Planning a baby

In this section

Planning a baby

• Pre-conception counselling
• Pregnancy and anti-epileptic drugs
• Folic acid
• UK Epilepsy and Pregnancy Register
• Risks of anti-epileptic drugs during pregnancy
• Why it’s important to take your anti-epileptic drugs as prescribed

Our thanks

Epilepsy Action would like to thank Beth Irwin, Epilepsy Nurse/Midwife, Royal Hospitals, Belfast, for her contribution. Beth Irwin has declared no conflict of interest.

Planning a baby

Most women with epilepsy have healthy pregnancies and give birth to healthy babies. However, there is a small risk that having seizures or taking anti-epileptic drugs may affect the health of you and your unborn baby. This is why you are advised to plan your pregnancies, where possible.

Pre-conception counselling

Pre-conception counselling happens at an appointment with a doctor or nurse who knows about pregnancy and epilepsy. The aim of pre-conception counselling is to plan to make your future pregnancy as safe as possible. To do this, your doctor or nurse may suggest making changes to your anti-epileptic drugs (AEDs) before you get pregnant. This might help you to have fewer seizures or lower the risks of your AEDs affecting an unborn child.

The advice you are given will depend on your own situation. But you may be advised to take fewer AEDs, a lower dose of your AED or a different AED. In some cases, your doctor may help you to gradually stop taking your AEDs altogether, before you become pregnant. This would usually be if you have not had any seizures during the last two years and you are at a low risk of having further seizures.

When you are pregnant, it is important that you don’t make any changes to your AEDs without following advice from your doctor. If you stop taking your AEDs it could cause you to have more seizures. This could put your health and your baby’s health at risk. You can find more information about this below.

You can ask your doctor to refer you for pre-conception counselling at any time. For example you might want it before or when you start a sexual relationship, just in case you become pregnant unexpectedly. Ideally, all women with epilepsy should have pre-conception counselling before every pregnancy

Pregnancy and anti-epileptic drugs

Most women with epilepsy can become pregnant and have healthy pregnancies. However, some women taking anti-epileptic drugs(AEDs) have a slightly higher risk of having a baby with a birth malformation than women who don’t take AEDs.

During pregnancy your AEDs need to be closely monitored by your epilepsy specialist. Make a note of any changes to your seizure pattern. If it changes at any time, ask your ask your GP(family doctor) to refer you to your epilepsy specialist for a review of your AEDs.

• More information on anti-epileptic drugs

Folic acid

During pre-conception counselling, you might be advised to take five milligrams of folic acid all the time, just in case you get pregnant. This is to help reduce the risk of your baby having a malformation such as spina bifida. As it is a much higher dose than for women not taking AEDs, you will need to get a prescription for this dosage from your GP.

Folic acid can affect how well the AEDs phenytoin, phenobarbital or primidone work. Your doctor will be able to advise you about this.

UK Epilepsy and Pregnancy Register

The UK Epilepsy and Pregnancy Register was set up to find out more about having epilepsy and taking anti-epileptic drugs (AEDs) during pregnancy. Some women on the register were taking AEDs, and some were not. The information that follows is taken from the register’s 2011 findings. (The UK Epilepsy and Pregnancy Register: www.epilepsyandpregnancy.co.uk; tel. 0800 389 1248.)

Risks of anti-epileptic drugs during pregnancy

Major congenital malformations

Some of the problems that may affect babies born to mothers with epilepsy are classed as major congenital malformations. Major congenital malformations are birth defects that need medical treatment. Major congenital malformations range from a damaged spine or a hole in the heart to a cleft palate (where the roof of the mouth is not correctly joined).

The risks of having a baby with a major congenital malformation may be related to epilepsy itself as well as to any anti-epileptic drugs (AEDs) taken during pregnancy.

The risk of AEDs causing your unborn baby to have a major congenital malformation seems to be greatest during the first three months of pregnancy.

Risks of having a baby with a major congenital malformation related to epilepsy

If you have epilepsy and don’t take AEDs the risk is around two in a hundred. One or two babies in every hundred born to women without epilepsy who don’t take AEDs have a major congenital malformation.

There are some AEDs not listed here. This is because there is not enough information about whether there are any risks to the baby if they are taken during pregnancy. 

Neurodevelopment problems

Some women who have taken the AED sodium valproate have had babies who went on to have neurodevelopment problems. Neurodevelopment is a term used to describe the development of a range of skills. Examples include language and communication skills and behaviour.

Recent information suggests that there is a higher risk of your baby having a neurodevelopment problem if you take sodium valproate at any time in pregnancy.

Minor congenital abnormalities

Babies born to women with epilepsy have a slightly higher risk of having a minor congenital abnormality than women who don’t have epilepsy. A minor congenital abnormality is a birth defect that doesn’t necessarily need treatment and might not be permanent. Examples of minor congenital malformations include small fingers, small toenails, and facial abnormalities such as wide spread eyes. Minor congenital abnormalities are not linked to any particular AED.

The risk of AEDs causing your unborn baby to have a minor congenital malformation seems to be greatest during the first three months of pregnancy.

Why it’s important to take your anti-epileptic drugs as prescribed

If you suddenly reduce or stop taking your AEDs, without medical advice, you could have seizures. This could put your health and the health of your baby at risk. It could also put you at higher risk of sudden unexpected death in epilepsy.

• More information on epilepsy and having a baby