In this section
- Planning a baby
- Pre-conception counselling
- Folic acid
- Epilepsy medicines and birth problems
- UK Epilepsy and Pregnancy Register
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 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.
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.
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.
Information about sodium valproate
The Medicines and Healthcare Products Regulation Agency (MHRA) have published some more detailed information about sodium valproate. If you are taking sodium valproate, or your doctor is considering prescribing sodium valproate for you the MHRA advise you to read this booklet along with the patient information leaflet. This is because they are advising that, if you are a woman capable of becoming pregnant your doctor should only prescribe sodium valproate if nothing else works for you.
Because the risks vary so greatly, it is very important that you are given individual advice about your pregnancy.
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.
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.
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 September 2014To be reviewed September 2017