This leaflet answers common questions about pregnancy for women with epilepsy. If you would like further information, or have any worries, please do not hesitate to ask your nurse or doctor.

In all cases, a doctor will explain your care and any risks or complications to you and answer any questions you may have. It may also be useful for your partner and family to read.  

If you have any questions, please speak to your midwife or doctor.  

Epilepsy and pregnancy

 

About 1% of the total UK population has epilepsy, and the condition affects some 2,500 pregnant women every year. A great majority of these women will have a normal pregnancy with no change to their seizure pattern. Possible symptoms of epilepsy include uncontrollable jerking and shaking, called a seizure or fit, losing awareness and staring blankly into space, becoming stiff, and even collapsing.

More than 90% of women with epilepsy give birth to a healthy baby. However, it is important to plan your pregnancy and birth with your consultant as there is a small risk that your condition may affect your health and your unborn baby.

If you find out that you are pregnant, please book to see your GP or obstetrician for advice as soon as possible. Do not stop taking your anti-epileptic medication. Your medication will help prevent frequent seizures during pregnancy, which can be harmful for you and your baby.

What should you do if you are planning a pregnancy?

Pre-pregnancy counselling

Pre-pregnancy counselling with your GP or neurologist is a great opportunity to plan your pregnancy in advance as safely as possible.

Taking anti-epileptic drugs

If you are taking anti-epileptic drugs, you should continue to use contraception and take your usual medication until you have seen your GP or neurologist. A specialist review is recommended before you try to get pregnant to ensure that you are on the lowest, safest dose of medication to optimise your seizure control. Please note that changing medication or its dose may affect your ability to drive.

It’s currently advised that women taking sodium valproate (Epilim) who are planning a pregnancy should discuss changing to a different anti-epileptic drug with their doctor.

Folic acid

If you are planning for a baby and have epilepsy, it is advised to start taking 5mg of folic acid daily three months before you start trying and until week 13 of your pregnancy.

Epilepsy medication can increase the risk of your baby being born with spina bifida. Folic acid reduces this risk and could reduce the risk of your baby having heart and limb defects.

A 5mg higher dose is higher than the usual recommended 400mcg and will need to be prescribed by your doctor.

What does having epilepsy mean for me if I am pregnant?

Most types of epilepsy will not harm you or your baby. Most women with well-controlled epilepsy will remain seizure-free in pregnancy. However, some women may have more seizures when they are pregnant. Lack of sleep, hunger, and dehydration can also trigger more seizures.

Excessive vomiting, also known as hyperemesis, is more common in the first four months of pregnancy. If you vomit soon after taking your medication, this can reduce its effectiveness and this can lead to more seizures. If this happens to you, speak to your doctor or midwife as soon as possible.

A rare, but serious, complication of poorly controlled epilepsy is sudden unexplained death with epilepsy (SUDEP) which is more likely to occur in pregnant women.

What does having epilepsy mean for my baby?

With any pregnancy, there is a small chance that your baby may not develop normally in the womb. Some types of anti-epileptic medication can affect the baby’s development, especially in the first 12 weeks when the baby’s organs are developing. A small proportion of babies may be born with physical defects such as cleft palate, a hole in the heart, or spina bifida.

Around 1-2% of all babies are born with a birth defect, which increases to 3% in women with epilepsy who are taking anti-epileptic medications. However, around 4-9% of babies born to women with epilepsy who are not taking medication have birth defects.

Taking lamotrigine (Lamictal) and Carbemazepine (Tegretol) whilst pregnant have the lowest risk of babies being born with defects, and sodium valporate (Epilim) has the highest risk.

However, the overall risks to your unborn baby are higher if you have a seizure and injure yourself by not taking your medication.

Will my baby get epilepsy too?

It is unlikely. If one parent has epilepsy, a baby has a 4% chance of developing the condition. If both parents have epilepsy, the baby has a 15% chance of developing it.

Your antenatal care

It’s important to book your antenatal care with a hospital as soon as you find out that you are pregnant. Your midwife will refer you to see an obstetrician who specialises in maternal medicine early on.

The maternal medicine team have an antenatal clinic caring for women with epilepsy which is run jointly with a neurologist and specialist maternal medicine midwife. You can self-refer to the maternal medicine team.

At your first visit to see the maternal medicine team, they will talk to you about: 

  • Ways to reduce the risk of seizures and address potential seizure triggers, such as taking your medication and getting enough rest and sleep 
  • Taking 5mg folic acid 
  • Your general health and your epilepsy history
  • Any allergies you have
  • Medication
  • The UK epilepsy and pregnancy register.

The UK epilepsy and pregnancy register is a nationwide project to collect information about the anti-epileptic medication that women take in pregnancy and the health benefits for their babies. This helps doctors to give the best advice to women with epilepsy who are contemplating pregnancy. You may have more antenatal clinic appointments than other pregnant women. 

You will be offered routine ultrasound scans to check that your baby is developing. Your baby’s growth may be checked more regularly via scans if you are taking certain medications.  

If you are taking two types of anti-epileptic medications, you will be offered a specialist scan of your baby’s heart. 

Where should I have my baby?

It will be recommended that you give birth in our consultant-led unit in the hospital with a special care baby unit alongside, so that you and your baby can receive extra care if required.

How will I have my baby?

You will be able to discuss your birth plan with your midwife and obstetrician. Most women with epilepsy can have a vaginal birth.

It is important that you bring your anti-epileptic medication with you to the hospital and that you take it when you are in labour at the times you normally would.

The risk of having a seizure during labour is very small, at 1-2%. Remember to bring your medication into hospital with you and continue to take it as normal. Tiredness, pain, hunger, stress, and dehydration can all increase the risk so your team will try to make sure that you have as must rest as possible.

For pain relief, you can try gas and air (Entonox) or a TENS machine or have an epidural. Pethidine cannot be used as it can trigger seizures.

 

What happens after my baby is born?

Your baby will normally stay with you unless they need extra care. 

You will be able to breastfeed your baby. Breastfeeding is best for your baby and is considered safe. Epilepsy medication can pass into breastmilk, but the amount is usually so small that it is not harmful.  

Tiredness, stress, and anxiety can all increase seizure risk, so it is really important that you remember to take your medication regularly. This can be more difficult when you are caring for a newborn. It may help to set a timer on your phone, set calendar reminders, or try using an app to help you.  

You can get pregnant again very soon after giving birth and breastfeeding is not a reliable form of birth control. It is especially important to try to avoid unplanned pregnancy if you have epilepsy. It is a good idea to plan contraception before you give birth. Your team may be able to arrange this for you before you leave hospital. Please speak to your midwife about this.

Safety at home

The day after you return home after having your baby, you will be visited by the community midwife. Your epilepsy nurse and community midwife will talk with you about keeping your baby safe in case you have a seizure. This includes:

  • Getting as much rest and support at home as possible
  • Nursing your baby on the floor 
  • Bathing your baby on the floor via a sponge bath 
  • Laying your baby down on a safe surface if you have a warning aura. 

Key points to remember

  1. Ideally, before you start trying to get pregnant, talk with your GP or epilepsy doctor to make sure you are on the safest medication to control your seizures and for your growing baby’s wellbeing
  2. Speak with your GP or specialist hospital doctor as soon as possible after you find out that you are having a baby and we can give you the help you need for a safe pregnancy, delivery and a healthy baby
  3. Do not stop taking your anti-epileptic medication because it is helping to prevent seizures that could harm you and your baby
  4. Remember you and your baby are more at risk of harm if you stop taking your medication, have a seizure and hurt yourself
  5. Most women with well controlled epilepsy will not have seizures just because they are having a baby, but some will – help look after yourself and your baby by trying to get enough sleep, eat healthy foods and drink enough water during your pregnancy and when you are caring for your baby at home.