“I am only 16 years old but I have already had three open heart operations”

You would never guess that 16-year-old Garyn Jones suffers from heart disease.

Garyn, from Neath, was diagnosed with a congenital heart defect called tetralogy of Fallot when he was two weeks old. At 11 months old, he had his first pacemaker fitted and has since had three more open heart surgeries.

Despite a total of six surgeries so far, Garyn says he has been able to lead his life as normal.

Read more: ‘My mom died of a heart attack while on vacation when I was 16 – now I want to help others in her memory ‘

Garyn said: “I have never really felt different from other children, I often forget that I have heart disease until I have to have an operation.”

When Garyn was a baby his parents were sent home by a doctor outside of work hours after they became concerned about his breathing, but his mother Nicola listened to his gut and took her son to see their GP . You can read more of our health stories here.



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He was then referred to different specialist teams in Wales where he got his diagnosis.

Nicola said: “We were obviously very scared when we were diagnosed. Doctors told us not to google it, they feared we would be scared. We were also told to make sure it turned blue and soft, which was enough to scare anyone. “

Garyn’s first operation took place just three weeks after his birth.



Garyn Jones, 16, was born with rare heart disease and had three open heart surgeries
Garyn Jones, 16, was born with rare heart disease and had three open heart surgeries

Nicola said that despite five other surgeries, she still felt nervous every time he entered.

Nicola added “I don’t think there will ever be a time when I won’t be worried when he will have to have surgery, but he always comes out of it totally unfazed.”

Garyn recently had valve replacement surgery in 2020 and amazed doctors by getting up and out of his intensive care bed just one day after his open heart surgery.

He is an avid swimmer and began to do so in competition with Neath ASC, after being told by doctors that contact sports could pose a risk to his pacemaker.

The surgical team at the hospital have dubbed him “the swimmer” and Garyn attributes his training routine to his quick recovery.

“I would never be where I am today without my swimming. It has helped me a lot – obviously my fitness, but the social side has really helped me build my confidence and I love competing.

“The club is really united, it is as if we were a big family. I think they were a little worried at first, but they welcomed me straight away, they know my limits and adapt for me. It’s very competitive, but we’re all laughing. “



Garyn didn't let his health issues hold him back and quickly became an award winner in swimming
Garyn didn’t let his health issues hold him back and quickly became an award winner in swimming

While heart problems like Garyn’s are invisible disabilities, swimming exposed his scars which are a consequence of the surgeries. People watch sometimes, but Garyn isn’t afraid to discuss it.

Garyn said, “My scars are what make me, me. I think they’re really cool. I sometimes tell people that I fought a shark, but then I will tell them about operations.

Nicola added: “He’s amazing and takes it all in his stride, we’re so proud of everything he’s been through, and he doesn’t let his heart disease hold him back.”

While Garyn will have more surgeries ahead of him, he won’t let it get in the way of the sport he loves, with the ambition to one day make the Welsh national team.

Fergus Feeney, CEO of Swim Wales, said: “We are always inspired when we hear stories like Garyn, what an amazing guy he is.

“Swim Wales has championed the physical and mental health benefits of swimming for many years, and this is yet another example of how it can help a person excel in life. We wish Garyn, her family and club the best to continue to enjoy the benefits of aquatic sport.

BHF Cymru Director Adam Fletcher said: “The health benefits of swimming are well recognized. Swimming is one of the few activities that works your whole body.

“The breaststroke, backstroke, front crawl, butterfly and even the dog paddle move the legs and arms. It works the back and core muscles. Regular exercise is important for everyone to maintain their balance. health and swimming can be an enjoyable rehabilitation activity for people with heart disease, following the advice of their medical team.

“BHF Cymru is proud to partner with Swim Wales for this fantastic event which will help us fund vital research in heart and circulatory disease. “

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