Sitting in our campervan in the hospital car park, my fiancé Jason and I had tried everything to distract ourselves.

After a walk and a coffee , we’d resorted to watching Spiderman films, but it wasn’t working. I was still anxious.

Inside Leeds General Infirmary, our 2-year-old son, Heaton, was undergoing open-heart surgery to fix an Atrioventricular Septal Defect (AVSD), a congenital heart defect characterised by a large hole or holes in the wall between the chambers of the heart. The waiting was torture.

Before Heaton, the only family history came from my maternal grandad, who had blocked arteries and underwent heart bypass surgery in his late 60s.

I thought heart issues were generally experienced by older people so when I fell pregnant in 2021, it wasn’t on our radar. In f

See Full Page