A shocking diagnosis
“I had no idea anything was wrong with me.”
Jake was 22, studying for his master’s degree, feeling fit and healthy and completely unaware he’d been living with a life-threatening heart condition since the day he was born.
“It wasn’t something anyone could have seen coming. Not me, not my family, not the doctors at the hospital when I was born,” shared Jake.
It was only when he signed up for a medical trial that a routine health check showed something was very wrong.
Jake spent the next four years in and out of hospitals, trying to get to the bottom of what was going on. It was a long and unsettling journey that eventually led to a full diagnosis. Jake was born with a Partial Atrioventricular Septal Defect (AVSD), a major congenital heart defect.
“It turns out that I was born with a major heart defect called a Partial Atrioventricular Septal Defect . The defect was significant but I went through school, university and up to the age of 22 none-the-wiser that I had any issues at all and appeared completely symptomless”shared Jake.
The condition is incredibly serious. “More than 50% of babies born with AVSD die in infancy,” Jake explained. “And for the small number who survive without it being detected – like me – the prognosis is just as bleak. Most don’t make it out of their twenties or thirties.”
Doctors told him that without surgery, his life expectancy was around 40 years old. And until that point, he had no idea anything was wrong.
“It’s not just that I was lucky to survive – I was lucky to even find out in time.”
Lifesaving heart surgery
“On 7th November 2023, I had a seven-hour open-heart operation. They saved my life.”
After weeks of nerves and preparation, Jake was admitted to St Bartholomew’s Hospital. The following day, he underwent open-heart surgery that included a median sternotomy with valve reconstruction.
Jake in hospital.
“There was a long list of things that could go wrong…And honestly, there were a few shaky moments afterwards. But the team at St Bartholomew’s Hospital were just unbelievable,” reflected Jake.
A week later, Jake was home. Three months off work followed, giving him time to recover and process his journey.
Jake’s active recovery
“A year on, I feel as good as ever.”
“I am pleased to say that now, a full year later, I am fully recovered and, aside from sporting a nice long scar down my chest, feel as good as ever. It's all thanks to the doctors, nurses and specialists at St Bartholomew’s Hospital and Great Ormond Street Hospital. Over the course of the 7 hours in the operating theatre, my life expectancy has doubled from 40 to 80. A (pretty good return on time invested!)”Jake
Since his surgery, Jake has run the Brighton, Berlin and Amsterdam marathons, completed a 100km bike race, taken on a triathlon, and swum two miles in the Swim Serpentine. The operation has given Jake a new lease of life and he’s determined to make the most of it.
“I promised myself I’d never take my health for granted again. So, I’m making up for lost time.”
After successful surgery Jake is now proud to show his scar.
Fundraising for Barts Charity
This year, Jake ran the iconic London Marathon to fundraise for us and to say thanks to those who helped turn his life around. Jake has raised over £2,800 through his JustGiving page – what an incredible achievement, we couldn’t be more grateful. Thank you, Jake.
“I’m running for Barts Charity to say thank you — to the doctors, the nurses, the specialists who literally saved my life. Without them, I wouldn’t be here.”Jake
Jake also shared that he ran for others: for the people who haven’t had their diagnosis yet, for the families going through similar journeys, and for the future breakthroughs that medical research can bring. Choosing to support us knowing that his fundraising can help both now and in the future.
“This could have gone the other way so easily…AVSD is brutal. Most people don’t get the second chance I got. I know how lucky I am, and I’ll never forget it,” said Jake.
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