all the difference.The parents of an 11-week old baby in desperate need of a heart transplant are urging people to consider organ donation.
William Jones, who was born in May, has a condition called dilated cardiomyopathy.
The disease causes the walls of the heart chambers to stretch and thin, affecting its ability to pump blood around the body.
William is the youngest child in the UK on the urgent waiting list for a heart transplant, according to NHS Blood and Transplant (NHSBT), and is currently on life support at Great Ormond Street Hospital in London.
Hearts in William’s size don’t come about all that often. We hope people will see his story and think about organ donation
A donor would have to be the same size and weight as the 11-week-old.
William’s mother Laura Osborne, 35, from Hemel Hempstead, said: “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.”
William is the first child of Ms Osborne and her partner Stuart Jones, 43.
The couple are currently living in hospital accommodation to be close to their baby.
After being delivered by emergency Caesarean, William was able to go home at 10 days old.
However, his parents noticed he was very sleepy and struggled to feed, so took him back to hospital three weeks later where he was diagnosed.
Ms Osborne added that a transplant is the “only option” for her son.
“We really miss him, we had a few weeks at home and he was an absolute delight,” she added.
“He’s funny and has these little frowns and facial expressions – he is cheeky. We want him back home.
“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.”
Families of young organ donors tell us that knowing their child’s donation has saved lives can bring some comfort
Angie Scales, lead nurse for paediatric organ donation at NHSBT, 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.”
According to NHSBT, there are currently more than 7,000 people waiting for an organ transplant in the UK, including 250 children.
Of those, almost 300 need a heart transplant, some 38 of which are children.
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