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Young Aussie living with half a heart: 'Don't know when it might be my last day'
Canberra student Taylor Colvin was only three days old when she had her first life-saving heart surgery, after being diagnosed with hypoplastic left heart syndrome (HLHS) at her mum’s three-month ultrasound.
Now 21 years-old, Taylor is one of the oldest Aussies living with the condition that has left her navigating life with only half a heart.
“Although always hoping for the best, the reality of death has helped me live life to its fullest, each and every day. I do not know when it might be my last day and I feel this is a good philosophy regardless of my heart condition,” Taylor tells Yahoo Lifestyle.
“I have a favourite Vivian Greene quote that has always helped me through tough times: ‘Life isn't about waiting for the storm to pass, it’s about learning how to dance in the rain'."
What is HLHS?
HLHS is a rare and very complex heart defect present at birth, in which the left side of the heart is underdeveloped. This means it can’t effectively pump blood through the body, requiring life-saving surgeries and medications to help the right side of the heart do the job for both.
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The challenges and positives of living with HLHS
Reflecting on her heart journey so far, Taylor says though "extremely challenging at times", her heart journey has also been a "positive journey".
“I have had the privilege of the most incredible specialist team behind me, including my surgeon Professor Christian Brizard and all the support staff from the RCH Melbourne; my paediatric cardiologist, Dr Stephen Cooper, and since turning 18 my amazing cardiologist A/Professor Rachael Cordina," she tells us.
“Without these individuals, I would not be alive and living my best possible life today. They have worked so closely with me to find ways to follow my dreams and pursue a life that I had otherwise been told would not be possible for me.”
Taylor has also found great support from her community.
“My support networks have been my greatest asset in helping me through tough times. I couldn’t do any of this without the ongoing support of my family, friends and medical team," she says.
“And, being out in nature and with animals have been my greatest comforts during challenging times, as has my Belgian Shepherd Nala, who is my rock.”
Currently one of the oldest Australians living with HLHS, doctors have told Taylor she’ll need a heart and liver transplant.
New research brings fresh hope
People born with half a heart or single-ventricle congenital heart disease (Fontan-CHD) are now living longer than ever before, thanks to advances in medicine and technology.
It also means they’re facing complex and previously undiscovered health problems.
New research led by Associate Professor Rachael Cordina from the Heart Research Institute, hopes to better understand common neurological complications for those with the condition, to improve health outcomes.
“There are ranging degrees of wellness with people living with the condition who are now expected to now live well into their 60s,” says Assoc. Professor Cordina.
“We know adults living with a Fontan circulation have poorer neurological outcomes and lower brain volume than adolescents – but we don’t know why.
“This project will study longitudinal trends in neurological outcomes to document, for the first time...and identify potentially modifiable factors with the ultimate goal of optimising neurocognitive outcomes in complex-CHD.”
There are approximately 1,600 people living with Fontan CHD in Australia and New Zealand.
Taylor hopeful research will improve quality of life
“I am hopeful that with continued research those of us with CHD will experience a better quality of life than what was expected when I was first diagnosed," Taylor says.
“I am so excited about the new research and feel privileged to be able to see the impact it will have on people’s lives.
“A highlight of being one of the oldest HLHS survivors in Australia is being able to see the advancements in medicine and the improving outcomes for younger CHD patients.
“This research will also help me and health professionals understand a little bit more about my condition and hopefully my future."
Taylor sees her heart condition as part of her life, and doesn’t let it limit her.
“My heart condition is something I have, not who I am. I have never let it define me or what I am capable of.”
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