The parents of an 11-week –old baby in desperate need of a heart transplant are urging more families to consider organ donation.
William Jones is the youngest child in the UK on the urgent waiting list and is currently on life support at Great Ormond Street Hospital.
His only hope is the family of another infant his size and weight agreeing to donate their child’s organs.
Mum Laura Osborne 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 has a condition called dilated cardiomyopathy, which causes the walls of the heart chambers to stretch and thin, affecting its ability to pump blood around the body.
After being delivered by emergency Caesarean in May, William was able to go home at 10 days old.
But Laura, 35, and her partner Stuart Jones, 43, noticed their son was very sleepy and struggled to feed, so took him back to hospital three weeks later where he was diagnosed.
Laura, from Hemel Hempstead in Hertfordshire, said a transplant is now William’s ‘only option’.
‘We are terrified, he could deteriorate at any point,’ she said.
‘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.’
The couple are currently living in hospital accommodation to be close to their baby.
‘We really miss him, we had a few weeks at home and he was an absolute delight,’ Laura said.
‘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.’
Angie Scales, lead nurse for paediatric organ donation at NHS Blood and Transplant (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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