Leo with his family after his third open heart surgery

Leo's story of Congenital Heart Disease

“We found out Leo had a severe heart defect when I went for my routine 20-week ultrasound."

The paediatric cardiologist confirmed that our little boy had hypoplastic left heart syndrome, our baby would be born with half a heart.

Baby Leo in hospital; with tubes, drains and machines coming out of everywhere

I can’t tell you how broken my own heart was that day. We were scared and unsure what this meant for him, but we knew if he’s anything like his mum, dad and sisters, he’d have a big fighting spirit!

At 3 days old he was whisked away for the first of three open heart surgeries. We waited 7 long, agonising hours for the surgery to be finished and when we finally walked into intensive care my feet felt like concrete.

I remember Leo lying there with tubes, drains and machines coming out of everywhere, and thinking ‘how did this happen?’. After two weeks we finally got to hold our baby boy for the first time.

Five-year-old Leo with a football

Five years on, we know the future is uncertain and at anytime things can change for us. Leo can go into cardiac arrest at any time, but we roll with the punches and take it a day at a time.

There will be more good days and bad ones too, but our Leo is everything we had dreamed for him. Despite having half a heart, Leo is a fighting fit very happy little boy with an even bigger personality.

As my husband says, he has more heart than anyone we know, and I think I’d have to agree,” - Jacinta, Leo’s mum.

You can help kids like Leo by supporting vital discoveries at the Victor Chang Cardiac Research Institute.

Acknowledgement of Country

The Victor Chang Cardiac Research Institute acknowledges the traditional custodians of the land, the Gadigal of the Eora nation, on which we meet, work, and discover.
Our Western Australian laboratories pay their respect to the Whadjuk Noongar who remain as the ongoing spiritual and cultural custodians of their land.