HEART IN A BOX OP GAVE MY BOY GIFT OF LIFE...
Mum’s joy after string of surgeries
I was offered the choice of surgery or to take him home to die
from the ward where he was born in Stirling, Scotland, to the Royal Hospital for Children in Glasgow.
There, he had emergency surgery to boost blood flow through his narrowed arteries using tiny balloons.
Stephanie recalled: “It was touch and go he would survive. I was offered the choice of surgery or to take him home to die. It was that risky.”
That temporary fix made it safe to airlift Aaron to Birmingham Children’s Hospital where, at 24 hours old, he had the first of three operations.
Stephanie gave consent for the surgery using a mobile phone borrowed from the train conductor as she travelled to be with her son.
Seven months later he had surgery again, buying him more time by expanding the flow of blood through his heart. His third op in 2014, now aged three, nearly ended in his death. The procedure should have given Aaron up to 10 years before a transplant was needed – but it failed.
Soon after surgery he suffered a major stroke, partially paralysing him.
“This was the scariest moment in his life,” Stephanie recalled. “At one stage they told me that he might not last 24 hours and all my family came down to support me.”
After five months in intensive care Aaron was allowed home, but in a wheelchair and only able to attend nursery and school part-time.
His heart specialist predicted he would only live a year at most.
Stephanie, from Bo’ness near Edinburgh, said: “He was very weak, walking left him exhausted.
“He was missing out on growing up and playing with other kids, but I was
ON THE TRAUMA OF AARON’S BIRTH
just grateful I still had my wee boy. He was on the transplant list but we didn’t know if he’d get the call in time. We were living on the edge.”
In March 2018 the call came saying a possible match had been found. It was only when they arrived at Newcastle’s Freeman Hospital that Stephanie discovered her son was to be the first child in the world to undergo the transplant from a box.
She said: “They told me all about the operation and showed me a leaflet about it. I had to sign a different form to the normal consent form because it hadn’t been used on children before.
“I was ready to try anything to ensure my boy got a heart.” The device
was developed a decade ago by a firm in the US, making it possible to transport a donor heart that had been shocked back to life outside the body. A UK programme to use it on adults began at Royal Papworth Hospital, Cambridge in 2015. But it had never been used anywhere for child recipients.
Aaron was discharged six weeks after the op – and a year later medics were so pleased with his progress that they published their findings in a major medical journal, describing it as a world first. And he is now so full of life he is able to climb peaks near his home. Stephanie said: “He’s like any other kid – you wouldn’t know he’d been a sickly child who came very
close to dying.” Dr Abbas Khushnood, one of the Newcastle team involved in Aaron’s transplant, said he is grateful to Stephanie for allowing the op.
He said: “We’re delighted. We have a lot of children waiting – sadly children die every year because they can’t get a heart. Being able to use the box regularly would save more.”
Doctors at Papworth revealed last month they had collaborated with Great Ormond Street surgeons to save the lives of six children over the last year using the technology.
Stephanie said: “Hopefully it was the success with Aaron that led to them doing more. It’s brilliant they’ve saved those six during the pandemic.
“I just want to thank the Papworth surgeons and the surgeons from Newcastle for saving his life.”