Congenital heart disease
Key facts
- Congenital heart disease is a birth defect.
- There are different types of congenital heart disease.
- Often babies are born with one or more defects at the same time.
- It’s important for people with congenital heart disease to avoid getting infections.
What is a congenital heart disease?
Congenital heart disease is a birth defect. It happens when a baby is born with a heart that has not formed properly. Congenital heart defects can change the flow of blood and the way your heart works.
There are many different types of congenital heart disease. Some are uncomplicated and do not need any treatment. Others can be very serious. These might need many visits to hospital for surgery over several years.
What are the types of congenital heart disease?
Congenital heart disease is the most common birth defect in Australia. It affects about 1 in 100 babies.
‘Congenital’ is an illness or condition is present at the time of birth.
A baby can be born with congenital heart disease if its heart has not formed properly. This happens when the baby is growing inside the uterus (womb).
A problem with the heart or the large blood vessels around your heart can be serious. It can affect blood flow to your heart and to the rest of your body.
There are 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 that not enough oxygen is pumped around the body.
Problems with the blood vessels: Sometimes the large blood vessels that go into the heart are not formed properly. They might be too narrow, or in the wrong position. This affects how your heart works.
Problems with the heart valves: If a valve is too narrow (called aortic stenosis), your heart has to work much harder to pump blood through the valve. Sometimes the valve does not work properly. It can let blood leak backwards. This can also lead to an extra load on the heart.
Often babies are born with one or more defects at the same time. They might have a hole in their heart and a valve problem. Or they might have thickening of the heart muscle as well as problems with the blood vessels.
What are the symptoms of congenital heart disease?
Sometimes congenital heart disease does not cause any symptoms.
It may be suspected in a newborn if:
- their skin, lips or fingernails are pale grey or blue (called cyanosis)
- they are breathing very quickly
- their blood is not circulating properly
- 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, the symptoms of congenital heart disease include:
- becoming very tired and short of breath 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
CHECK YOUR SYMPTOMS — Use the Symptom Checker and find out if you need to seek medical help.
What causes congenital heart disease?
Congenital heart disease is present from birth.
When should I see my doctor?
If you have congenital heart disease, there are times when you need to get medical advice. It’s important to seek medical attention if you develop an infection. Some infections can cause damage to the heart. This can be especially serious if you already have a heart condition.
See a doctor immediately if you develop any sign of infection, such as a chest infection.
If you are planning to get pregnant you should seek medical advice. Careful planning and care during your pregnancy is needed. Pregnancy and labour can put a lot of stress on your heart. You will need to be monitored closely while pregnant.
How is congenital heart disease diagnosed?
Heart defects in a baby are usually diagnosed during pregnancy or soon after birth. Your doctor will examine you and may order a range of heart tests.
The tests might be an:
Other tests may measure the oxygen in your blood. A test called a catheterisation can show if the blood vessels are too narrow or blocked.
How is congenital heart disease treated?
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 your blood pressure.
Some heart defects can be fixed using cardiac catheterisation. This is when a thin tube is threaded through the heart. Tiny instruments are used to repair the problem.
In more serious cases, heart surgery may be needed. If the defects are very serious, a heart transplant may be the only option. This is when the damaged heart is replaced with a healthy heart from someone who has died.
If you have congenital heart disease you may need to see heart specialist for the rest of your life.
Who will look after my baby with congenital heart disease?
A baby or child with congenital heart disease will 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. However, they will probably need to keep seeing a cardiologist. They may also need treatment from time to time over their lifetime.
As your child grows up, they may need to avoid some strenuous physical activities. Your doctor will tell you what they can and cannot do.
How can I avoid complications of congenital heart disease?
It’s important for people with congenital heart disease to avoid getting infections. An infection can be very dangerous for your heart.
People with heart defects can be at risk of getting ‘infective endocarditis’. This is when bacteria get into the heart and cause infection.
See a doctor immediately if you develop any sign of infection, such as a chest infection.
It’s important to keep your teeth and mouth clean, because bacteria can spread from your mouth to your heart.
Sometimes antibiotics are needed before dental surgery or before the deep cleaning of teeth. Speak to your doctor or heart specialist before you have any teeth removed.
It’s also very important to have all your vaccinations.
Resources and support
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.
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 24 hours a day, 7 days a week.
Learn more here about the development and quality assurance of healthdirect content.
Last reviewed: August 2023
