Miracle boy with rare heart disease defies the odds and goes home after spending a year in hospital

A ‘miracle’ boy who was diagnosed with a rare heart condition that doctors feared he wouldn’t survive, has defied the odds and finally gone home after spending a year at University Hospital Southampton. 

 Cairon Barry-Edwards was just six months old when he was admitted to Southampton Children’s Hospital having suffered a cardiac arrest at home. He 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. 

 The poorly youngster was put on the heart transplant list while being treated in the paediatric intensive care and high dependency units, but mum Shantelle was warned that the chances of a successful outcome were very low.   

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, using the expertise of a team of doctors, dieticians, nurses and pharmacists, which aimed at finding a way to help him gain weight while also finding a suitable drug to help support his heart condition and giving the youngster the best possible chance of survival.  

Due to being in heart failure, Cairon was failing to gain weight like other children his age because of severe discomfort in his gut every time he was moved over to formula milk.

At high risk of complications, the team developed a plan to instead nourish Cairon using a method called parenteral nutrition –feeding him directly through the veins, completely bypassing the digestive system and therefore taking pressure off his heart. 

 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.  

 

“Entresto hasn’t widely been used in children and 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   

She added: “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.”    

Dr Bharucha also praised the resilience of Cairon’s mum, Shantelle, 40, who has not left her son’s side since the day he was admitted, sleeping both on the wards and at Ronald McDonald House.    The mum-of-three from Reading, said “It’s been a crazy year, a bit of a blur 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 go with it.     

“I never doubted for a minute that we wouldn’t be going home one day. It wasn’t an easy path to get here, but I always knew deep down that Cairon would be ok.   

 “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 but, for now, he is home and just in time to celebrate the 17th birthday of his big brother, Tafari.