Congenital heart disease affects up to one in every 100 babies. I was that one baby.
My name is Cara. I’m 35, and I’ve had five open heart surgeries.
I was born with a rare form of pulmonary atresia that’s linked to further complications. It was so rare and so little was known about it at the time, that it didn’t even have a specific name.
But it meant that I wasn’t expected to survive childhood.
I had my first open heart surgery at 3 days old. Doctors took a vein from my arm and tried to build an artery for my heart. But that didn’t work.
So I had another heart surgery at 6 days old. Then another at 6 months.
And then things seemed okay for a while.
As a kid, I led a pretty normal life. I knew I had a ‘zipper’ scar and that I had been sick as a baby, but my parents raised me to think I was no different to anybody else. They never wrapped me in cotton wool and always encouraged me to do everything I could.
Then when I was 21, I went into heart failure and had to have my fourth surgery.
“With that surgery, I got a new lease on life. I didn’t want any regrets. I had a wild heart and a passion for life.”
So I did all the things I’d ever dreamed of doing. I lived in New Zealand. I worked in Canada. I backpacked around South East Asia. I did a stint as a camp counsellor in the US. I snowboarded, hiked, explored – everything you would do with the world at your feet and a belief that the sky is the limit.
My fifth surgery, in 2017, came as a shock. I’d noticed some issues with my heart rhythm, but I thought my doctor, Professor David Celermajer, would just give me some medication. I didn’t expect he’d say surgery.
This time around, it’s been tough. People often don’t know, but the mental recovery is sometimes just as hard – if not more so – than the physical recovery. It was a major life-changing moment, but then you recover physically and are just meant to go back into society as if nothing had happened.
Medical science has come a long way.
In 1984, my heart condition didn’t even have a name. Now, my doctors can tell what is going on inside my heart and what they need to do to make sure I can continue to live a fulfilling life on my terms.
“I worry about the side effects of the coronavirus, as any sort of virus or infection could really be detrimental to a heart patient.”
Heart disease doesn’t define me. I’ve done so much. But there’s so much more I want to do. There are still places to explore, people to meet, stories to be told. I want to tell my story to inspire.
One thing I’ve come to realise is that it’s the little things that count, and the people around you. I want to set up a support network for people like me – kids with heart disease, who through the miracle of medical science have been able to grow into adulthood. We don’t quite fit into the ‘typical heart disease’ profile of being elderly, but we do need support. We do need further treatment.
And for me, the most important support has been my parents, Tom and Cathy, raising me to live life to the fullest. Without them, I wouldn’t have done the things I’ve done, and I wouldn’t be here today.
You can follow more of my story on Instagram at wildheart1984.
Tom's story
When our daughter Cara was born, the doctors told us she was a ‘blue baby’. We didn’t understand. But what it meant was that she was having trouble breathing… and with the heart problems, they didn’t expect her to live.
She had her first heart operation at 3 days old, then another at 6 days old. And then they told us to take her home and enjoy her while we could, because it would be a miracle if she lived past the age of 6.
We were expecting to lose our baby girl to this heart disease that we didn’t even understand.
Then one night, Cara’s mum Cathy received a call from one of the doctors, Professor John Wright. He said that he’d found a procedure that might work, but it hadn’t been performed on a baby Cara’s age before. There was no guarantee it would work, but it was up to us whether to try or not.
We knew we would always regret it if we didn’t give it a go, so at 6 months, Cara had another operation.
And here she is today.
But it hasn’t been easy. When she was a little girl, I’d tell her that she was part of a special club: “You’re in the zipper club”. And she loved that. But she got teased a little at school. She asked me once, “Dad, you know when I went to hospital? Did they cut out my heart?”.
I said, “No, love. Who told you that? You’ve got a beautiful little heart.”
She has a heart that still beats strong because of all that’s been possible through heart research.
She’s an inspiration to me – she’s a tiger. She’s got a lot of inner strength, and I draw from that. I watch her prep herself before each operation, and she makes me feel very, very proud.
Every time she goes in for surgery, I keep believing that she’ll be fine. That’s just the way I deal with it. I give her a hug when she goes to sleep, then give her a hug when she wakes up. With her most recent operation, it was a long day for me. A very long day. But a happy day.
She’s my tiger, and I’m proud of her. I’m so thankful that she’s still here today and that I can call her that.
How is HRI helping?
The Clinical Research Group is working on several exciting projects that will help to transform – and save – the lives of people with congenital heart disease (CHD).
With the Congenital Heart Alliance of Australia and New Zealand (CHAANZ), the Group is creating a CHD register to maximise the quality of life for CHD patients by providing the best of care for their life journey, by identifying deadly gaps in the healthcare system. This will be the largest compiled database on CHD in the world and the only resource of its type in Australia.
The Group is also conducting the world’s first randomised controlled study into the benefits of exercise for people with CHD. This information will then be used to develop guidance that can be rolled out across all corners of Australia via hospitals and telehealth services – including to remote areas and Indigenous populations that are at higher risk of cardiovascular disease.