Congenital heart disease

What is congenital heart disease?

Congenital means a defect that you're born with, so if a heart condition develops in the womb, it's called a congenital heart defect.

There are many different ways that the heart can be affected. For example, there may be a hole between the heart's chambers (sometimes called a 'hole in the heart'). The baby's heart valves may be narrower than usual, or the heart may not develop properly, making it hard to pump blood around the body.

What causes congenital heart disease?

It's often difficult to explain exactly why a baby is born with a heart defect, but some factors can increase the risk:

• A family history of congenital heart disease

• Faulty genes or chromosomes

• Having diabetes, which is badly controlled, or certain infections during pregnancy

• Taking certain medication during pregnancy

• Drinking or smoking during pregnancy

Congenital heart disease symptoms

Babies and children with congenital heart disease may experience the following symptoms:

• Fast heartbeat

• Breathing problems

• Swollen limbs

• Feeling very tired

• Blue colour to the skin (called cyanosis)

• Chest pain

• Babies feeding poorly

Detecting congenital heart disease

It's often possible to detect congenital heart defects at the 20-week ultrasound scan during pregnancy. In these cases, you'll be referred to a specialist who'll give you further information about your baby's condition and what it means to your child in the long-term.

Sometimes heart defects can be treated in the womb (in-utero), and ongoing monitoring and treatment may also be needed after your baby is born.

Heart defects aren't always found during pregnancy. If your baby or child develops symptoms of congenital heart disease, they'll need to have a physical examination and other tests to diagnose the condition. These might include:

• Electrocardiogram (ECG) – To measure the heart's electrical activity

• Echocardiography (echo) – To monitor the inside of the heart and it’s valves

• Chest X-ray – To look at possible problems in the heart and lungs

• Other tests – These may include a pulse oximetry to measure the amount of oxygen in the blood and a cardiac catheterisation that looks at how the blood is pumping through the heart

Congenital heart disease treatment

Treatment for congenital heart disease varies, depending on the condition and how serious it is. Many genetic heart problems are mild and don't need treatment, but it's likely that regular, ongoing monitoring will still be needed.

In more serious cases, a wide range of medication or surgery may be needed. This could include:

• Medication – Including diuretics to ease breathing by removing excess bodily fluid, and other medicines to slow the heartbeat

• Balloon valvuloplasty – A procedure that stretches or widens a narrowed heart valve by inflating a balloon attached to a catheter

• Open heart surgery – May be recommended if balloon valvuloplasty hasn't been successful

• Surgery to restore blood flow through the aorta – This might involve widening the aorta with a balloon or metal tube (called a stent) or creating a 'bypass' around the blockage

• Arterial switch – Surgery that can reattach the arteries into a better position

Congenital heart disease complications

People with congenital heart disease are at a higher risk of developing other problems, including:

• Developmental issues, like a delay in walking or talking

• Learning difficulties

• Respiratory tract infections, like pneumonia that can cause coughing, wheezing and chest problems

• Endocarditis, an infection that affects the heart's lining or valves and can lead to serious heart damage

• Pulmonary hypertension, when there's high blood pressure in the pulmonary arteries (the blood vessels that supply the lungs)

• Problems with heart rhythm when the heart beats too fast or too slow

• Heart failure when the heart can't pump blood around the body efficiently

• Blood clots forming inside the heart which can lead to pulmonary embolism or stroke

Reducing the risk of congenital heart disease during pregnancy

If you're pregnant it's a good idea to follow these steps to help reduce the risk of congenital heart defects:

• Avoid drinking alcohol

• Avoid taking medication if possible

• Check your vaccinations for rubella and flu are up to date

• Take a supplement of 400 micrograms of folic acid in the first 12 weeks of pregnancy, which lowers the risk of several types of birth defects, including congenital heart disease

• Take steps to control and improve diabetes if you're diabetic