This October, Amelie and her family will be part of the HeartKids Two Feet & A Heartbeat campaign.
Amelie was diagnosed with a critical congenital heart defect at just 24 hours old and underwent life-saving open-heart surgery at three days old. Her mum, Sharon, shares their journey, the ongoing challenges they continue to face and the support they have found through HeartKids.
Can you tell us about Amelie’s heart journey?
Amelie was 24 hours old when she failed a routine newborn check. She was taken to NICU to be monitored, had an echocardiogram and a few hours later, a cardiologist diagnosed Amelie with a critical congenital heart defect called Total Anomalous Pulmonary Venous Return. She was transferred immediately to the Children’s hospital and had her life saving open-heart surgery at 3 days old.
She was nicknamed ‘Amelie the Brave’ after her surgery and throughout her life has continued to show us how determined and brave she is in overcoming any adversity.
Even though we are 10 years post Amelie’s open heart surgery, we are currently going through some challenges with her immune system thought to be caused by her heart condition and/or OHS. The last year has been a lot with increased testing and care under the Immunology Department of Sydney Children’s Hospital. As she gets older, the ongoing medical appointments are affecting her mental health. It’s a complicated journey for the whole family.
How has HeartKids supported your journey?
HeartKids unites heart families of all ages and stages of their journey, ours included. Throughout the years we have attended HeartKids Two Feet & A Heartbeat walks, which are a fantastic place to meet and chat with other local heart families. We have shared our journey through some of the corporate team building events, where they build products they then donate to charities, and have fundraised in Bunnings for HeartKids and attended the Special Children’s Christmas Party in 2025.
We are so grateful to have HeartKids who unites us at events so we can connect, cry and laugh with each other and share support. It can often feel like a very lonely journey, but it is comforting knowing HeartKids provides ongoing support for CHD children and their families throughout their lives.
We also love any opportunity to raise awareness for CHD. Raising awareness helps with fundraising and increased fundraising helps shape research that will improve health outcomes for generations to come.
What do you wish more people understood about childhood heart conditions?
For many heart kids, surgery is not a cure. There are many related conditions and challenges heart kids may face throughout their whole lives. The worry and concern for our kids does not go away.
What would you say to another heart family?
You are not alone. We have all been united by this one reason: please reach out for support and connection. Let’s advocate together for CHD.
To support families like Amelie’s, register to attend your local Two Feet & A Heartbeat walk today.
