Congenital heart disease
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.
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.
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
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.
Support for parents and families
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.
Resources and additional information
Children's helplines information sheet for details of
organisations including Action for Sick Children,
Federation and GUCH Patients Association.
Our publications for parents
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
Endocarditis information sheet - information about
endocarditis, a rare but serious infection that people with
congenital heart disease are more prone to.
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. Titles include:
Coarctation of the aorta,
Double inlet ventricle, Hypoplastic
Large ventricular septal defect,
Pulmonary atresia, Pulmonary
Single ventricle circulation,
Tetralogy of Fallot,
Transposition of the great arteries, Tricuspid
Publications for children and young people