Named Riley, for it’s Gaelic meaning for brave, a UK newborn is living up to that name and more. At just 24 hours old, the tiny fighter survived a rare heart surgery that will hopefully buy him time until he is old enough for a transplant.
Riley has hypoplastic left heart syndrome, a condition that affects only one in 5000 births. When his mom Kerrie was 20 weeks pregnant, a routine ultrasound picked up the baby’s heart problem. At that time Karrie and husband Ryan were given three options – to terminate the pregnancy, give comfort care and let the baby die or opt for the most risky surgical route which they chose.
“I don’t think I would ever have forgiven myself if we hadn’t given him a chance at life.” Said Kerrie, “ We wanted this little boy so much. It was shortly after that scan that we decided to name him and fight every step of the way for him.”
Kerrie was then referred to Evelina Children’s Hospital in London, one of the world’s renowned centers for caring for children with cardiac problems, where she gave birth naturally to Riley 2 weeks early and weighing 6lb 3oz.
“Riley cried when he was born. I fell in love with him straight away.That was the only time I cried in front of him. Since then, I’ve tried to be as positive as possible as I thought he’d sense if I was upset. I’ve tried to stay happy and enjoy my gorgeous wee boy. I only had a two-minute cuddle with him before they took him away.”
Because Riley was born with only half a heart doctors needed to perform surgery on him right away.
Known as the Norwood procedure, surgeons worked to ensure that Riley’s single chambered heart could support the body by supplying blood flow to the lungs by using a plastic tube. Kerrie said:
“I didn’t really think of Riley not making it. I wanted to focus on him and make sure he knew I was there. It was a shock though. Before the operation we were able to get close to Riley but after the surgery a tube was breathing for him and we couldn’t cuddle him any more.”
During the days after his surgery Riley suffered a collapsed lung, but eventually he was declared well enough to travel home in Scotland.
While in hospital nurses kept daily notes of his recovery and as Kerrie celebrated her first mother’s day at home with her son she received a picture using paint prints from Riley’s feet.
“I got a World’s Best Mum rosette. Now we’re just enjoying every moment we can with him. Occasionally he will look a little blue but he’s getting bigger and stronger. We get more smiles out of him every day. I’m loving being a mum and doing ordinary things like going out with him in the pram. Everyone has been so kind.”
It hasn’t been easy for the family as all the procedures are expensive including the travel expenses they have to incur going to London.
But inspite of all the troubles and challenges, the couple know that their child is priceless and will do whatever it takes to give him a life. Riley will need three more operations at specific intervals till school going age to buy him time for the heart transplant and even after the surgeries doctors say he has 40% chance of survival without the transplant.
Kerrie is hopeful for the future.
“I hope Riley gets the chance to live all his dreams. He’s done so well so far. He’s definitely a fighter at heart.”
-Atula, Staff Writer
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