'Miracle' boy with rare heart condition defies the odds and leaves hospital
Cairon Barry-Edwards suffered a cardiac arrest at six-months-old
Last updated 21st Jun 2022
A little boy with a rare heart condition has defied doctors' expectations after spending a year in Southampton Children's Hospital.
They feared Cairon Barry-Edwards would not survive after suffering a cardiac arrest when he was six-months-old.
After being given a new heart failure drug and intensive treatment he was finally cleared to go home.
Cairon was diagnosed with cardiomyopathy, a rare disease of the heart muscle which makes it difficult to pump blood to other parts of the body. 
Due to the severity of his disease and the fact he was so tiny, doctors on multiple occasions had to prepare Cairon’s family for the worst. 
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. 
But determined doctors refused to give up and an intense heart failure management plan was drawn up for Cairon aimed at finding a way to help him gain weight.
Once Cairon started to gain weight, cardiologist Dr Tara Bharucha started the lengthy process of finding the right drugs to treat him with. 
With the agreement of Cairon’s mum, Dr Bharucha opted to trial a new heart failure drug called Entresto, which unlike his previous medication, can be safely administered at home.  
Dr Bharucha said: "Entresto hasn’t widely been 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’s certainly the first in Southampton. 
"It is not something that would be suitable for every young patient, but we were hopeful it would benefit Cairon and are so pleased with the outcome .
"When Cairon first came to us he was a very poorly little boy and there were several moments when I had to discuss with his mum the possibility that he might not survive. But he has amazed us with his determination and strong will – he really is our little miracle.  
"We are all so delighted that we have been able to remove him from the transplant list for now and can finally send him home."
 Cairon's mum Shantelle, 40, from Reading. said: "I just want to say thank you to everyone involved in his treatment and care at Southampton Children’s Hospital.
"They have been amazing and the fact that I am getting to take my son home says it all."
Cairon, now 18 months old, will continue to need care and there is a possibility he will require a heart transplant as he grows.