This October, Eleanor and her family will join the HeartKids community at the Ballarat Two Feet & A Heartbeat walk.
Eleanor was diagnosed with a complete Atrio-ventricular Septal Defect (AVSD) at her 20-week scan and has undergone two open-heart surgeries, the first at just 6.5 weeks old. Eleanor’s mum, Emma, shares their family’s journey through diagnosis, surgeries, the support they found through HeartKids and the resilient, courageous young girl Eleanor is today.
Can you tell us about Eleanor’s heart journey?
Eleanor is the youngest of our three daughters, and our heart warrior.
Our journey began when Eleanor was diagnosed antenatally at our 20-week scan with a complete Atrio-ventricular Septal Defect (AVSD), and her diagnosis changed our lives forever.
Since being diagnosed with a congenital heart condition, we’ve navigated appointments, procedures, uncertainty and many emotional highs and lows, while celebrating every milestone along the way.
Eleanor had her first open heart surgery at just 6.5 weeks old to repair the AVSD and then underwent a second surgery at 17 months to repair her left AV valve due to severe regurgitation.
Through it all, Eleanor has shown incredible strength and resilience whilst teaching us the importance of hope and courage. Our family has learned to take each day as it comes while celebrating every milestone along the way.
While the journey hasn’t always been easy, it has also connected us with a wonderful community of heart families who understand the challenges and triumphs that come with living with a childhood heart condition.
How has HeartKids supported your family?
HeartKids has made a difference in our journey by helping us feel less alone. Navigating the uncertainty, challenges, and emotions that come with a child’s heart condition can be overwhelming, but knowing there is an organisation dedicated to supporting families like ours has provided so much comfort and reassurance. Through information, resources and a sense of community, HeartKids has helped us feel understood and supported during some of our most difficult moments.
HeartKids has also given us the gift of connection. They’ve helped us to network and meet other families in similar situations as us, helping us find additional support, understanding and friendship from people who truly know what it feels like to navigate childhood heart disease.
What do you wish more people understood about childhood heart conditions?
I would like people to understand that childhood heart conditions are often lifelong and can affect much more than a child’s physical health—they affect the whole family. Families can face ongoing medical appointments, procedures, uncertainty, and emotional challenges that aren’t always visible to others. While many children with heart conditions are incredibly resilient, the journey can be complex, and support, understanding and compassion can make a meaningful difference.
What would you say to another heart family?
To other heart families, I would say: hold on to hope. The journey can be filled with uncertainty, fear and challenges, but it can also be filled with incredible strength, resilience and love. Take each day as it comes, celebrate the small victories and remember that there is a community of people who understand and are walking a similar path alongside you.
To support families like Eleanor’s, register to attend your local Two Feet & A Heartbeat walk today.
