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It is essential that you seek expert advice from a doctor or epilepsy nurse specialist when you are considering starting a family.

Doctors are continuing to learn more about the best ways to treat epilepsy during pregnancy. By enrolling with the UK Epilepsy and Pregnancy Register if you are pregnant and have epilepsy, you will help to give doctors a clearer picture of which medicines are safest for babies' health.

Most pregnant women with epilepsy have a normal pregnancy and childbirth.

The frequency of fits (seizures) may increase in pregnancy in some women with epilepsy. For women with epilepsy, the risk of complications during pregnancy and labour is slightly higher than for women without epilepsy. The small increase in risk is due to:

  • The small risk of harm coming to a baby if you have a serious seizure whilst pregnant.
  • The possible small risk of harm to an unborn baby from some anti-epilepsy medicines (discussed further below).

Note: the risk of complications to your unborn baby from you having a seizure is greater than the risk from taking your epilepsy medication.

If you take anti-epilepsy medicines when you are pregnant, you have a very small increased risk of having a baby with a birth defect. However, this may depend on exactly which medicine you take.

The most recent studies suggest that taking one of the following anti-epilepsy medicines whilst pregnant was not associated with an increased risk of having a baby with a major birth defect.

However, the research notes that there is less evidence around about these medicines, as many are newer treatments and they haven't been around such a long time. The same studies show that the following anti-epilepsy medicines are associated with a small increased risk of having a baby with a birth defect:

These medicines are linked with a small increased risk of having a baby with a neural tube defect (such as spina bifida), facial defects such as cleft lip and/or palate, congenital heart defects, arm or leg abnormalities, and a defect of the penis, known as hypospadias.

Fetal anticonvulsant syndrome
Babies whose mothers took sodium valproate for epilepsy during pregnancy may have one or more abnormal features. Some abnormal features may also be seen in babies of mothers who took carbamazepine for epilepsy during pregnancy. Associated features may include abnormalities of the forehead, eyebrows, nose, ears, mouth, fingers, feet and nails. However, the features are often very mild and may also occur in babies whose mothers did not take any medicines for epilepsy during pregnancy.

Editor's note

Dr Sarah Jarvis, 1st April 2019

Sodium valproate and pregnancy

Sodium valproate medicine is linked to a higher risk than some other epilepsy tablets of problems for your baby if you get pregnant while you are taking it. The National Insttitute for Health and Care Excellence, NICE, has issued a summary of all the guidance it has issued about this. This included guidance for women who are of childbearing age, women who are planning pregnancy and women who are pregnant. You can find out more in the further reading section at the end of this article. In summary:

  • If you're taking sodium valproate. even if you're not planning to get pregnant, it is very important to have regular epilepsy follow up with a specialist.
  • if you've started your periods but haven't gone through the menopause, it's also very important to use reliable contraception.
  • If you're planning to get pregnant you must always see a specialist before you stop using contraception - please see your GP for an urgent referral.
  • If you become pregnant while taking sodium valproate, you must see your GP urgently.
Dr Sarah Jarvis, 23rd May 2022

New national guidance on epilepsy
NICE has produced new guidance on epilepsy. The guidance includes a section on support and monitoring for women planning pregnancy or who are pregnant. The guidance recommends that if you have epilepsy and are pregnant or planning pregnancy:

  • You should be referred to a specialist epilepsy team who can review your medication options with you.
  • Information about your care during pregnancy should be shared between your GP, epilepsy team and obestetric (pregnancy care) team.
  • You should be advised of the importance of taking your medicines as they are prescribed.
  • Your epilepsy team should explain the risk and benefits of the various medicines available to you before you start trying to get pregnant.
  • You may need more frequent monitoring during pregnancy if you:
    • Are under 16.
    • Have had a seizure within the previous 12 months.
    • Have bilateral tonic-clonic seizures.
    • Have a learning disability.
    • Are at risk of sudden unexplained death in epilepsy (SUDEP).
  • Your team may recommend doing blood tests to monitor the levels of your antiseizure medication. They should discuss the results of these tests with you to help you and your team make decisions about your dosage.
  • If your dose of medication is changed during pregnancy, you should be given a plan on returning to your pre-pregnancy doses, starting shortly after you have your baby.
  • Your team should follow national guidance on the safest medications to take (discussed in this leaflet).

Before becoming pregnant, it is best to seek advice from your doctor or epilepsy nurse. You should be seen by an epilepsy expert to discuss in detail your treatment during your pregnancy. The potential risks and benefits of adjusting your treatment, if necessary, can be discussed. If your pregnancy is planned carefully then any risk of complications may be minimised.

Most of the advice is the same as for any other woman who is planning a pregnancy. However, other specific things that may be discussed include:

  • In some cases it may be wise to change to a different medication which is less likely to cause harm to a developing baby (depending on the medication you are already taking). NB: This is particularly necessary if you are taking sodium valproate.
  • It may be an option to stop or reduce the dose of your treatment before you become pregnant if your seizures have been well controlled. However, deciding to come off anti-epilepsy medication can be a difficult decision. Factors such as the type of epilepsy that you have can be important. For example, if you have the type of epilepsy that causes severe tonic-clonic seizures, there is a risk that you could have a severe seizure when you are pregnant if you stop your medication.
  • Advice to take folic acid at a strength of 5 mg a day. This should ideally be taken before you become pregnant and be continued until you are 12 weeks pregnant. Although folic acid is recommended for all women who are pregnant, the dose for women taking anti-epilepsy medicines is higher than usual. Taking folic acid has been shown to reduce the risk of having a baby born with a spinal cord problem such as spina bifida.
  • Advice to notify your pregnancy to the UK Epilepsy and Pregnancy Register. This is to allow information to be gathered to improve the future management of pregnant women with epilepsy.

Breast-feeding for most women taking anti-epilepsy medicines is generally safe. Your doctor, midwife or health visitor can advise you in more detail.

In general, the probability is low that a child born to a parent with epilepsy will also have epilepsy. However, it can partly depend on your family history, as some types of epilepsy run in families.

Therefore, genetic counselling may be an option to consider if you have, or your partner has, epilepsy and also a family history of epilepsy.

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Further reading and references