Congenital heart disease
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How many Australians are living with congenital heart disease?
In Australia, an estimated 68,200 children and adults live with congenital heart disease.
In 2023–24, there were around 7,100 hospitalisations in Australia where congenital heart disease was the principal diagnosis.
In 2024, congenital heart disease caused 59 deaths in infants aged under one year, equivalent to 6.2% of all infant deaths.
What is congenital heart disease?
Congenital heart disease is a general term for any defect of the heart, heart valves or central blood vessels that is present at birth.
It can take many forms, such as holes between the pumping chambers of the heart, valves that do not open or close properly and narrowing of major blood vessels such as the aorta and pulmonary artery. Congenital heart disease can range from simple to complex, and more than one anomaly can occur in the same heart.
Diagnosis usually occurs within the first month of life. Common symptoms include bluish lips, fingers and toes, breathlessness or trouble breathing, low birth weight, difficulty feeding and gaining weight, and chest pain.
Most congenital heart disease is multifactorial and arises through combinations of genetic and environmental factors. Some of the known risk factors include a family history of congenital heart disease, maternal illnesses such as rubella (German measles), misuse of alcohol, illicit drugs and medications, and maternal health factors such as preeclampsia and poorly controlled diabetes.
The National Strategic Action Plan for Childhood Heart Disease aims to reduce the impact of congenital heart disease and other childhood heart diseases in Australia. It outlines priority areas and actions to help people with Childhood Heart Disease live longer, healthier and more productive lives (Department of Health 2019).
How many Australians are living with congenital heart disease?
In 2024, the first results were published from the National Australian Congenital Heart Disease Registry (Nicholson et al. 2024). This registry aims to capture a comprehensive cohort of people living with congenital heart disease. It currently includes data from 68,200 people. The estimated yearly prevalence based on this registry is 6 in 1,000 births. The difference between this estimate, and global estimates (9.4 in every 1,000 live births during the period 2010–2017), may be due to incomplete data capture, which will improve over time, rather than lower prevalence in Australia (Liu et al. 2019, Nicholson et al. 2024).
Ventricular septal defect was the most commonly reported congenital heart disease, followed by atrial septal defect and patent ductus arteriosus.
Ventricular septal defect: a hole in the muscle wall between the right and left ventricles.
Atrial septal defect: a hole in the muscle wall between the right and left atria.
Patent ductus arteriosus: where the ductus arteriosus, the connection between the aorta and pulmonary artery, fails to close after birth.
Tetralogy of Fallot: a condition that consists of 4 heart anomalies: ventricular septal defect, a narrowing of the outflow tract into the pulmonary artery, an enlarged aorta and thickening of the muscle wall of the right ventricle.
Transposition of great vessels: a condition that is usually characterised by the aorta arising from the right ventricle and the pulmonary artery from the left ventricle.
Coarctation of the aorta: narrowing of the aorta.
Aortic stenosis: obstruction of the aorta. This can be due to a narrowing of the aorta or a problem with the aortic valve.
Hypoplastic left heart syndrome: where the left ventricle is small and functionally inadequate.
Pulmonary atresia: a condition in which there is no pulmonary valve and no blood flow to the pulmonary artery.
Hospitalisations
In 2023–24, there were around 7,100 hospitalisations in Australia where congenital heart disease was the principal diagnosis – a rate of 26 hospitalisations per 100,000 population.
Age and sex
In 2023–24, where congenital heart disease was recorded as the principal diagnosis, hospitalisation rates:
- were similar for males and females after adjusting for differences in the age structure of the populations
- were highest for infant boys and girls (577 and 494 per 100,000 population), followed by boys and girls aged 1–4 (40 and 46 per 100,000 population).
Unlike many other cardiovascular conditions, the number and rate of hospitalisation for congenital heart disease declines with age (Figure 1).
Figure 1: Congenital heart disease hospitalisation rates, principal diagnosis, by age and sex, 2023–24
The bar chart shows congenital heart disease hospitalisation rates were highest among those aged under 1 year. Rates among those aged over 1 year were substantially lower.
| Age group (years) | Male | Female | Persons |
|---|---|---|---|
| <1 | 577.4 | 493.6 | 537.0 |
| 1–4 | 39.6 | 45.9 | 42.7 |
| 5–14 | 16.9 | 15.2 | 16.1 |
| 15–24 | 10.6 | 11.4 | 11.0 |
| 25–64 | 22.7 | 20.9 | 21.8 |
| 65+ | 21.7 | 20.9 | 21.4 |
Source:
AIHW National Hospital Morbidity Database.
Adults with congenital heart disease
Advances in paediatric cardiac care mean that people with congenital heart disease are now living longer, and the burden of disease is shifting from early childhood into the adult population (Celemajer et al. 2016).
Patients with complex and severe congenital heart disease will continue to require specialist treatment throughout their life. Often, they also require management of other health and welfare issues, including for family planning and pregnancy, lifestyle choices, dietary strategies, work choices and physical limitations.
Trends
Between 2000–01 and 2023–24 the number of hospitalisations with congenital heart disease as a principal diagnosis increased from 4,000 to 7,100.
The age-standardised hospitalisation rate remained steady between 2000–01 and 2019–20. However, the rate increased 26% overall between 2019–20 and 2023–24 (increasing 28% among males and 23% among females). This increase may reflect a combination of post-pandemic service rebound and improved survival leading to a growing adult congenital heart disease population.
For rates see the supplementary data tables.
Variation by priority population groups
In 2023–24, after adjusting for differences in the age structure of the populations, congenital heart disease hospitalisation rates were similar across socioeconomic and remoteness areas.
For information on First Nations people, see First Nations people. Data disaggregated by priority population groups are available in the supplementary data tables.
Procedures
About half of all babies born with congenital heart disease require surgical or catheter-based interventions to correct any defect, with one-third needing these interventions in the first year of life (Blue et al. 2012; Leggatt 2011).
Where congenital heart disease was the principal and/or additional diagnosis, there were almost 2,400 surgical procedures conducted in Australian hospitals for closure of an atrial septal defect in 2023–24, 430 for closure of ventricular septal defect and 606 for closure of patent ductus arteriosus:
- procedure rates for infants aged under one year were 91 per 100,000 for closure of atrial septal defect, 100 per 100,000 for ventricular septal defect and 117 per 100,000 for patent ductus arteriosus in 2023–24
- most procedures for patent ductus arteriosus and ventricular septal defect were among children aged under 5 (72% and 82%, respectively)
- procedures for atrial septal defect were spread more evenly across ages, with 15% among children aged under 5 years, and 56% among adults aged 45 and over
- trends in procedure rates have changed little over the last decade.
Diagnostic and treatment options for congenital heart disease
Echocardiography: an ultrasound of the heart. This test is non-invasive and can be conducted before birth.
Pulse oximetry: a non-invasive test that measures the oxygen levels in the blood to see how efficiently the heart is pumping oxygen to the rest of the body.
Medications: often used for mild congenital heart defects, especially those found later in childhood or in adulthood. Medications can help the heart work more efficiently by lowering blood pressure, regulating the heartbeat or lowering the amount of fluid in the chest.
Cardiac catheterisation: a thin flexible tube is inserted into an artery in the leg and moved towards the heart to measure blood pressure and flow. Sometimes used in conjunction with imaging procedures including contrast studies and X-ray. Also a form of treatment to stretch narrowed vessels and valves, implant stents or close a hole.
Corrective surgery: usually reserved for more complex congenital heart conditions. There are many different procedures. Surgery is often undertaken in the first year of life.
Heart transplant: total replacement of the heart muscle.
Compassionate care: an alternative to surgery, often using palliation and other forms of end-of-life care.
Deaths
In 2024, congenital heart disease was the underlying cause of 152 deaths (0.1% of all deaths) in Australia – a rate of 0.6 deaths per 100,000 population.
Congenital heart disease is a leading cause of death among infants (AIHW 2024) and was the cause of 59 deaths in infants aged under one year in 2024, equivalent to 6.2% of all infant deaths.
Age and sex
In 2024, 74 males and 78 females died as a result of congenital heart disease, equivalent to age-standardised rates of 0.6 per 100,000 population. Of these:
- 39% were aged under one year
- 11% were aged 1–24
- 28% were aged 25–64
- 22% were aged 65 or over.
Trends
Both the number and rate of congenital heart disease deaths declined between 1980 and 2024:
- the number of congenital heart disease deaths declined by 51%, from 310 to 152
- the age-standardised congenital heart disease death rate declined 68%, from 1.9 per 100,000 population to 0.6 per 100,000 population.
In 1987, 71% of congenital heart disease deaths occurred in children aged under 5 years. By 1997, this figure had fallen to 55%, falling further to 50% in 2007 and 43% in 2024.
Treatment improvements and an increase in the number of terminations of pregnancies after antenatal diagnosis have been suggested as factors that have contributed to the decrease in mortality rates (Leggatt 2011).
Variation by priority population groups
In 2024, the age-standardised congenital heart disease death rate was 1.8 times as high in the lowest socioeconomic areas compared with the highest. However, estimates are based on small numbers and should be interpreted with caution.
For information on First Nations people, see First Nations people. Data disaggregated by priority population groups are available in the supplementary data tables.
AIHW (Australian Institute of Health and Welfare) (2024) Deaths in Australia, AIHW, Australian Government, accessed 12 September 2024.
Blue GM, Kirk EP, Sholler GF, Harvey RP and Winlaw DS (2012) Congenital heart disease: current knowledge and causes and inheritance, Medical Journal of Australia, 197:155–159, doi:10.5694/mja12.10811.
Celermajer D, Strange G, Cordina R, Selbie L, Sholler G, Winlaw D, Alphonso N, Justo R, Nicholae M, Kasparian N, Weintraub, RG, Cheung M, Grigg LE, Brizard CP, Wheaton G, Disney P, Stewart S, Bullock A, Ramsay J, Gentles T and d’Udekem Y (2016) ‘Congenital heart disease requires a lifetime continuum of care: a call for a regional registry’, Heart, Lung, and Circulation, 25:750–754, doi:10.1016/j.hlc.2016.03.018.
Department of Health (2019) Beyond the heart: transforming care. National Strategic Action Plan for Childhood Heart Disease, Department of Health, Australian Government, accessed 12 September 2024.
Leggatt S (2011) Childhood heart disease in Australia. Current practices and future needs, HeartKids Australia, Sydney.
Liu Y, Chen S, Zuhlke L, Black GC, Choy M, Li N and Keavney BD (2019) Global birth prevalence of congenital heart defects 1970–2017: updated systematic review and meta-analysis of 260 studies, International Journal of Epidemiology, 48:455–463, doi:10.1093/ije/dyz009.
Nicholson C, Strange G, Ayer J, Cheung M, Grigg L, Justo R, Maxwell R, Wheaton G, Disney P, Yim D, Stewart S, Cordina R, Celermajer DS (2024) A national Australian Congenital Heart Disease registry; methods and initial results, International Journal of Cardiology Congenital Heart Disease, Volume 17, doi:10.1016/j.ijcchd.2024.100538.