Congenital heart disease is a birth defect, occurring when a baby is born with a heart that hasn’t formed properly. There are many different types of congenital heart disease. Some are uncomplicated and don’t need any treatment, while some can be very serious and require many surgical procedures over several years.
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 don't 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: 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 aren't 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.
Congenital heart disease symptoms
Sometimes congenital heart disease doesn't 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 isn't circulating properly
- their legs, ankles, hands or tummy or the skin around the eyes is swollen
- they don't 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
Congenital heart disease diagnosis
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.
Congenital heart disease treatment
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 don't 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 to seek help
If you have congenital heart disease, it's 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 can't do.
It's 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's also very important for your child to have all their vaccinations.
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.
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Last reviewed: March 2019