What is a congenital heart disease?

Congenital heart disease is a birth defect, occurring when a baby is born with a heart that has not formed properly. There are many different types of congenital heart disease. Some are uncomplicated and do not need any treatment, while some can be very serious and require many surgical procedures over several years.

What are the types of congenital heart disease?

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

A baby is born with the condition when the heart or the large blood vessels around the heart do not form properly. This can affect blood flow to the heart and the rest of the body.

There are many different types of congenital heart disease:

A hole in the heart (atrial or ventricular septal defect): Babies can be born with a hole in the wall between the heart chambers or in one of the blood vessels. This can mean not enough oxygen is pumped around the body.

Problems with the blood vessels: Sometimes the large blood vessels entering the heart are not formed properly and are too narrow, or they are in the wrong position. This affects how the heart works.

Problems with heart valves: If a valve is too narrow (called aortic stenosis), the heart has to work much harder to pump blood through. Sometimes the valve allows blood to leak backwards, putting an extra load on the heart.

Often babies are born with a combination of different defects, such as a hole in the heart, a valve problem, thickening of the heart muscle and problems with the blood vessels.

What are the symptoms of congenital heart disease?

Sometimes congenital heart disease does not cause any symptoms. But it may be suspected in a newborn if:

• their skin, lips or fingernails are sometimes blue (called cyanosis)
• they are breathing very quickly
• their blood is not circulating properly
• their legs, ankles, hands or 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, the symptoms of congenital heart disease include:

• becoming very tired and breathless during exercise
• fainting during or after exercise
• not being able to keep up with friends
• having a lot of chest infections
• not growing very well

How is congenital heart disease diagnosed?

Heart defects in a baby are usually diagnosed during pregnancy or soon after birth. The doctor will do an examination and may order a range of heart tests including an echocardiogram, electrocardiogram, chest x-ray or MRI, tests to measure the oxygen in the blood, or catheterisation.

How is congenital heart disease treated?

A baby or child with congenital heart disease will be treated by a paediatric cardiologist (a heart doctor who specialises in children) and if necessary a paediatric heart surgeon. They may need to keep seeing specialists for the rest of their life.

Some congenital heart problems 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 blood pressure.

Some heart defects can be fixed using cardiac catheterisation, when a thin tube is threaded through the heart and tiny instruments are used to repair the defect.

In more serious cases, heart surgery may be needed. Sometimes a baby can have heart surgery while they are still in the womb. If the defects are very serious, a heart transplant may be the only option.

When should I seek help?

If you have congenital heart disease, it is important to seek medical attention if you develop an infection or are planning to get pregnant.

Living with congenital heart disease

Many babies born with congenital heart disease go on to lead normal lives. However, they will probably need to keep seeing a cardiologist, who will monitor their condition. They may also need treatment from time to time over the years.

Children may need to avoid some strenuous physical activities as they grow up. Your doctor will tell you what they can and cannot do.

It is important for people with congenital heart disease to avoid infections, since this can be very dangerous for their heart. See a doctor immediately if your child develops any sign of infection, such as a chest infection.

Ensure they know how important it is to keep their teeth and mouth clean, because bacteria can spread from the mouth to the heart.

It is also very important for your child to have all their vaccinations.

More information

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