We exist to improve the lives
of everyone affected by epilepsy

Planning a baby

In this section

Planning a baby
Pre-conception counselling
Folic acid
Epilepsy medicines and birth problems
UK Epilepsy and Pregnancy Register

Planning a baby

Most women with epilepsy have healthy pregnancies and give birth to healthy babies. To have the best chance of a healthy pregnancy, medical professionals advise that you avoid getting pregnant until after you have had pre-conception counselling (see below). This is because there is a small risk that having seizures, or taking epilepsy medicine during pregnancy, may affect your health or that of your baby. With careful planning before you get pregnant, these risks can usually be reduced.

If you are already pregnant, and you have not planned it, do not stop taking your epilepsy medicine. If you stopped taking them now, it may not make any difference to your baby’s health. But, it could cause you to have more frequent, or severe, seizures. This could be dangerous for you and your baby. Speak to your family doctor as soon as possible. They will be able to make sure that you get the help and advice you need.

The important thing to remember is that the vast majority of women with epilepsy will have a normal pregnancy and delivery. Most women will not experience a change in their seizure pattern.

Pre-conception counselling

Pre-conception counselling happens before you get pregnant. It is an appointment with a doctor or nurse who knows about pregnancy and epilepsy. The aim is to make your future pregnancies as healthy as possible. It is also a chance to talk about any risks that your epilepsy or epilepsy medicine may pose to your baby. Some epilepsy medicines, taken at low doses, carry very little extra risk. Other epilepsy medicines carry a higher risk.

During the appointment, the doctor or nurse will review your epilepsy and epilepsy medicine. They might suggest making changes to your epilepsy medicine before you try to get pregnant. This might be to change your medicine to one that is more suitable for pregnancy. Or, it might be to try and get better control of your seizures.

The advice you are given will depend very much on your individual circumstances.

You can ask your family doctor to arrange pre-conception counselling for you at any age. You can even ask before you have started a sexual relationship. It is especially important to have pre-conception counselling if you are thinking about having a baby in the near future. It is also important if there is a chance that you could become pregnant.

Folic acid

Taking folic acid, before and during pregnancy, reduces the risk of a baby having spina bifida. If you take epilepsy medicine, medical professionals advise that you take a five milligrams dose of folic acid. This is instead of the 400 micrograms folic acid that most women are advised to take.

It is advisable to take five milligrams of folic acid all the time that there is any chance that you could become pregnant. It is also advisable to take it during the first three months of pregnancy. You will need to get a prescription for this dose from your family doctor.

Taking folic acid can affect how well the epilepsy medicines phenytoin, phenobarbital or primidone work. This could cause you to have a seizure. So if you take these epilepsy medicines it is advisable to talk to your doctor before you start taking folic acid.

Epilepsy medicines and birth problems

All pregnancies carry a risk that the baby will have a birth problem. If you have epilepsy or take epilepsy medicine, the risk of having a baby with a birth problem is slightly higher than for other women.

Epilepsy Action has more information about the risks of individual epilepsy medicines in pregnancy. You could also contact the UK Epilepsy and Pregnancy Register.

Birth problems that are thought to be caused by the mother taking epilepsy medicine during pregnancy are sometimes called fetal anti-convulsant syndrome. They include minor and major congenital abnormalities and neurodevelopment problems. These problems are explained below.

Minor congenital abnormalities

These are birth defects that don’t necessarily need treatment, and might not be permanent. Examples include small fingers, small toenails, and facial abnormalities, such as widespread eyes.

If you have epilepsy, or take epilepsy medicine, your baby has a slightly higher risk of having a minor congenital abnormality.

Major congenital abnormalities

These are birth problems that need medical treatment. They include things such as spina-bifida, a hole in the heart, and a cleft palate (where the roof of the mouth is not correctly joined). The risk of epilepsy medicines causing your unborn baby to have a major congenital abnormality is greatest during the first three months of pregnancy.

In women who don’t have epilepsy, around one or two babies in every 100 will have a major congenital abnormality.

In women who have epilepsy, but don’t take epilepsy medicine, around two babies in every 100 born will have a major congenital abnormality.

In women who take epilepsy medicine, around four babies in every 100 will have a major congenital abnormality. The risks vary greatly, depending on the type, dose and number of medicines you take.

The epilepsy medicine sodium valproate, taken on its own or with another epilepsy medicine, seems to carry a higher risk than other epilepsy medicines. The higher the dose, the higher the risks.

Because the risks vary so greatly, it is very important that you are given individual advice about your pregnancy.

Neurodevelopment problems

Neurodevelopment describes the development of a range of skills such as language and communication, and behaviour. For example, your child might have a poor memory and poor language and social skills. There is a higher risk of your child having a neurodevelopment problem if you take sodium valproate during pregnancy. The higher the dose, the higher the risks.

Neurodevelopment problems become more obvious over time. So, you may not be aware that your child has neurodevelopment problems until they are a few years old. If you took any epilepsy medicine during pregnancy and you are worried about your child’s development, you could ask your doctor to refer them to a clinical geneticist.

Epilepsy Action has more information about neurodevelopment problems.

UK Epilepsy and Pregnancy Register

The UK Epilepsy and Pregnancy register was established in 1996 for pregnant women in the UK. The aim of the register is to find out which type of epilepsy treatment women are taking while they are pregnant. It then collects information about the health of their babies after delivery. Women with epilepsy who become pregnant, whether or not they take epilepsy medicine, are eligible to register. This needs to happen early in pregnancy.

You can also contact the UK Epilepsy and Pregnancy Register for advice about epilepsy medicines taken during pregnancy.
Freephone: 0800 389 1248

If you would like to see this information with references, visit the Advice and Information references section of our website. See Epilepsy and having a baby.

Read about the experiences of other families planning their pregnancies

Read the experiences of a family with two children, one who has feotal valproate syndrome 

Pay it forward

This resource is freely available as part of Epilepsy Action’s commitment to improving life for all those affected by epilepsy.

On average it costs £414 to produce an advice and information page – if you have valued using this resource, please text FUTURE to 70500 to donate £3 towards the cost of our future work. Terms and conditions. Thank you

Code: 
B112.03

Epilepsy Action would like to thank Beth Irwin, Epilepsy Nurse/Midwife, Royal Hospitals, Belfast, UK, for reviewing this information.

Beth Irwin has no conflict of interest to declare.

This information has been produced under the terms of The Information Standard.

  • Updated February 2013
    To be reviewed February 2015

Comments: read the 2 comments or add yours

Comments

I am a mother of two girls with sodium valporate syndrome. I did all thse things people mention - pre-conceptual planning, high dose folic acid - but there was no perfect pill to control my epilepsy all involved side effects and little real data on pregnancies in women on newer drugs so on sodium valporate I stayed. Major disaibilites which might occur were highlighted such as spina bifida but other learning difficulties affecting cognitive ability and delays to speech and language were underplayed. Pregnancy and indeed contraception is indeed a truly difficult area for women; we are faced with a "hobsons choice" of pills to take and of course as a "hidden" disability not enough money or resources are directed to epilepsy.

Submitted by Claire Mitchell on

I had a baby in 1972 she was a slow feeder but is okay (touch wood )
The best thing I have done in my in my life was to have my daughter.
I have had the epilepsy since puberty way way back.
Keep smiling and chin up All who have epilepsy. Hard going but we can
make it xx

Submitted by WB143 on

Contact Author

CAPTCHA
This question is for testing whether you are a human visitor and to prevent automated spam submissions.
By submitting this form, you accept the Mollom privacy policy.