Congenital Heart Disease

What is congenital heart disease?

Congenital means 'from birth’. Congenital heart disease is an abnormality of the heart that has been present from birth. 

The heart or its vessels or valves may not be properly formed or there could be holes between the chambers of the heart.

These may range from simple problems with potentially minor consequences to complex abnormalities with serious outcomes. 

Minor defects may not require any treatment initially but many may need medical treatment or surgery shortly after birth or later on in life.

In the UK there are approximately 4,600 babies born with congenital heart disease each year (one in every 145 births). 

Sadly some children with congenital heart disease will not survive.  However, most will grow up to lead full and active lives, thanks to heart research and advances in diagnosis and treatments.

What causes congenital heart disease?

In most cases of congenital heart disease the cause is unknown. 

Some congenital defects relate to disease in the mother such as rubella (German measles) diabetes or a viral infection. 

Drugs taken in pregnancy such as some prescribed for epilepsy, or illegal drugs or alcohol are known to cause certain congenital heart conditions. Smoking is thought to be a risk factor. 

Some congenital heart conditions are genetic (which means they are passed from a parent to a child through a gene). 

High levels of congenital heart conditions are found in chromosomal disorders such as Down’s syndrome.

How is congenital heart disease discovered?

Many congenital heart conditions can be picked up when the mother has a routine ultrasound scan during pregnancy. 

If the baby’s heart is not developing normally, doctors may recommend a more specialist foetal echocardiogram. This allows doctors to see the baby’s heart in more detail than the routine ultrasound.

Sometimes congenital heart disease is not detected until after the baby has been born. The baby may have a heart murmur (an unusual sound heard through a stethoscope), look 'blue' or may be breathless and unable to feed.

Most congenital heart conditions are discovered in babies and children and are treated if necessary. However some conditions may not be discovered until the child is older or even into adulthood.

What happens next?

Treatment for congenital heart disease depends on the type and severity of the condition. A cardiologist (doctor who specialises in heart disease) decides which tests are needed.

When all the test results are available the cardiologist will discuss the sort of treatment needed. This can range from no treatment to complex open heart surgery. With new techniques, more and more surgery is done without the need for complex surgery leaving wounds.

What is Endocarditis?

Endocarditis is a rare but serious condition where the inner lining of the heart – most commonly one of the heart valves – becomes infected.

It affects about 1,500 people a year in the UK. Most of these people already have some form of abnormality in the structure of the heart.

Most people who have congenital heart disease are at higher risk of endocarditis. This includes conditions where the heart disease has been treated or repaired with surgery. However people with particular types of congenital heart disease – atrial septal defect (on its own), repaired ventricular septal defect and repaired patent ductus arteriosus – are not at a higher risk of getting endocarditis.

Up until recently, people at risk of endocarditis were advised to take antibiotics before having dental treatment and some other procedures. However all the latest research has been reviewed and it has been concluded that it is very unlikely that there is any benefit from taking antibiotics before having dental treatment or certain other procedures. In other words, taking antibiotics before having dental treatment or other tests will not reduce the risk of developing endocarditis.

For more information on endocarditis and how to obtain an endocarditis warning card please see our information sheet Endocarditis.

Further information for parents and young people

Find out more information about specific Congenital Conditions please see our Any Questions section

You can also order our free DVD 'We'll Tell You What We Want' aimed at teenagers growing up with heart problems.

Parents of children with congenital heart disease may find useful organisations on our fact sheet Children's helpline and funding

If you have congenital disease and are planning on becoming pregnant see our information sheet Complex heart disease and pregnancy

GUCH
A national charity providing support and advice to adults and young people born with a heart condition.
Website: www.guch.org.uk
Helpline: 0800 854759 (at weekends calls go to an answerphone)

Children's Heart Federation
Providing free advice and information related to children's heart conditions
Website: www.childrens-heart-fed.org.uk
Helpline: 0808 808 5000 (9.30am-4.30pm Monday to Friday)

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