Are there risks to my baby?
Most women with epilepsy will have a normal pregnancy and labour and over a 9 in 10 (90%) chance of having a healthy baby. Women with epilepsy have a slightly higher chance of having a baby with a birth defect due to genetic conditions, injury during seizures and anti-epileptic drugs (AEDs). Talk to your neurologist about how you can reduce the risk to your unborn baby.
Minor and major malformations
For any pregnant woman there is a small risk (a ‘background’ risk) that her baby may be born with a birth defect or malformation. Birth defects (sometimes called developmental abnormalities) are physical problems that happen when the development of a baby is affected while it is in the womb. There are different types of birth defects which can affect different organs in the body, and can happen for different reasons. Sometimes birth defects are classed as 'minor' and 'major'.
Minor malformations are those that do not need surgery, for example small fingers and toes, and eyes set wide apart.
Major malformations are those that need surgery to correct them. These include a hole in the heart, problems with the kidneys or genitals, cleft lip and cleft palate (where the roof of the mouth is not correctly joined). They also include problems with the development of the spine and nervous system (neural tube defects), such as spina bifida (where part of the spinal cord is exposed). Sometimes the child’s arms, legs, or the way their face looks, may also be affected.
If you are pregnant, avoiding the following will all help reduce the risk of birth defects: alcohol, smoking, unprescribed medication and illegal drugs. This is because all these substances can be passed through your bloodstream to your baby and so may affect the baby's development. Women with epilepsy have a slightly higher chance of having a baby with a birth defect than women who don't have epilepsy. This may be due to an underlying genetic condition which also caused the epilepsy. Or risks can be due to injury to your unborn baby if you have seizures during pregnancy.
AEDs and birth defects
Women with epilepsy who take anti-epileptic drugs (AEDs) during pregnancy also have a slightly higher risk than women with epilepsy who don't take AEDs. Different AEDs vary in the risk they pose, and the risk of birth defects rises with higher doses of the drug, and if you already have a child with a birth defect. Taking more than one AED increases the risks, especially if this includes sodium valproate.
- 2 – 3 women in every 100 (2 – 3%) in the general population will have a baby with a major malformation (the 'background risk').
- 3 women in every 100 (3%) who have epilepsy and don’t take AEDs will have a baby with a major malformation.
- 4 – 10 women in every 100 (4 – 10%) who have epilepsy and do take an AED will have a baby with a major malformation.
Taking more than one AED increases the risks, especially if this includes sodium valproate (see below).
Recent studies show that lamotrigine (Lamictal), Carbamazepine (Tegretol) and levetiracetam (Keppra) have low rates of birth defects, in line with, or only sightly higher than the background risk (2 - 5%). Again, for each drug the risks increase with higher doses.
Sodium valproate – an important case
Sodium valproate (brand names include Epilim, Episenta and Epival) has greater risks in pregnancy than other AEDs, with 7 women in 100 (7%) having a baby with a major malformation, rising to 1 in 10 women (10%) if they take more than 1000mg (1g) per day.
Also, up to 4 children in 10 (up to 40%) whose mothers took sodium valproate have problems with development and learning.
The Medicines and Healthcare Products Regulatory Agency (MHRA) states that sodium valproate should not be prescribed to girls or women who are pregnant, or who may become pregnant in future, unless it is the only effective drug for them and they are on a pregnancy prevention programme.
They also recommend that treatment with sodium valproate should only be started by a doctor experienced in managing epilepsy.
If you are taking sodium valproate, do not suddenly stop taking it, but talk to your doctor as soon as possible about the best treatment options for you. Sodium valproate is an effective drug for epilepsy and for some women, it is the best or only drug that controls their seizures.
Fetal anti-convulsant syndrome
Some AEDs are thought to affect a child’s development after they are born. This is called fetal anti-convulsant syndrome (FACS). The risk of this happening appears to be higher with sodium valproate than with other AEDs.
Problems with the child's development and learning can include: delayed walking and talking, poor speech and language, and problems with memory, attention, lower intelligence and behaviour. Often these effects are not seen until the child starts to get older, for example when they start nursery or school.
Children exposed to sodium valproate in the womb may also be more likely to have an autism spectrum disorder.
The Organisation for anti-convulsant syndromes (OACS) and FACS Association both provide information and support to families affected by the syndrome.
Are you receiving the right information?
Our sodium valproate survey showed us that almost 70% of the women surveyed haven't received new safety warnings about the dangers of taking it during pregnancy. Read the sodium valproate guidelines
What do these risks mean for me?
Most women with epilepsy have over a 90% chance of having a healthy baby. Any individual risks for you will depend on many factors including your type of epilepsy, the AEDs and dose you take, and any other medical conditions you may have.
If you stop taking your AEDs, your seizures may increase, or become more severe. Seizures may cause more harm for you and your baby than any risks associated with the AEDs themselves. You and your specialist can discuss any specific risks, and the best options, for you specifically.
Why is taking folic acid recommended?
Folic acid (vitamin B9) helps a developing baby’s spine to form and reduces the risk of neural tube defects, such as spina bifida. The Department of Health recommends that all women planning to have a baby take 0.4 ug (400 micrograms) folic acid daily, and throughout the first 12 weeks of pregnancy.
Women with epilepsy are strongly recommended to take a higher dose of folic acid (5mg) daily, as soon as they start trying for a baby and for at least the first 16 weeks of their pregnancy, or for the whole pregnancy if their doctor feels this is appropriate. This strength of folic acid is only available on prescription but will be free of charge.
Talk to someone
It is essential to talk to your neurologist about planning your epilepsy treatment for your pregnancy and when your baby arrives. It is best to do this before you become pregnant. You may have questions about the type of medication you take, the dose, how being pregnant could affect your seizures and how seizures could affect your unborn baby.
Taken from our Pregnancy and parenting leaflet. Order this leaflet from our online shop as part of our 'first five free' offer, or download the pdf using the link below.