What is
Childhood-onset Heart Disease (CoHD)?
Childhood-onset heart disease (CoHD) is the term used to describe the range of heart conditions that impact people from birth or develop during childhood.
Some heart conditions are present from birth and are known as congenital heart disease. Others develop later in childhood and are known as acquired heart disease, often following illness or infection.
Condition Types
Aortic Valve Disease
Atrial Septal Defect
Atrio-ventricular Septal Defect (AVSD)
Cardiomyopathy
Coarctation of the Aorta
Cyanotic Congenital disease
Hypoplastic Right Heart Syndrome (HRHS)
Hypoplastic Left Heart Syndrome (HlHS)
Mitral Valve Disease
Persistent Ductus Arteriosus (PDA)
Pulmonary Atresia
Pulmonary Valve Disease
Single Ventricle Pathology
Tetralogy of Fallot (ToF)
Pulmonary Stenosis
Transposition of the Great Arteries (TGA)
Ventricular Septal Defect (VSD)
What We Do
HeartKids is Australia’s only national organisation dedicated to children, young people and families impacted by childhood-onset heart disease (CoHD), providing information, support, connection and advocacy across every stage of their unique journey.
Our Support
CoHD is a lifelong journey, and so is HeartKids’ support. Our teams, many with lived experience, offer emotional and practical care, tailored to milestones like diagnosis, schooling, and adulthood, ensuring families and individuals receive expert guidance at every stage.
Our Impact
For nearly 50 years, HeartKids has ensured that those impacted by childhood-onset heart disease are informed, connected and supported across every life stage. Grounded in lived experience, clinical expertise and meaningful advocacy, HeartKids helps shape research, policy and standards that will improve health outcomes for generations to come.
Our Resources
HeartKids provides trusted information and resources about CoHD. Our resource library is a one-stop-shop for all our CoHD resources, including fact sheets, podcasts, videos and more.
How You Can Help
Give to HeartKids
Your heartfelt gift will bring hope and transformation to over 250,000 Australians living with CoHD. Discover the ways to give and get involved today.
Community Fundraising
Find your passion and get involved in making a lasting difference in the lives of those impacted by CoHD. Discover our engaging community programs today.Â
Get Your Work Involved
Discover how to get your workplace involved in transforming the lives of those living with CoHD today.Â
Volunteer With Us
We greatly appreciate the gift of your time as we unite to support those living with CoHD. Explore the many ways you can volunteer with HeartKids. Â
Latest News and Stories
Raffy’s Story | Sunshine Coast
This October, Raffy and his family will join the HeartKids community at the Sunshine Coast Two Feet & A Heartbeat walk. Raffy was diagnosed with a heart condition just two days after he was born, requiring urgent surgery at three days old and open-heart surgery three months later. Raffy’s mum, Laura, shares their family’s journey, […]...
Kaitlyn’s Story | Townsville
This October, Kaitlyn and her family will be part of the HeartKids Two Feet & A Heartbeat campaign, joining our community walk in Townsville. Kaitlyn’s family’s journey with childhood-onset heart disease began before she was even born, after losing her sister to congenital heart disease in 2011. Kaitlyn was diagnosed with a heart condition at […]...
Ella’s Story | Warrnambool
Ella will join the HeartKids community at the Two Feet & A Heartbeat walk in Warrnambool this October. At 22, Ella shares her story of growing up with a heart condition, finding pride in being a heart kid, and embracing life beyond her diagnosis. Can you tell us about your heart journey? Hello, I’m Ella! […]...
William’s Story | Albany
William and his family will join the HeartKids community at the Albany Two Feet & A Heartbeat walk this October. William was diagnosed with a large Atrial Septal Defect (ASD) at just six weeks old. What followed was a challenging journey involving a Royal Flying Doctor flight, specialist care and two attempts at open-heart surgery. […]...
Arlyn’s Story | Perth
On Sunday, 25 October, the Soong family will be our angel family, sharing Arlyn’s story and leading our Two Feet & A Heartbeat walk in Perth. Arlyn spent her first weeks of life in hospital after an echocardiogram revealed a large Patent Ductus Arteriosus (PDA). At just one month old, she underwent surgery to close […]...
Waiaarangi’s Story | Kiama
This October, Waiaarangi and her family will join the HeartKids community at the Kiama Two Feet & A Heartbeat walk. At just five months old, Waiaarangi was unexpectedly diagnosed with a heart condition after becoming unwell with RSV. Just one month later, she underwent open-heart surgery. Now 2.5 months after her operation, Waiaarangi is thriving […]...
Snowden Family’s Story | Ipswich
On Sunday, 18 October, the Snowden Family will be our angel family sharing their story and leading our Two Feet & A Heartbeat walk in Ipswich. At 16 weeks pregnant, Victoria and Dane were told their baby boy had suspected Hypoplastic Left Heart Syndrome (HLHS), turning what they thought would be a routine scan into […]...
Jackson’s Story | Frankston
This October, Jackson and his family will be part of the HeartKids Two Feet & A Heartbeat campaign, joining our community walk in Frankston. Jackson was diagnosed with congenital heart disease during pregnancy and underwent his first surgery at just 10 days old. Jackson’s mum, Jade, shares his heart story and the support their family […]...
Levi’s Story | Cairns
On Sunday, 25 October, Levi and his family will join the HeartKids community at the Cairns Two Feet & A Heartbeat walk. Levi was unexpectedly diagnosed with a heart condition just three days after he was born. What followed was an emergency transfer to Queensland Children’s Hospital for live-saving open heart surgery and a journey […]...
Audrey’s Story | Adelaide
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 […]...
