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Great Ormond Street Hospital for Children NHS Foundation Trust: Information for Families
Congenital heart disease
This information sheet from Great Ormond Street
Hospital explains the causes, symptoms and treatment
of congenital heart disease and where to get help.
Congenital heart disease describes
a problem with the heart’s structure
and function due to abnormal heart
development before birth. Congenital
means present at birth.
The normal heart
The heart is a pump consisting of four
chambers. There are two upper collecting
chambers and two bottom pumping
chambers.
The left-hand side of the heart receives
oxygenated blood from the lungs and
then pumps this to the body for use.
There are one-way valves between the
upper and lower chambers of the heart
and at the beginning of the major arteries
to the body and lungs.
There is usually a solid wall of tissue
between the walls of the upper and lower
chambers. The heart has its own electricity
supply that causes it to contract and relax
(squish) pumping blood rhythmically to
the body.
What causes congenital
heart disease?
Aorta
Pulmonary
artery
Left
atrium
Mitral
valve
Right
atrium
Tricuspid
valve
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The right-hand side of the heart collects
the deoxygenated (used) blood from the
body and then pumps this back around
into the lungs for re-oxygenation.
Left
ventricle
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The exact cause of congenital heart
disease isn’t often not clear. Most heart
problems in children are present from
birth due to an anomaly in the way the
heart forms during the very early stages
of pregnancy.
The reasons for this may be due to a
number of factors, such as genetics,
environmental factors or infection.
Some medications taken during
pregnancy (such as epilepsy drugs) or
conditions such as diabetes have been
© GOSH NHS Foundation Trust October 2013
shown to cause a small increase in the risk
of having a baby with a cardiac problem.
Babies or children with a syndrome or
proven chromosomal problem (such as
Down Syndrome) often have a higher
risk of having a coexisting heart problem.
In Down Syndrome (Trisomy 21), for
example, up to 60 per cent of children
will also have some form of heart disease.
A smaller group of child heart problems
are due to underlying muscle problems
with the heart muscle itself. These
may be due to an infection acquired in
childhood or an electrical irregularity in
the way the heart contracts as it pumps
blood around the body.
It’s natural to feel guilty if your child is
unwell. But the likelihood that a heart
problem will have been caused directly
by anything you have done during
pregnancy or early life is very rare.
How is congenital
heart disease diagnosed?
Is congenital heart disease
always awful news?
Hearing that your child has a heart problem
is upsetting. However, it is important to
remember that there is huge variation in
how severe the problem may be and the
impact it may have on your child’s health.
For example, a hole in the heart may be
so tiny that, although it produces an extra
heart sound (or murmur), it has no impact
on your child’s day-to-day or long-term
health. If the hole is larger, your child may
need to be monitored via regular clinic
appointments or, if they are struggling
with feeds, we will look at whether they
require surgery.
How is congenital
heart disease treated?
Treatment depends on the type and
severity of the condition, and an important
aspect of our work is individualising the
care we give to each child.
Congenital heart disease can be
diagnosed before birth during your
routine ultrasound examination between
Weeks 18 and 20 of pregnancy.
Some children will not require any
treatment, while others may need
medicines or interventional procedures
involving cardiac catheterisation or child
heart surgery.
However, some cases will not be picked up
until after birth. Signs that your child may
have a heart problem include cyanosis
(blueness), breathlessness or poor weight
gain in the first few months.
If an operation is necessary, we will time
the procedure to minimise the associated
surgical risks. Sometimes waiting a few
months for a child to grow and gain a little
weight gain will make operating easier.
Doctors may also ask to carry out
diagnostic tests (such as an ECG or a
chest X-ray) if they have detected a heart
murmur or you have a family history of
heart problems.
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© GOSH NHS Foundation Trust October 2013
What happens next?
All children with congenital heart disease
(even when corrected) will need regular
check-ups, usually continuing into
adulthood.
These will usually involve repeat Echo
and ECG scans and sometimes cardiac
magnetic resonance imaging (MRI) scans.
The aim of these check-ups is to monitor
your child’s heart function so that any
future heart problems are diagnosed and
treated quickly.
Further information
and support
Contact one of the support organisations
below:
British Heart Foundation
Tel (Heart Help Line): 0300 330 3311 (calls
charged at local rate)
Website: www.bhf.org.uk
Heartline
Tel: 03300 224 466 (local rate number)
Website: www.heartline.org.uk
Notes
Compiled by the Web team in collaboration with the Child and Family Information Group
Great Ormond Street Hospital for Children NHS Foundation Trust
Great Ormond Street
London WC1N 3JH
www.gosh.nhs.uk
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© GOSH NHS Foundation Trust October 2013