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Planning a baby

Most women with epilepsy have healthy pregnancies and give birth to healthy babies. To have the best chance of having a healthy pregnancy, medical professionals advise you have pre-conception counselling before you become pregnant. This is because your epilepsy and epilepsy medicines can increase your risk of having a baby with a birth problem. The risk varies, depending on which epilepsy medicine you take and at what dose. Getting specialist support at the right time, particularly if you are at risk of an unplanned pregnancy, may reduce these risks.

What are birth problems?

Birth problems are sometimes called birth defects or congenital anomalies. They happen when a baby doesn’t develop properly in the womb. Birth problems can be minor or major. Minor birth problems don’t usually need any treatment. They include minor abnormalities of the fingers, toes or limbs.

Major birth problems usually need treating. They include things like spina bifida, a hole in the heart, or a cleft palate (where the roof of the mouth is not correctly joined).

Any woman can have a baby with minor or major birth problems, but some epilepsy medicines can increase the risk.

Epilepsy Action has more information about epilepsy medicines and their individual levels of risk.

Sodium valproate

Taking sodium valproate (or any other medicine containing valproate) during pregnancy can harm your unborn child. The risk is higher than with other epilepsy medicines. Children whose mothers take sodium valproate during pregnancy are also at risk of development problems, such as difficulties with speech, language and memory. They are also more likely to have autism or an autism spectrum disorder.

The Medicines and Healthcare products Regulatory Agency (MHRA) says doctors must not prescribe sodium valproate for women and girls of child-bearing age, unless they are on a valproate pregnancy prevention programme. This means you must be on highly effective contraception to prevent pregnancy, and see a specialist at least once a year to sign a risk acknowledgment form.

The MHRA says women should not take sodium valproate during pregnancy unless there is no other treatment that works for them. If you take sodium valproate and want to have a baby, speak to your epilepsy specialist for advice about planning your pregnancy. Your specialist may advise you to switch to a different medicine. If so, they should tell you how to do this safely, before you start trying for a baby.

If you are taking sodium valproate and unexpectedly become pregnant, keep taking your medicine and make an urgent appointment to speak to your GP. They will refer you to your specialist for advice.

Epilepsy Action has more information about sodium valproate and risks in pregnancy.

I’m already pregnant, should I stop taking my epilepsy medicine?

If you are already pregnant, don’t stop taking your epilepsy medicine. If you do, it might not make a difference to your baby, but it could cause you to have more seizures. Or your seizures could be more severe. This could be harmful for you and your baby. Instead, speak to your GP as soon as possible, so they can get you the help and advice you need.

What is pre-conception counselling? 

Pre-conception counselling happens before you get pregnant. It’s an appointment with a doctor or nurse who knows about pregnancy and epilepsy. The aim is to review your epilepsy and your epilepsy medicines. Some medicines carry a higher risk of harming your baby if you take them during pregnancy. Other medicines carry a much lower risk, but might not control your seizures as well. The counselling will help you to decide which is the safest epilepsy medicine and dose to prepare for any future pregnancy.

The doctor or nurse might suggest you change your epilepsy medicine to one that carries a lower risk, before you get pregnant. Or they might change it to try to get your seizures under better control. Their advice will depend on your circumstances, and how you feel about making any changes. For some women, a gradual withdrawal of their epilepsy medicine might be considered safe. This would need a risk assessment and very careful planning and support. 

How do I get pre-conception counselling? 

You can ask your GP to arrange pre-conception counselling for you at any age – even before you have started a sexual relationship. It’s especially important if you are thinking of becoming pregnant in the near future, or if there’s any chance that you could get pregnant.

Do I need folic acid? 

All women are recommended to take folic acid before and during pregnancy, to reduce the risk of having a baby with spina bifida. For women without epilepsy, or not taking epilepsy medicines, the usual dose is 400 micrograms. For women taking epilepsy medicines, the dose is 5000 micrograms (5 milligrams). To get a 5 milligrams dose you will need a prescription from your GP.

When should I start taking folic acid? 

If you take epilepsy medicine, it is recommended you take 5 milligrams of folic acid daily if there is a chance you could become pregnant. You will usually need to continue with it for the first 3 months of your pregnancy.

Will folic acid affect my epilepsy medicine? 

If you take phenytoin, phenobarbital or primidone, folic acid could affect how well those medicines work. This could cause you to have a seizure, so speak to your doctor before starting folic acid.

UK Epilepsy and Pregnancy Register

The aim of the register is to find out about women’s experience of taking epilepsy medicines during pregnancy. If you have epilepsy and are pregnant, the register would be delighted to hear from you.
Website: epilepsyandpregnancy.co.uk
Tel: 0800 389 1248.

If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.

Code: 
B112.09

Epilepsy Action would like to thank Epilepsy Specialist Midwife Kim Morley for her contribution to this information.

Kim Morley has no conflict of interest.

This information has been produced under the terms of Epilepsy Action's information quality standards.

  • Updated June 2019
    To be reviewed June 2020

Comments: read the 1 comments or add yours

Comments

Just tell your doctors you will get violent seizures during childhood delivery so they will have doctors standing by. If not, you could die like I almost did. It was a Sunday delivery at 2 AM in the morning. No doctors. Nurses screamed doctors to come in. My doctor came waltzing in at 8AM and I was near death. Today my daughter and I are fine but it was a close call. Again, have doctors with you during the entire delivery. Tell them you will sue them if they come in just at the end for delivery. This gets their attention that you mean business.
God bless.4

Submitted by Susan E. Trickel on

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