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 Baby Leo in hospital; with tubes, drains and machines coming out of everywhere](https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-crop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=115&q=60&w=120 120w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-crop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=230&q=60&w=240 240w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-crop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=345&q=60&w=360 360w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-crop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=460&q=60&w=480 480w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-crop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=575&q=60&w=600 600w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-crop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=690&q=60&w=720 720w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-crop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=805&q=60&w=840 840w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-crop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=920&q=60&w=960 960w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-crop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=1035&q=60&w=1080 1080w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-crop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=1150&q=60&w=1200 1200w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-crop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=1265&q=60&w=1320 1320w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-crop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=1380&q=60&w=1440 1440w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-crop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=1495&q=60&w=1560 1560w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-crop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=1610&q=60&w=1680 1680w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-crop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=1725&q=60&w=1800 1800w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-crop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=1840&q=60&w=1920 1920w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-crop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=1897&q=60&w=1980 1980w)
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-year-old Leo with a football](https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-AFLcrop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=83&q=60&w=120 120w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-AFLcrop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=166&q=60&w=240 240w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-AFLcrop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=249&q=60&w=360 360w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-AFLcrop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=332&q=60&w=480 480w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-AFLcrop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=415&q=60&w=600 600w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-AFLcrop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=498&q=60&w=720 720w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-AFLcrop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=581&q=60&w=840 840w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-AFLcrop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=664&q=60&w=960 960w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-AFLcrop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=747&q=60&w=1080 1080w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-AFLcrop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=830&q=60&w=1200 1200w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-AFLcrop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=913&q=60&w=1320 1320w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-AFLcrop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=996&q=60&w=1440 1440w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-AFLcrop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=1079&q=60&w=1560 1560w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-AFLcrop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=1162&q=60&w=1680 1680w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-AFLcrop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=1245&q=60&w=1800 1800w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-AFLcrop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=1328&q=60&w=1920 1920w, https://victorchang-cdn.imgix.net/assets/src/uploads/Leo-AFLcrop.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=1370&q=60&w=1980 1980w)
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 Traditional Owners of Country throughout Australia and recognises the continuing connection to lands, waters and communities. We pay our respect to Aboriginal and Torres Strait Islander cultures; and to Elders past and present.