What is the problem?
Every year, in the UK, about 2,400 babies will be
born with serious congenital heart disease (CoHD).
For 1/3 babies, with "duct-dependent" CoHD, this
will be life-threatening, in the first few days after birth, as
their hearts change.
In many cases, their heart disease will be unexpected, requiring emergency treatment, causing unnecessary
distress and illness,
putting a baby's health and life in danger and
sometimes ending in tragedy.
Who is at risk?
Every
pregnancy is at risk of congenital heart disease and, on average it
affects 1
baby in every 145 born.
If
you have a family history of
congenital
heart disease, the risk of having a
baby with heart disease is increased to between
3% and 5% (about 1 in 25),
rising to 10% (1 in 10) if more than one relative or parent is
affected.
Age is also a factor, especially for women, as this increases the
risk of abnormal chromosomes (known as aneuploidy).
What can you do?
Women should ensure they have a "5 Transverse View" screening scan at
around 18 to 20 weeks gestation.
See:
a better start - improving detection
of heart
disease in pregnancy
Do you have a family history?
If you or your partner have
congenital heart disease (CoHD), or have relatives with CoHD, or
have had a baby with CoHD, then you have a family history of
congenital heart disease.
Tell any direct relatives about this, especially
if they are planning a pregnancy.
When planning a pregnancy, inform your doctor that
you have a family history of
congenital heart disease, so that you can receive
pre-conception genetic counselling if appropriate and take
appropriate nutrition
(e.g. Folic Acid).
Your baby will have a full screening scan at
around 18 to 20 weeks gestation and there may be an option for an early
"fetal echo" at about 14 weeks.
Screening for heart
disease in pregnancy
What else can you do?
There are now more people
living with congenital heart disease than ever before: over
150,000 adults in the UK alone. Link to our
community pages, which include
information on Grown Up Congenital Heart (GUCH) and
CoHD in the community.
There are advice and support groups across the UK and
around the world. Visit our parents'
support pages.
To find our more about congenital heart disease and
screening, see the next topic, start right.
Spread the Word:
Get involved and help us to spread the word and give every "heart
baby" a better start in life ...
