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.

Congenital Heart Disease is a fact of life and it is increasingly important to recognise the signs before, during and after pregnancy and in day-to-day life.  It is also important to consider nutrition and health throughout life.

Before, during and after pregnancy

Before Pregnancy

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 diet, Folic Acid, smoking and alcohol.  Links:  What is heart disease?  |  Who is at risk?  |  What is screening?

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

Managing Stress:  recognising excess stress & finding ways to manage it;  finding "time for me"

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 recent 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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