This October, Audrey and her family will join the HeartKids community at the Adelaide Two Feet & A Heartbeat walk.
Audrey was diagnosed with congenital heart disease at 16 weeks gestation and underwent her first open-heart surgery at just four days old. Her mum, Lauren, reflects on their journey, the challenges of navigating care across Adelaide and Melbourne and the invaluable support HeartKids has provided through every stage.
Tell us about Audrey’s heart journey
Audrey was diagnosed with congenital heart disease around 16 weeks gestation. At the time, it was thought she’d need 1-2 surgeries throughout her life. When she was born she was whisked straight from the womb to PICU and 48 hours later was transferred by air from Adelaide to RCH in Melbourne to have her first open-heart surgery at four days old. It’s a long & complex story, but by the age of 3 she’d then had 4 open heart surgeries, a few pacemaker surgeries and 3 thoracotomies.
We’ve spent a lot of time in hospital between Adelaide & Melbourne. At age 2, Audrey became very unwell with a common respiratory virus which sent her in to multiorgan failure. She was placed on ECMO with a very bleak outlook and once again, transferred interstate. After a long recovery she eventually began to get better. We don’t know that the future holds for Audrey but at the moment she’s stable and living a full & very happy life.
How has HeartKids supported your family?
HeartKids have been such a huge support, particularly when in hospital. They’re a friend while on the wards, someone to bring you a coffee when you can’t leave the hospital room, give you a meal voucher, or a Christmas hamper when you’re stuck in hospital over Christmas. HeartKids staff have often taken our older child for a walk while we have meetings with doctors or brought her activities to help pass the time. They’ve also helped us in finding accommodation when travelling interstate.
What do you wish more people understood about childhood heart conditions?
Congenital heart disease isn’t always visible and it doesn’t end after surgery. Behind every diagnosis is a child and a family navigating medical appointments, uncertainty and sometimes some extra medical needs. Greater awareness, earlier diagnosis, and ongoing support can make a lasting difference.
What would you say to another heart family?
Go easy on yourself, look after you and ask for help when you need it.
To support families like Audrey’s, register to attend your local Two Feet & A Heartbeat walk today.
