“It’s terrifying being one of the oldest Australians living with HLHS (hypoplastic left heart syndrome) because it means we don’t know what my future will look like … but I just take each day and each year as it comes,” says 21-year-old Taylor Colvin.

A Canberra university student, Taylor was diagnosed with HLHS at her mum’s three-month prenatal ultrasound – she was yet to even take her first breath.

For her whole life, Taylor has lived with the prospect that each day may be her last, engraining a sense of carpe diem in the way she chooses to live.

“If I see an opportunity to do something I want to do, I just do it. There are so many things I want to do in this world and living with the reality of death has made me enjoy life more than I think I would if I were ‘normal’,” she said.

Studying both a Bachelor of Law and a Bachelor of Politics and International Relations, Taylor is still trying to figure out what she wants to do in life, like any normal young person, but one thing is for certain – she’s going to do whatever she wants.

“I know I eventually want to be a lawyer, I love law, but I want to travel for a couple of years before that, maybe be a nanny overseas. My favourite subjects are intellectual property law and technology law. Most people think I’m crazy, but I love it,” she smiled.

At just three days old, Taylor underwent her first open heart surgery, followed by her second at three months and her third at three years.

“I know for sure this has been hard on my mum. She fought so hard to have me – most if not all the doctors told her to have an abortion, and then seeing her baby’s chest sawn open at three days old without even getting to hold me yet must have been so hard,” Taylor said.

“My little sister is four years younger than me, and she also sometimes struggles with the fact her big sister is terminally ill, so we try not to talk about it too much in front of her.”

It’s highly likely Taylor will require a heart and liver transplant at some point in her life, but she said the prospect doesn’t scare her.

“I try not to think about it, but my parents have always explained everything to me, so I know how to approach it and if it were to happen, I’d be mentally ready,” she said.

“Knowledge is beneficial and I’m glad I’m not one of those other kids whose parents didn’t explain their illnesses to them and the realities of it.”

Her passion and excitement for life is obvious from just one conversation with the bright, young woman who seems sure to make her mark on the world.

People with complex congenital heart disease are now living longer

Across Australia and New Zealand, there are around 1,600 people living with Fontan-CDC; meaning they were born with half a heart or have single-ventricle congenital heart disease.

Associate Professor at the Heart Research Institute Rachael Cordina is embarking on a world-first longitudinal study attempting to understand the potential mechanisms, timing, and trajectory of neurocognitive dysfunction within Fontan-CDC patients.

“This project will study longitudinal trends in neurological outcomes to document, for the first time, the natural history and identify potentially modifiable factors with the ultimate goal of optimising neurocognitive outcomes in complex-CHD,” Associate Professor Cordina said.

This extraordinary group of survivors are rapidly expanding due to the improvements in surgical and critical care; however, this has created an unprecedented wave of patients with “poorly characterised and complex health problems.”

“For decades it was all about keeping them alive as children but advances in medicine have meant we now have a cohort of patients. It is so amazing to be looking after a group of people never expected to survive into adulthood,” Associate Professor Cordina said.

“The patients and families are just so grateful for someone to be truly looking after their child and I’m now helping a new generation of people, whose parents were told they’d never survive, and they are now getting married and having families of their own.”

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