Thomas was fighting for his life from the very moment he was born. His tiny heart was beating dangerously fast, he was at severe risk of cardiac failure, and in urgent need of specialist care – the type of expert care that was not available in his hometown of Tasmania.

Clinicians knew that something was wrong with Thomas the moment he was born. His heart was beating at 200 beats per minute, and for a baby this was not just fast – it was life-threatening. 

“They couldn’t do anything for Thomas down here in Hobart. He had to be flown by helicopter to the RCH in Melbourne,” shared Thomas’ mum, Kate. 

So, instead of bringing their little baby home to their loved ones as first-time parents, Kate and Mark had to watch as Thomas was urgently airlifted to the RCH at just two days old. But they knew that this was his only chance of survival. 

Once at the RCH, Thomas was finally diagnosed with a rare and life-threatening heart condition that usually occurs after surgery – neonatal junctional ectopic tachycardia (JET). 

JET causes the heart to beat dangerously fast, sometimes for days, even weeks. Worst of all, it can be fatal – the heart muscle can become so weak that the child can sadly pass away without warning. A devastating and heartbreaking reality that no family should ever have to face. 

Thomas needed to be monitored around the clock. Clinicians and nurses checked on him hour after hour, a necessity but leaving his parents little chance to hold him. 

“All you want to do is cuddle them, show them off, dress them up in cute little outfits. We didn’t get to do any of that,” Kate said.

Seeing their baby boy poked, prodded, and connected to machines was heartbreaking for Kate and Mark. Through it all, one thing gave the new parents comfort. 

“I realised that we were in the best possible place that we could be… I trusted the specialists that were at the RCH straight away, and I was just so grateful to be there,” Kate reflected.

But saving Thomas’ life was far from simple. The problem lay deep within his heart and surgery wasn’t an option. Instead, doctors had to carefully trial and adjust medications – a meticulous process that was different for every child. 

“It was a slow process of trying new drugs and then seeing if they worked. If they didn’t work, they would slowly wean him off those drugs and try new ones,” Kate explained. 

It took two long months until clinicians finally found the right combination to stabilise Thomas’ heart. At last, Thomas, Kate and Mark were able to return to Tasmania and begin their life together as a family.

Four years later, Kate and Mark made the joyful decision to add to their family and make Thomas a big brother. Sadly, that was shaken by another devastating blow – their second child and Thomas’ new baby sister, Joan, was also born with JET.  

The family returned to the RCH to face the same uncertain journey. This time, though, they carried a sense of reassurance and trust in the world-leading clinicians who had already saved their son. 

“The fact that I already had those connections with the RCH and the specialists there, meant they were able to immediately get on top of it,” said Kate.

Kate and Mark have nothing but gratitude for the RCH and the clinicians who saved both Thomas and Joan’s lives. For their family, the expert care they received in Melbourne made all the difference, giving them a future that would not otherwise have been possible. 

Their story is a powerful reminder that the RCH’s impact extends far beyond Victoria, providing life-saving care and hope to children and families from across Australia when they need it most. 

“The RCH has saved not only my son, but also my daughter. They’ve saved a family,” Kate emphasised.

“We’re just a little family from Hobart, but we have been so helped by the RCH in ways that I can’t repay. And without them, we wouldn’t be here,” she concluded.