Baby William in hospital

William's heart transplant story

“Our introduction to the world of heart disease was sudden, unexpected and truly terrifying."

It was August 2015 and our little boy, William, had been unwell with suspected gastro. But he wasn’t recovering, so we took him to a GP because he had started vomiting. We were told to take him home and give him panadol because the doctor thought he had a virus.

Baby William recovering after his heart transplant

Six hours later we were in emergency. William was actually in end stage heart failure with a diagnosis of dilated cardiomyopathy.

Everything was surreal. The next day we were told William was in a critical state and that he’d be put on an ECMO, or short term life support, and then most likely be given a VAD until a heart transplant became our only option.

We remember it was midnight and we were sitting with two cardiologists being told the news... we just sat there thinking ‘how did this happen? How did we not know?’

Now we understand the grunting breaths, the puffiness, the excessive sweating, the dry cough... they were all signs of heart failure. We couldn't believe it! Just that morning, William had been diving off the couch like any other crazy, unstoppable 17 month old baby.

Our life was full of anxieties for some time after. William had a rocky recovery and went into kidney failure after the transplant.

William sits outdoors, smiling at the camera

But now, eight years on William is doing well. We haven't really had any complications since those first few months. He does get unwell a bit and we had to be really cautious during COVID but he’s really just like any other boy his age. He’s played footy the last two seasons and he’s starting cricket this year. He loves to keep active and loves his sport.

We have annual heart biopsies to keep an eye on things and everything has been perfect so far. You never know what the future is going to hold of course but we just live every day as it comes and whatever hurdle comes our way, we will deal with it.

"We still can't believe how quickly our life changed. We are so grateful to the incredible doctors and surgeon, and how modern medicine gave our son a future,” - Julia, William's mum.

You can help kids like William 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.

Victor Chang Cardiac Research Institute - The Home of Heart Research for 30 Years