What is congenital heart disease?

'Congenital' means a health condition that starts during pregnancy or birth. Congenital heart disease is a type of heart problem present from birth. It happens when a baby is born with a heart that did not form properly.

Congenital heart problems can change the flow of blood and the way the heart works.

There are many different types of congenital heart disease. Some do not need any treatment, while others can be very serious and may require one or more surgeries over several years.

What are the types of congenital heart disease?

Congenital heart disease is the most common birth difference in Australia. It affects about 1 in 100 babies.

A baby can be born with congenital heart disease if the heart has not formed properly while the baby was growing inside the uterus (womb).

A problem with the heart or the large blood vessels around the heart can be serious. It can affect blood flow to the heart and to the rest of the body.

There are different types of congenital heart disease. These include:

• A 'hole' in the heart (atrial or ventricular septal defect) — Babies may be born with a hole in the wall between the heart chambers or in one of the blood vessels. This can lead to not enough oxygen-rich blood being pumped around the body.
• Problems with the blood vessels — the large blood vessels that enter and exit the heart may not be formed properly. They might be too narrow, or in the wrong position. This can affect the way the heart works.
• Problems with the heart valves — If a valve is too narrow (for example, as in aortic stenosis), the heart has to work much harder to pump blood through the valve. In other cases, the valve does not work properly, and may allow blood to leak backwards. This can also lead to an extra load on the heart.

Babies born with one type of congenital heart problem often have another type at the same time. For example, they might have a hole in their heart as well as a valve problem.

Learn more about the heart and the circulatory system.

What are the symptoms of congenital heart disease?

Sometimes congenital heart disease does not cause any symptoms.

It may be suspected from these signs in a newborn:

• their skin, lips or fingernails are pale grey or blue (called cyanosis)
• they are breathing very quickly
• their legs, ankles, hands, tummy or the skin around the eyes is swollen
• they do not feed or gain weight well
• the doctor can hear a heart murmur

In older children, symptoms of congenital heart disease may include:

• becoming very tired and short of breath during exercise
• fainting during or after exercise
• not being able to keep up with friends during physical activity
• having a lot of chest infections
• growing more slowly than expected

What causes congenital heart disease?

Congenital heart disease is present from birth. The cause of congenital heart disease isn't always clear, but risk factors include:

• infections during pregnancy, such as rubella
• alcohol or drug use during pregnancy
• smoking during pregnancy
• genetic differences, such as Down syndrome
• a family history of congenital heart disease

When should I see my doctor?

If you have congenital heart disease, there are times when you should get medical advice.

It's important to seek medical attention if you develop symptoms of an infection, such as a chest infection. Some infections can cause damage to the heart, and this can be especially serious if you already have a heart condition.

If you are planning a pregnancy, you should see your doctor first. Pregnancy and labour can put a lot of stress on your heart, so careful planning and care during your pregnancy is important.

It is also important to let your dentist know if you have a heart condition, as dental procedures can affect the heart too.

How is congenital heart disease diagnosed?

Heart problems in babies are usually diagnosed during pregnancy or soon after birth. Your doctor will examine your baby and may refer you for a range of heart tests, such as:

• echocardiogram
• electrocardiogram
• chest x-ray
• MRI scan

Other tests may measure the oxygen levels in your blood. A test called a cardiac catheterisation can show if the blood vessels are too narrow or blocked.

How is congenital heart disease treated?

Some congenital heart differences do not need any treatment. For example, small holes in the heart usually fix themselves as the child grows up. Sometimes medicines may be used to improve how the heart works or to lower your blood pressure.

Some heart problems can be fixed during cardiac catheterisation. This is when a thin tube is threaded through the heart and tiny instruments are used to repair the problem.

In more serious cases, heart surgery may be needed. If the condition is very serious, a heart transplant may be the best option. This involves replacing the heart with one donated by someone who has died.

If you have congenital heart disease, you may need regular check-ups with a heart specialist for life.

Who will look after my baby with congenital heart disease?

A baby or child with congenital heart disease will usually be treated by a paediatric cardiologist. This is a heart doctor who specialises in caring for children.

If needed, your child may also be treated by a paediatric heart surgeon. Sometimes a baby can have heart surgery while they are still in the womb.

Living with congenital heart disease

Many babies born with congenital heart disease go on to lead normal lives. Regular check-ups with a cardiologist to identify and treat any problems early can help maximise their quality of life.

As your child grows up, they may need to avoid some strenuous physical activities. Your doctor will advise you on which activities they should avoid.

What are the complications of congenital heart disease?

It's important for people with congenital heart disease to reduce their chance of infections. Some infections can spread to the heart (such as infective endocarditis) and can be very dangerous for the heart in people with heart problems.

See a doctor immediately if you develop any signs of infection, such as a chest infection, so they can advise you and treat the infection if needed.

It's important to keep your teeth and mouth clean, because bacteria can spread from your mouth to your heart.

Your doctor may recommend antibiotics before dental surgery or a deep clean of your teeth to reduce the chance of infection. If you have congenital heart disease, speak to your doctor, heart specialist or dentist before you have a dental procedure.

Vaccinations are also important for reducing your risk of catching infectious diseases.

Can congenital heart disease be prevented?

It's impossible to prevent all cases of congenital heart disease, but there are some things you can do during pregnancy to reduce the risk:

• Avoid alcohol and drug
• Quit smoking.
• Have the recommended vaccinations (including rubella).
• Check that any medicines you take are safe for pregnancy.
• Talk to your doctor about managing any health conditions before and during pregnancy.

Resources and support

HeartKids provides support and information for children, teens and adults with congenital heart disease as well as people who develop a heart condition during childhood. You can call their helpline on 1800 432 785.

UpBeat is an app for teenagers aged 15 to 19 with childhood heart disease. It is designed to empower young people and help them learn to manage their own healthcare needs, as they transition from paediatric (child) healthcare to adult healthcare.

You can also call the healthdirect helpline on 1800 022 222 (known as NURSE-ON-CALL in Victoria). A registered nurse is available to speak with you 24 hours a day, 7 days a week.

Languages other than English

HeartKids has a range of resources and stories from people with lived experience, available in several community languages.

Parent Line is a free telephone counselling and support service for parents and carers. They offer parenting support for parents from culturally diverse backgrounds.

Information for Aboriginal and/or Torres Strait Islander peoples

HeartKids has resources for Aboriginal and/or Torres Strait Islander people with congenital heart disease.

Find an Aboriginal Community Controlled Health Organisation (ACCHO) or Affiliate near you.