THE parents of 11-week-old William Jones have made a moving appeal for people to sign up to the organ donor register.
Baby William was born in May with a genetic condition that means he desperately needs a heart transplant because his own is so weak.
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Mum and dad Laura Osborne and Stuart Jones, from Hemel Hempstead, are raising awareness about organ donation as they face the agonizing wait.
The new parents have moved to a hospital to be near their son, who is on life support in Great Ormond Street, London.
Laura, 35, said: “We missed him so much, we were home for a few weeks and he was a delight.
“His heart is not working well and he has been listed for an urgent heart transplant, which is the only option to save his life.
“We can wait a year or two, or more – he may not be able to have the transplant, but we will continue.
“We are terrified because it could deteriorate at any moment.”
Heart must be donated by another baby
William was born with dilated cardiomyopathy, a genetic condition that means the heart muscle is enlarged, making it too thin and stretched to pump blood properly.
It is estimated that around one in 250 people have it, but not everyone is seriously affected.
William is on the urgent transplant list, but will need a donated heart from another baby who has passed away.
There are 250 children on the NHS transplant waiting list in the UK, with 38 needing a new heart.
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Mum Laura said: “I’ve been a registered organ donor for a long time, but until now it hadn’t crossed my mind to think about donating children.
“Now we will count on a family’s acceptance to donate – William has no future without a heart transplant.
“Hearts the size of William don’t come around that often.
“We hope people see your story and think about organ donation.
“No matter what the outcome is for William, it’s so important to get the word out.”
Families of young organ donors tell us this can bring some comfort
Angie Scale
Angie Scales, a leading nurse at NHS Blood and Transplant, said: “For William and the many 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 suffering. regret.
“Losing a child is incredibly tragic and difficult.
“Families of young organ donors tell us that knowing that their child’s donation saved lives can bring some comfort.
“We ask parents to think and talk about organ donation for themselves and their families today.
“Your decision could help save lives.”
What is dilated cardiomyopathy?
Dilated cardiomyopathy (DCM) is a disease that enlarges part of the heart and causes it to become stretched, thin and weak.
It almost always affects the left ventricle – the lower left chamber of the heart, of which there are four in total.
The left chamber usually has thick muscular walls and its function is to pump blood with a fresh supply of oxygen to the rest of the body.
With DCM By making the walls of the chamber thinner – and therefore weaker – the heart cannot contract properly to pump blood to the rest of the body.
For many people, the cause of DCM is unknown. For others, it is caused by genetic mutations. The disease often runs in the family.
Other causes include:
- a heart valve problem
- uncontrolled high blood pressure
- other untreated heart disease
- disease of blood vessels or body tissues
- a viral infection, if it causes inflammation of the heart muscle
- lack of vitamins, excessive alcohol consumption and recreational drug use
- pregnancy – a heart muscle disease can sometimes develop as a complication, but most women recover over time
Common symptoms of DCM include:
- tiredness
- chest pain
- shortness of breathe
- swelling of the feet, ankles, stomach, and lower back
- palpitations – when your heartbeat seems to be racing, pounding, or throbbing in your neck or chest
They often develop slowly and can be controlled with medication and other treatments.
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