This October, Joshua and his family will join the HeartKids community at the Melbourne Two Feet & A Heartbeat walk.
Joshua was diagnosed with several congenital heart defects before he was born, including the complex condition Hypoplastic left Heart Syndrome (HLHS). What followed was a challenging start to life, involving three open-heart surgeries, 111 days in hospital, a feeding tube and months of intensive care.
Following his most recent Fontan surgery in 2024, Joshua has embraced life with renewed energy and enthusiasm. His dad, David, shares their family’s journey, the lifelong reality of congenital heart disease, and the support HeartKids has provided along the way.
Can you tell us about Joshua’s heart journey?
Joshua was diagnosed with several congenital heart defects before he was born. The most complex one was Hypoplastic Left Heart Syndrome, which would require three open heart surgeries. He had surgery at 17 hours old and 3 months old, and spent his first 111 days of life in the Royal Children’s Hospital. He came home with four medications and a feeding tube, and by the end of his first year he was just on aspirin. Joshua became a big brother when he was 13 months old, endured a couple of years of lockdowns missing friends and family and overcame some initial developmental delays. He started school in 2024 and had his third open-heart surgery, the Fontan, in July. After 17 days in hospital, he came home and was like a new child. While it wasn’t a cure and there have been ongoing health challenges, he has certainly been given a new lease on life in terms of his energy levels and what he can do physically.
How has HeartKids supported your family?
HeartKids has supported us in many ways. They have given us a community of people who understand the challenges of our journey with Joshua in a way that our family and friends can’t. They have given us opportunities for connection: the morning teas, online and in-person get-togethers, Box Hill Miniature Railway, Family Camp in 2023, partnerships with Corporate Challenge and Marketplace Fresh just to name a few. Fundraisers such as Two Feet & A Heartbeat, Hero for HeartKids and Sweethearts Day have also created further opportunity for connection, advocacy and awareness and we always look forward to each one. HeartKids has given our family a bigger purpose beyond Joshua’s condition. They have helped us get through the hard times, with support during inpatient stays, outpatient appointments and life outside of hospital, which has also created valuable core memories for our family. This is why we will always advocate for and support HeartKids.
What do you wish more people understood about childhood heart conditions?
Most congenital heart defects are more complex than ‘a hole in the heart’ and are managed, not fixed. CHD is lifelong. I know it might be hard to know what to say, but comparisons like ‘I knew a kid with a similar condition and they’re fine now’, while well-meaning, aren’t necessarily helpful.
The journey doesn’t stop after the surgeries are over and the families affected by CHD still need your support. We found that our village all but disappeared once Joshua had recovered from his surgeries and appeared to be ‘normal’.
What would you say to another heart family?
As CHD families, we’ve all been dealt a life circumstance which we wouldn’t wish on anyone. The trauma we all experience is real; please don’t ignore it and seek help if you need to. You are brave, inspiring, resilient and courageous. Keep advocating for your child and make the most of every moment.
To support families like Joshua’s, register to attend your local Two Feet & A Heartbeat walk today.
