This October, Caitlin and her family will join the HeartKids community at the Brisbane Two Feet & A Heartbeat walk.
Her father Ciaran shares the story of his 10-year-old daughter, and their family’s experience of diagnosis, open-heart surgery and life with childhood-onset heart disease (CoHD).
Tell us about Caitlin’s heart journey
Our family was introduced to the world of childhood heart disease when Caitlin was born and she was diagnosed with Ebstein’s Anomaly.
Over the last 10 years, we have received monitoring support and guidance from our cardiac professionals to track and support Caitlin as she has grown. Recently, our team recommended that Caitlin needed open-heart surgery to repair the valves in her heart.
Like many heart families, we experienced the uncertainty, fear and emotional highs and lows that come with major surgery and recovery. While the journey has had its challenges, we are incredibly grateful for the care and support that our medical team has provided Caitlin to recover and set her up to thrive in the future.
How has HeartKids supported your family?
HeartKids has reminded us that we are not alone. Knowing there is an organisation that understands what heart families go through, provides trusted information and connects families with support has been incredibly reassuring.
It has helped us feel part of a community that understands the unique challenges of raising a child with a congenital heart condition.
What do you wish more people understood about childhood heart conditions?
Many people are surprised to learn that congenital heart disease is one of the most common birth defects, and that its impact often extends well beyond surgery.
Even when children look healthy, they may continue to face ongoing medical appointments, uncertainty and long-term health considerations. Families carry those experiences with them every day, and awareness, understanding and compassion can make a real difference.
What would you say to another heart family?
You are stronger than you realise, even on the days when it doesn’t feel that way.
Take each step as it comes, lean on the support from medical teams, HeartKids and the people around you, and don’t be afraid to ask for help.
There is a community of heart families who understand your journey, and while the road may not be easy, you do not have to walk it alone.
To support families like Caitlin’s, register to attend your local Two Feet & A Heartbeat walk today.
