THE parents of 11-week-old William Jones have issued a heartbreaking plea for people to join 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 too weak.
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Mum and dad Laura Osborne and Stuart Jones, from Hemel Hempstead, are raising awareness of organ donation as they endure the agonising wait.
The new parents have moved into hospital accommodation to be near their boy, who is on life support at Great Ormond Street in London.
Laura, 35, said: “We really miss him, we had a few weeks at home and he was an absolute delight.
“His heart doesn’t work properly and he has been listed for an urgent heart transplant, which is the only option to save his life.
Read more on organ donation
“We could be waiting a year or two, or longer – he may not make it to transplant but we’re keeping going.
“We are terrified because he could deteriorate at any point.”
Heart must be donated from another baby
William was born with dilated cardiomyopathy, a genetic condition which means his heart muscle is enlarged, making it too thin and stretched to pump blood properly.
Around one in 250 people are estimated to have it but not all are seriously affected.
William is on the urgent transplant list but will need a heart donated from another baby that has passed away.
There are 250 children on the NHS transplant waiting list in the UK, with 38 who need a new heart.
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Mum Laura 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.
“No matter what the outcome is for William, it’s really important to spread the word.”
Families of young organ donors tell us it can bring some comfort
Angie Scale
Angie Scales, a top nurse 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.”
What is dilated cardiomyopathy?
Dilated cardiomyopathy (DCM) is a disease which enlarges part of the heart and causes it to be become stretched, thin and weak.
It almost always affects the left ventricle – the lower left chamber of the heart, which has four in total.
The left chamber usually has thick muscular walls and its job is to pump blood with a new supply of oxygen to the rest of the body.
With DCM making the chamber’s walls thinner – and thus weaker – the heart can’t squeeze properly to pump blood to the rest of the body.
For many people, the cause of their DCM is unknown. For others, it’s caused by gene mutations. The disease will often run in a family.
Other causes include:
- a heart valve problem
- uncontrolled high blood pressure
- another untreated heart condition
- blood vessel or bodily tissues disease
- a viral infection, if it causes inflammation of the heart muscle
- a lack of vitamins, drinking too much alcohol and using recreational drugs
- pregnancy – a disease of the heart muscle can sometimes develop as a complication but the majority of women recover overtime
Common symptoms of DCM include:
- tiredness
- chest pain
- shortness of breath
- swelling of your feet, ankles, stomach and lower back
- palpitations – when your heartbeat feels like it’s fluttering, pounding or thudding in your neck or chest
They’ll often develop slowly and can be controlled with medication and other treatments.