Congenital Heart Disease in the Community
In the UK, over 150,000 adults now live
with Congenital Heart Disease (CoHD) and every year another
5,000 babies are born with CoHD, and about half will have
serious CoHD.
Often CoHD is not
picked up before birth or just after delivery and may not be
recognised in childhood and adult life, so it is important to recognise the signs
of heart disease before, during and after pregnancy and in day-to-day life.
It is also important to consider
exercise, nutrition and proper healthcare throughout life and avoid
health problems associated with heart disease.
Organisations like the BHF and CHF can help - see our
links page for their details.
Before, during and after pregnancy
Before Pregnancy: useful checks
Ask your doctor or GP for advice
if you are thinking of becoming pregnant or have just become
pregnant. They can advise you of any risks (such as any inherited, age or drug-related
risks) and advise you on health matters, such as exercise, diet,
the importance of Folic
Acid,
smoking and alcohol.
Care of mothers who have heart disease
Women who were born with congenital heart disease who become pregnant
need to take extra care of themselves, as pregnancy adds an
extra strain on the heart.
In 2004, BBC Radio4 Woman's Hour:
Cardiac babies reported that about 10,000 women in the UK
were living with congenital heart disease (7.6.'04); in
2005, Woman's Hour ran a further item: "Congenital
Heart Mothers" in the "It's my story" series.
(24.2.'05)
For more information, refer to the BBC
website and
GUCH charity
(Adult or "Grown Up" Congenital Heart)
During pregnancy: looking after mum
Parenting
If your baby has a suspected heart problem or has been diagnosed
with a heart problem, you may feel that the future is uncertain.
However, you should not ignore the normal things that you
need to do for you and your baby.
For example, you should consider parent-craft classes
so that you are confident that you can look after your baby
and this also gives you a chance to meet and talk to other
parents.
If you find any of this difficult
to face, talk to your GP or midwife and a support
organisation (see the
family support).
Stress:
Anxious pregnancies produce stressed children
Screening: It is important to have a
routine ultrasound scan to screen for heart
disease (link to our Screening page)
After pregnancy & birth: undiagnosed
heart disease
Recognising the signs of heart problems:
Most babies with heart problems are not diagnosed
before birth, so it is important to recognise the signs
of a baby with heart problems.
 This is especially important in the first days or first
weeks after birth, when certain undetected heart conditions
(called "duct-dependent") can be fatal.
If a baby is not feeding well and does not seem to have
an infection or any other common cause, you should check
for any heart problems, especially if there are other reasons
to suspect a heart condition (such as breathlessness,
or "blueness", or if the hospital reported a
"murmur").
An echocardiogram will help to detect problems but specialist
surgery may be urgently required. If you are concerned, speak to your GP.
Postnatal surgery:
Link: "My
baby needed heart surgery" (on BabyWorld)
Looking after mothers at home:
A post-natal checkup to look after
a mum's own health is important.
This can sometimes be ignored at difficult times.
Care at home:
Your GP is an important link
between home, your local hospital and specialist
hospitals and other doctors.
GPs also provide continuity of care throughout pregnancy
and afterwards, for the times when you and your children
need specialist help - perhaps from more than one specialist
- and when you return home to the care of local health services.
Nutrition &
Health
Consult your GP before
changing your diet or exercise patterns,
especially if you are pregnant,
have a medical condition or are on medication.
the right balance
There are many factors that can aid a healthy
lifestyle.
Food:
many sources suggest that a well-balanced diet includes fish,
lean meats, fresh fruit and vegetables; at the same time, eating
less processed foods, fats and sugars / carbohydrates.
Eating habits are also important: freshly
prepared, well-balanced meals, instead of snacks & fast foods
Water:
drinking more fresh, pure water & less caffeine & sugary
drinks
Exercise:
regular, moderate exercise is great for the body and also helps
to reduce stress;
taking exercise with friends is a great way to find support (link:
healthy hearts campaign)
Managing
Stress:
recognising excess stress & finding ways to manage it;
finding "time for me" and getting support from friends and
professionals
Support:
having supportive friends & family seems to be very important to our health
and helps to
reduce stress
Folic Acid: especially before
pregnancy
This B vitamin, found in many fruits and vegetables, has been
found to lower the risk of neural tube defects, NTDs (e.g. spina
bifida) in developing babies, as well as have beneficial effects on
adult hearts.
The daily recommendation for women
is 400 micrograms (or 0.4 milligrams) and you should take it before
you get pregnant as NTDs can occur in the first month following
conception.
Spread the word:
A survey in London showed that
rates of neural tube defects are not declining,
and mothers are still unaware of the need to take folic acid before
pregnancy. You can help to spread the word about folic acid
and help to reduce NTDs. (Source: NW Thames CMR, 2005)
Folic acid can be obtained from a good, varied diet, or from a folic
acid supplement.
Some natural sources of Folic acid:
Fruits - Banana, Grapefruit, Orange, Strawberry,
Leafy vegetables - Asparagus, Beans, Broccoli, Brussels sprouts,
Cabbage, Peas, Spinach,
Grains - Whole grain breads, Fortified cereals
Food preparation: Ideally food should be fresh; vegetables should not be
overcooked & steaming, using a microwave or even quick
stir-frying may help to preserve folic acid.
Folic acid may have further benefits: We are starting to learn that
Folic acid may help the body in many ways - for example, helping the body
to break down carbohydrates into simple
sugars to be used for energy.
Selected Links
Truth About Food
(BBC series), Tips:
Healthy |
Sexy |
Slim |
Kids |
Young & Beautiful
Southampton Women's Survey:
largest study of women's health and
lifestyle ever carried out in the UK
New
"Food Pyramid": The US Dept. of Agriculture's
new food pyramid
A small selection of UK/London
websites:
BBC.co.uk: the BBC have a comprehensive website
covering health,
nutrition
and
fitness without adverts
BBC.co.uk/dna/actionnetwork: the BBC's Action Network,
covers a wide range of issues, including
smoking,
alcohol, lifestyle etc.
BeyondChocolate.co.uk:
a healthy relationship with food
FreshFromYourGarden.co.uk: growing vegetables in your own
garden or outdoor space
iVillage.co.uk: articles on
health,
women's health &
"super foods"
with adverts
Complementary and alternative therapies:
Bandolier, an independent
journal about evidence-based healthcare
Links
For more links visit our
Links page
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