A child with a heart condition has been dubbed a “miracle boy” after returning home from hospital for the first time in a year. Cairon Barry-Edwards was six-months-old when he suffered a cardiac arrest. He was diagnosed with a rare heart issue soon after.
Cairon suffers from cardiomyopathy – a rare disease of the heart muscle. It makes it difficult to pump blood to other parts of the body. Staff at Southampton Children’s Hospital treated him after he suffered a cardiac arrest at his home in Reading, Berkshire.
Challenges for Cairon
Doctors on multiple occasions prepared Cairon’s family for the worst because of the severity of the disease. However, he has now been able to return home. The now 18-months-old went on the heart transplant list, but the chances of a successful outcome were considered low.
A University Hospital Southampton spokeswoman 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.”
The team pulled together, though, and delivered a programme to help the boy gain weight. In addition, they sought out a drug that could help his heart condition.
Treating a child with a heart condition
The team developed a plan to nourish Cairon using a method called parenteral nutrition. This involved feeding him directly through the veins, completely bypassing the digestive system. The process reduced the pressure on his heart.
Cardiologist Dr Tara Bharucha worked with Cairon’s family to trial a new heart failure drug called Entresto. The bonus of this was that you can administer it 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.”
Although many experts were concerned he wouldn’t make it, Cairon made a strong recovery. He is now off the transplant list and safely at home. An encouraging sign for other parents with a child with a heart condition.
Cairon’s mother, Shantelle, 40, who has not left her son’s side since the day he was admitted, 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.”