Reading ‘miracle boy’ returns home after a year in hospital
A Reading toddler has been dubbed a ‘miracle boy’ after returning from hospital for the first time in a year after suffering cardiac arrest and being diagnosed with a rare heart condition. Cairon Barry-Edwards was six months old when he was admitted to Southampton Children’s Hospital after suffering cardiac arrest at his home.
He was diagnosed with cardiomyopathy – a rare disease of the heart muscle that makes it difficult to pump blood to other parts of the body. Doctors repeatedly prepared Cairon’s family for the worst due to the severity of the illness, but he has now been able to return home.
Cairon, who is now 18 months old, was put on the heart transplant list while being treated in the pediatric intensive care and high-dependency units, although the chances of success are thought to be low. A spokeswoman for Southampton University Hospital said Cairon’s weight and age, combined with the likelihood of a donor organ being available and then successfully transplanted, meant “the odds were stacked against him”.
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Determined doctors refused to give up on Cairon and an “intense heart failure management plan” was drawn up for him. He used the expertise of a team of doctors, dieticians, nurses and pharmacists to find a way to help him gain weight – while finding a suitable drug to help support his heart condition and give the young the best chance of survival.
The spokesperson added: “Due to heart failure, Cairon was not gaining weight like other children his age due to severe discomfort in his gut every time he switched to formula. high risk of complications, the team developed a plan instead to feed Cairon using a method called parenteral nutrition – feeding him directly into the veins, bypassing the digestive system completely and thus relieving his heart.
“Once Cairon started gaining weight, cardiologist Dr Tara Bharucha began the long process of finding the right drugs to treat him. And with the agreement of Cairon’s mother, Dr Bharucha chose to test a new heart failure drug called Entresto, which, unlike its previous drug, can be safely taken at home.”
Dr Bharucha said: ‘Entresto has not been widely used in children and Cairon is thought to be one of the first children under the age of one in the UK to receive it. He is certainly the first in Southampton. It’s not something that would suit all young patients, but we hoped it would benefit Cairon and are delighted with the result.
She added: “When Cairon first came to see us he was a very sick little boy and there were several times when I had to discuss with his mum the possibility that he might not survive. But he amazed us with his determination and strong will – he really is our little miracle.
“We are all delighted to have been able to remove him from the transplant list for the time being and to finally be able to send him home.”
Cairon’s mother, Shantelle, 40, who hasn’t left her son since the day he was admitted, said: “It’s been a crazy year, a little fuzzy really. I haven’t been home for 12 months and I’ve only seen my other children Tafari and Ayanna a handful of times, but you just have to deal with it.”
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