True’s heart condition, Tetralogy of Fallot (ToF), was detected at her mum Chloe’s 20‑week scan. Here, Chloe shares their emotional journey in the hope of raising awareness and reminding heart families that they are not alone:
(The photos in this story were taken by and belong to the author, depicting their family’s personal journey.)
At my routine 20‑week scan, I was told that something didn’t look quite right with my baby’s heart. Everything had felt so normal up until that moment.
I was referred to Leeds General Infirmary for further tests and that’s where I was given the diagnosis. My daughter, True, had tetralogy of Fallot (ToF), a complex congenital heart condition.
When True was born, she was taken straight to the neonatal unit so she could be closely monitored. At just five days old, my tiny baby underwent a procedure to have a stent placed in her heart. It was overwhelming, but she showed incredible resilience from the very beginning.
After some time, I was able to bring her home, which felt like a huge milestone for both of us. Sadly, things then took a turn when True caught a cold. For babies with Tetralogy of Fallot, even something small can have a big impact and she began having frequent “blue spells”. She became very unwell and was admitted to intensive care, where she needed a lot of support.
It was then decided that True needed her full repair surgery sooner than planned. At just over six months old, she underwent open‑heart surgery to repair her heart.
Watching my baby go through something so major is something I could never truly prepare for. But True shows me every single day how remarkable she really is.
I know this won’t be the end of her journey and she may need further procedures in the future. But today, with her first birthday coming up soon, she is a cheeky, always‑smiling little girl who loves cuddles and is an absolute pleasure to be around. She truly lights up every room she walks into.
I am so incredibly proud of her.
I’m sharing True’s story to raise awareness of congenital heart conditions and to remind other families, especially those doing this alone, that they are not alone.
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