Tetralogy of Fallot and VSD: Iolo’s Story

A routine check at four weeks old led to Iolo being diagnosed with congenital heart disease (CHD). Read his story, told by his mum, Jade:

(The photos in this story were taken by and belong to the author. The words and photos used to tell Iolo’s story are Jade’s own and reflect her personal recollections of their family’s journey.)

Iolo was diagnosed with Tetralogy of Fallot (Tof) at four weeks old, after a GP detected a loud heart murmur during a routine check. We were referred to paediatrics very quickly, and our world was turned upside down in one afternoon.

ToF is commonly diagnosed at the 20-week scan; however, this wasn’t the case for us. We have since learned that Iolo’s VSD was visible on the scan, but no referral was made for further checks.

I feel that, had we known prior to Iolo’s birth, we would have had more time to process the diagnosis and be better prepared for the road ahead.

We were devastated. I just wish we had been informed about Tiny Tickers when we were going through the worst time of our lives — the support would have been incredibly beneficial.

Iolo underwent his full surgical repair in July 2025, when he was six and a half months old.

Although the surgery was successful, Iolo now lives without a pulmonary valve, and a second surgery will be needed in the future.

Iolo has made a fantastic recovery, and we are so grateful to be where we are. He is meeting his milestones and is the happiest, most content little boy. We are so proud of him every single day.