Epilepsy and Pregnancy

Thinking about starting a family?

In the UK, 2500 people with epilepsy have a baby every year. The vast majority have a safe pregnancy and deliver a healthy baby. However for some with epilepsy there are more issues to consider and seeing a doctor or nurse with an interest in medical conditions in pregnancy can be very helpful.

Your GP can refer you to the Pre-conception clinic at West Middlesex University Hospital or at Chelsea and Westminster Hospital. At this appointment, the doctor will discuss the important information about preparing for pregnancy, being pregnant and looking after your baby afterwards [summarised below]. This will usually involve talking about your epilepsy and its treatment in some detail, and checking the rest of your medical and family history.

Before pregnancy

Ideally, all pregnancies are planned and you should make sure you are “fit for pregnancy”; this link gives you some helpful information, Planning for Pregnancy | Tommy's (tommys.org) . You should use reliable contraception if you do not want to be pregnant, or are preparing for pregnancy but not yet ready. Some forms of contraception are affected by anti-epilepsy medication, so it is important that you discuss this with your family planning team. More information about contraception and access to appointments is available through the Family Planning Association, Contraception - Sexwise  and Sexual Health London www.shl.uk/clinics.

There are some things you should do before you stop using contraception. This includes making sure your general health is as good as possible:

  • If you smoke or use recreational drugs, you should try to stop.
  • Your bodyweight should be as close to normal as possible.
  • You should check if you have had 2 Rubella [German measles] vaccinations (called MMR), and if not, have them at least 1 month before you get pregnant.
  • Ensure your sexual health and (if you are 25years or older) cervical smears are up-to-date.
  • If you have any other health problems apart from epilepsy you should talk to your GP to get advice as to how these conditions may be affected by pregnancy.

All people who are planning a baby should start taking Folic acid (vitamin B9), ideally for 3 months beforehand. If you are taking medication for your epilepsy you should take a higher dose than usual, which is only available on prescription from your doctor, folic acid 5mg once a day. This is to reduce the chance of the baby having a problem such as cleft lip, structural heart defect or neural tube defect such as spina bifida [a condition where the baby’s spine does not form properly] or anencephaly [where the skull and brain of the baby is not formed properly].

Is my medication safe to take in pregnancy; will it harm my baby?

It is very important for your baby that you are as well as possible before and during pregnancy. Most people need to take their medication to stay well; you should never stop it without careful planning and discussion with your epilepsy team. You should aim to conceive when you are on the lowest dose of the smallest number of medications that work to properly control your fits. You should discuss this, so that you can work out the best choices for you and your baby.

In any pregnancy, there is a background risk of 1 - 2% (1 - 2 out of 100 pregnancies) of a structural problem in the baby. Some of these are structural problems that can be easily treated e.g.: extra finger or webbed toes'. Some are classed as “major‟ malformations such as cleft palate, or heart problems such as a “hole in the heart”. Some can be seen on an ultrasound scan undertaken at about 20 weeks, but not all.

Some people with epilepsy appear to have an increased risk of having a baby with a structural malformation. This risk depends in part on how many different medications you need to control your epilepsy, which medicines you use, and what dose of medication you are taking. Between 4 - 9% i.e. 4 to 9 out of 100 women taking medication for their epilepsy have a baby with a malformation. This risk is much higher with sodium valproate, (Epilim®, Depakote®) (30- 40%), and women taking it should use reliable contraception(see link at end for more information). This is why discussing your plans regarding pregnancy before you conceive is so  important, as changes to your medicines may be possible, and you will be able to make choices that suit you.

Could I come off my medications?

Some people who have been fit free for a number of years may wish to consider reducing and then stopping their medication, if their fits don’t return. This should only be considered before pregnancy whilst you are using reliable contraception, and with direct supervision of your neurology team. It is not likely to be possible to come off your medication if the electrical pattern in your brain [EEG] or head scan show a high ongoing likelihood of epilepsy, or if your doctor thinks that the original reason for your fits is still present. You may not be able to drive whilst you are making these changes.

Will my baby have epilepsy?

For any baby the risk of developing epilepsy by the age of 20 is 1 in 100. Depending on the reason for mum or dad having epilepsy this may be increased to 2 - 5 out of 100, so 95 out of 100 babies will not develop epilepsy.

Will becoming pregnant increase my fits?

This depends on a number of things. Most people don’t get an increase in their fits, as long as they keep taking the correct medication at the right dose – for some medicines, such as Lamotrigine [Lamictal®], the dose may need to be increased in pregnancy. Some women find that nausea and vomiting in the first months of pregnancy make it hard to take their tablets regularly. There are some safe anti-sickness tablets that should be used to prevent this from becoming a problem. Other women find pregnancy stressful or don’t sleep so well, and this can trigger fits. But many people find that they feel very well and happy in pregnancy, that they are even more motivated than usual to take their tablets properly, and that they can adjust their lifestyle to accommodate the tiredness if it develops.

What happens if I have a fit in pregnancy?

If you do have a fit in pregnancy, this can be very worrying for you, but in most cases your baby will be fine. Tonic-clonic fits have the most potential to harm the baby, particularly if you injure yourself or it lasts a long time. With any fit, you should contact the maternity unit, as the team may want to review you and the baby, check the level of medication in your blood and maybe increase your medication so it doesn’t happen again.

If you drive, you will need to inform the DVLA if you have a fit in pregnancy.

Having fits can also be dangerous for you, so it is important that you adopt simple safety measures like leaving the bathroom door unlocked, showering instead of bathing whenever possible, avoiding triggers such as stress, tiredness, alcohol, wearing a bracelet or necklace indicating your medication [such as Medialert] or updating the ICE (in case of emergency) medical app on your phone.  We will provide a safety information sheet.

I am pregnant already...

When you find out you are pregnant continue taking the same medication; if you haven’t been taking Folic acid, start 5mg once daily as soon as possible.

Contact your GP as soon as possible, and arrange a referral to the Maternity unit – or go online and do a self-referral [www.chelwest.nhs.uk].

During pregnancy, you will be seen at the Obstetric Medicine Clinic, where you, your pregnancy and your epilepsy can all be cared for.

Giving birth

Your doctor or midwife will discuss a personalised care plan with you during pregnancy so you have a better idea of what might happen in labour. On average, 1 to 2 out of 100 women with epilepsy have a fit in labour, so we advise you to deliver in hospital [rather than at home]. To minimise the chance of having a fit in labour, it is very important that you do not forget to take any of your normal medication. Women may be sick in labour, so instead of taking them by mouth we often give them into your vein. We also encourage you to have good pain relief, so that you do not become too stressed or exhausted.

Looking after your baby

People with epilepsy have the same joys and stresses as all new parents! There are a few pointers to keep yourself and your baby safe, in case you have a fit. This includes changing the baby on the floor, bathing the baby with someone around and not locking the bathroom door when you are in the shower. You should try not to get too tired, so do accept offers of help from friends or family. Generally, breastfeeding is encouraged and can be a good way of slowly reducing the exposure of the baby to your medication.

If you have any more questions, please ask at the epilepsy clinic, your GP, or asked to be referred to the Pre-conception Clinic in the Maternity Unit.

Further information and references

Contributors
Liz Alden