Congenital Heart Disease

What is congenital heart disease?

Congenital heart disease is an abnormality of the heart that you are born with. In some cases, the condition is diagnosed when the baby is still developing in the womb, but in most cases the problem is not discovered until after the baby is born.

There are many different types of congenital heart disease. For example, the heart’s valves may not be properly formed or there could be holes between the chambers of the heart.

Congenital heart disease affects about 1 in every 145 births. For more than half of these babies, the condition is a minor problem which either doesn’t need any treatment, or can be successfully corrected with surgery after they are born.

Other conditions are more serious and sadly, some children with congenital heart disease do not survive. However, thanks to advances in early diagnosis and treatment, most children will grow up to become adults and lead full and active lives.

What causes congenital heart disease?

In most cases, something has gone wrong in the early development of the foetus.  Some heart conditions are due to faulty genes or chromosomes. Often, we don’t understand why the baby’s heart hasn’t developed normally.

How is the condition discovered?

Many heart problems are picked up when the mother has an ultrasound scan during pregnancy, but sometimes they are not detected until after the baby has been born. Some conditions may not be discovered until the child is older or even an adult.

What treatment is available?

Treatment depends on the type and severity of the condition. Some children won’t require any treatment, while others may need medication or heart surgery. There are also other new techniques and procedures that, in some cases, can be done instead of surgery.

Read about our work to help families affected by congenital heart disease.

What support can I get if my baby is born with a heart condition?

Finding out that your child has a congenital heart condition can be very distressing, but there are health professionals and groups who can support you through this time.

If your child is being treated at a specialist centre or hospital, ask if there is a cardiac liaison nurse or social worker you could speak to. They can provide you with practical help and reassurance, and direct you to other useful organisations for further support. Your cardiac liaison nurse will often stay in touch and be available to answer your questions even after your child has been discharged from hospital.

You can also get help and support from groups such as Action for Sick Children, Children's Heart Federation and the GUCH Patients Association. See our Children's helplines information sheet for details of these and other organisations.

Resources and additional information

Children with congenital heart disease - a DVD to help parents come to terms with their child's condition. Featuring family case studies and practical guidance on common concerns.

Children's helplines information sheet - a list of organisations that can offer advice, support or funding.

Children's heart hospitals information sheet - a list of hospitals in the UK with specialist children's heart centres.

Endocarditis information sheet - information about endocarditis, a rare but serious infection that people with congenital heart disease are more prone to.

Operation Fix-it - a book designed to prepare 7-11 years olds for a hospital visit.

Understanding your child's heart  - a series of booklets which provides information on different congenital heart conditions, their causes and treatments, as well as where to go for more support. Current titles are: Aortic stenosis, Coarctation of the aorta, Double inlet ventricle, Hypoplastic left heart, Large ventricular septal defect, Pulmonary atresia, Pulmonary stenosis, Single ventricle circulation, Tetralogy of Fallot, Transposition of the great arteries, Tricuspid atresia.

We'll tell you what we want - a DVD for teenagers growing up with heart problems.

yheart.net/meet - our website for young people with heart conditions. 

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