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Congenital heart disease occurs due to the heart not developing normally while the baby is in the womb. The defects can involve the walls and valves of the heart, and the arteries and veins near the heart. They can range from simple to complex, and can occur in groups or alone. Some defects require treatment soon after birth, while some require no treatment.

Most people with congenital heart disease will require long-term monitoring of their heart condition and health. Regular monitoring as an adult is crucial, as additional treatment or intervention may be needed that wasn’t necessary during childhood. Without proper cardiac care, these adults are at increased risk for health concerns such as reduced capacity for exercise, arrhythmias and late heart failure.

The impact

Congenital heart disease is one of the leading causes of hospitalisation and death in infants. Around half of babies born with this disease will require surgery or another intervention, with one-third needing these interventions before 12 months of age.1

Globally, nine in every 1,000 babies born are affected by congenital heart disease.

In Australia, eight babies with congenital heart disease are born every day.1

Improved diagnosis and treatment in recent years has resulted in over 90 per cent of babies surviving into adulthood. In Australia, there are around 64,000 children and adults living with congenital heart disease.2

The risk

In most cases, there is no known reason for congenital heart disease. It can arise through a combination of genetic and environmental factors, although family history plays a key role. The risk increases when either parent has congenital heart disease, or when a sibling has it. If a sibling has congenital heart disease and no other family members have it, the risk of it occurring in a future pregnancy is only slightly above the risk in the general population.

Other known risk factors include:

  • The baby having other birth defects, such as Down syndrome
  • Maternal illnesses such as rubella
  • Maternal health factors such as preeclampsia and diabetes
  • Maternal misuse of drugs and alcohol
  • Maternal age

There is no known way to prevent or cure congenital heart disease, although there are treatments available for the different types of defect.

What is HRI doing?

HRI’s Clinical Research Group is conducting research into congenital heart disease, with a focus on young adults living with congenital heart disease. The Group runs one of the largest Adult Congenital Heart Disease Clinics in Australia, at the Royal Prince Alfred Hospital, Sydney. Research conducted by the group includes projects designed to improve quality of life and exercise capacity for people living with congenital heart disease; improve health outcomes in congenital heart disease for young adults, their families and the health system; and establish a unique National Congenital Heart Disease Registry and develop it into a world-class resource with profound translational impact.

References

  1. Australian Institute of Health and Welfare 2019. Congenital heart disease in Australia. Cat. no. CDK 14. Canberra: AIHW.
  2. Heart Kids Australia. Adults Fact Sheet, June 2020.

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