We support families who have a child with heart disease by:
- Employing Family Support Coordinators in each of the major children’s hospitals throughout Australia. Watch the story video of Sherrie McDonald, one of our Victorian Family Support Coordinators and Abby, her Heart Child.
- Running Activities like Teen Camps for teenagers affected by Childhood Heart Disease around Australia.
- Assisting families with travel and accommodation needs.
In general, few people are aware of Congenital Heart Disease (CHD) – what it is and how serious a problem it is.
Many people would remember the term “Blue Baby” and “Hole in the Heart Baby” – these are conditions that describe CHD which, in reality, covers a wide range of conditions. At HeartKids, we also include children who may acquire heart conditions such as Rheumatic Fever and Kawasaki Disease – therefore we often refer to CHD as meaning Childhood Heart Disease.
Some startling statistics:
- Every day, 6 babies are born with heart defects. That is over 2000 every year in Australia!
- CHD is one of the greatest killers of infants under the age of one.
- Approx half of children diagnosed with heart disease require surgery to correct the defect,
- Each week more than 4 Australians pass away as a result of a Congenital Heart condition.
- It is estimated that 32,000 children (under 18 years of age) are currently living with CHD in Australia.
- Some children acquire heart conditions during childhood, e.g. cardiomyopathy, Kawasaki disease or as a result of rheumatic fever.
- A disproportionate number of indigenous children suffer from acquired heart disease – often as a result of rheumatic fever, which is prevalent in many communities.
HeartKids help support the research projects looking to unlock the mysteries of Childhood Heart Disease.
The specific focus and aim of these has been to:
- Reduce mortality and/or morbidity from CHD
- Reduce the incidence of CHD
- Develop preventative measures to reduce CHD
- Improve early detection of CHD
- Understand the causes and disease processes of CHD
- Improve the treatments and management of CHD
- Gain a better understanding of the consequences of CHD
- and its treatment including the neurological, cognitive or social impacts on children affected by CHD and how these issues may be addressed.