When Jade first heard the words “Tetralogy of Fallot” (ToF) at just four weeks old, it felt as though her world had been turned upside down. Her baby boy, Iolo, had been diagnosed with a serious congenital heart condition after a routine checkup revealed a loud heart murmur. In the blink of an eye, their lives shifted from the comforting routine of new parenthood to the unsettling world of hospitals and medical jargon.Tetralogy of Fallot is a complex condition involving four heart defects that affect how blood flows through the heart and lungs. It’s a diagnosis typically caught in the 20-week scan during pregnancy, but for Jade and Iolo, it was discovered much later. In hindsight, she learned that Iolo’s ventricular septal defect (VSD) — a hole in the heart — was visible during the prenatal scans. However, no further action was taken, and no referrals were made for further checks.The sense of unpreparedness that followed Iolo’s diagnosis weighed heavily on Jade. Had they known about the condition earlier, she believes they could have processed the information and prepared mentally for the challenging road ahead. “I just wish we had been informed about Tiny Tickers,” Jade shares, “Their support would have been incredibly beneficial during what was, without a doubt, the worst time of our lives.”Tiny Tickers, a charity that supports families and raises awareness about congenital heart conditions, would have provided a source of guidance and comfort. The uncertainty of their situation was overwhelming, and Jade’s only wish was …
When Jade first heard the words “Tetralogy of Fallot” (ToF) at just four weeks old, it felt as though her world had been turned upside down. Her baby boy, Iolo, had been diagnosed with a serious congenital heart condition after a routine checkup revealed a loud heart murmur. In the blink of an eye, their lives shifted from the comforting routine of new parenthood to the unsettling world of hospitals and medical jargon.
Tetralogy of Fallot is a complex condition involving four heart defects that affect how blood flows through the heart and lungs. It’s a diagnosis typically caught in the 20-week scan during pregnancy, but for Jade and Iolo, it was discovered much later. In hindsight, she learned that Iolo’s ventricular septal defect (VSD) — a hole in the heart — was visible during the prenatal scans. However, no further action was taken, and no referrals were made for further checks.
The sense of unpreparedness that followed Iolo’s diagnosis weighed heavily on Jade. Had they known about the condition earlier, she believes they could have processed the information and prepared mentally for the challenging road ahead. “I just wish we had been informed about Tiny Tickers,” Jade shares, “Their support would have been incredibly beneficial during what was, without a doubt, the worst time of our lives.”
Tiny Tickers, a charity that supports families and raises awareness about congenital heart conditions, would have provided a source of guidance and comfort. The uncertainty of their situation was overwhelming, and Jade’s only wish was to be given the resources and support that could help them understand and navigate the unknowns of Iolo’s condition.
At just six and a half months old, Iolo underwent a full surgical repair of his heart in July 2025. It was a moment that brought both hope and anxiety — the kind of moment every parent fears yet prays for: the chance for their child to have a better life. The surgery was successful, but the reality of Iolo’s condition didn’t end there. Though he made a great recovery, Iolo now lives without a pulmonary valve. This means that at some point in the future, he will require a second surgery to address this issue.
Despite the challenges, the joy of seeing Iolo bounce back after surgery has been nothing short of miraculous. Jade beams with pride as she recounts how her son has thrived post-operation. “Iolo has made a fantastic recovery. He’s meeting all his milestones and is the happiest, most content little boy. We are so proud of him every single day,” she says, her voice filled with emotion.
Iolo’s recovery has been nothing short of extraordinary, but his journey is far from over. There will be more hurdles to face, more surgeries to consider, and more unknowns in their future. However, with every milestone, Jade and Iolo’s story is one of hope, resilience, and an unbreakable bond between mother and child.
Through Iolo’s journey, Jade has learned not only the importance of early diagnosis and intervention but also the power of community and support. Her message is clear: while the road they have walked has been difficult, it has also been full of love, strength, and the unwavering determination to give Iolo the best life possible.
Iolo may still face challenges ahead, but as his proud mum, Jade knows that with every step forward, he is not just surviving, but thriving. He is not defined by his diagnosis, but by his spirit, his joy, and his ability to overcome the odds.
And as they continue their journey, Jade hopes that other families who find themselves in a similar situation will have access to the support and resources that she wishes she had known about in the beginning. Iolo’s story is a testament to the power of resilience and the strength that comes from facing the unknown with love, hope, and an unbreakable will to fight.
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