Pregnancy and parenting
A guide to starting a family
Each year in the UK around 2,500 women with epilepsy have a baby. Most of these women will have a normal pregnancy and delivery, an unchanged seizure frequency and over 90% chance of having a healthy baby.
If you have epilepsy it doesn’t necessarily mean that starting a family will be any more difficult for you than for anyone else. However, it may mean that you have a few more things to consider before, during and after your pregnancy.
I have epilepsy - can I have children?
Many people with epilepsy have children and a normal family life. Having epilepsy doesn’t usually make it harder for a woman to get pregnant. However, anxieties around having epilepsy, taking medication and the possibility of seizures can all affect how you may feel about trying to start a family.
Certain anti-epileptic drugs (AEDs) may reduce the production of sperm for some men, which could lower a man's fertility.
Some women with epilepsy have irregular periods or a condition called Polycystic Ovary Syndrome (PCOS). PCOS is more common in women who put on weight, and some AEDs have weight gain as a possible side effect.
Reduced sperm production and PCOS are treatable but they can make becoming pregnant more difficult.
Although you may be concerned that AEDs might affect your chances of becoming pregnant, it is important never to stop taking AEDs suddenly and without the medical guidance of your neurologist or GP.
Some people with epilepsy have a low sex drive. Some men say they struggle to get an erection. Low sex drive and problems with arousal can happen for a number of different reasons including anxiety, depression, or the side effects of some anti-epileptic drugs (AEDs).
Both these problems can be more common for people that have complex focal seizures in the temporal lobe, as this area is related to sex drive. These problems can then make it difficult for a woman to become pregnant. If you are concerned about your sex drive or sexual response you can ask your doctor for advice.
Can my child inherit epilepsy?
This may depend partly on whether your epilepsy has a genetic cause. Another genetic factor is your 'seizure threshold'.
Seizure thresholds
A seizure threshold is your brain’s natural resistance to seizures. This threshold is part of everyone’s genetic make up (how we inherit our characteristics) and is passed from parent to child. As we all have a seizure threshold, any of us can have a seizure under certain circumstances.
The likelihood of your child developing epilepsy depends on the seizure threshold of both you and your partner. If a child inherits a low seizure threshold they are more likely to start having seizures, and often without an obvious reason. But if they inherit a high seizure threshold then seizures are less likely to start unless an outside factor happens, for example a severe head injury.
Epilepsy is sometimes a symptom of an inherited medical condition, passed from parent to child. This is rare, but such conditions includ neurofibromatosis and tuberous sclerosis.
Preconception counselling
If you are thinking of starting a family 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. Because women with epilepsy have a slightly higher risk of complications than women who don't have epilepsy, forward planning can help keep these risks to a minimum.
Because of the possible effects of AEDs on an unborn baby, having your AEDs reviewed before you get pregnant can help you and your neurologist to make sure that you are taking the most appropriate AED and at the most suitable dose during your pregnancy.
If you have seizures you are likely to be advised to keep taking your AEDs throughout your pregnancy. Your doctor may suggest adjusting your AEDs so you take the lowest possible dose that will still control your seizures. However, some AEDs are used up more quickly in the body during pregnancy, and so the dose may need to be increased during your pregnancy to keep your seizures under control. Your doctor might suggest a change to the type of AEDs that you take, as some AEDs can be more risky to unborn babies than others.
Some women prefer not to take AEDs during their pregnancy and may want to discuss this option with their neurologist. If you have seizures during pregnancy there is a risk of injury to yourself and your baby. This risk could be higher (depending on the type and frequency of seizures you have) than the risk of the AEDs affecting your baby.
If you have been seizure-free for two or three years, your doctor might suggest slowly stopping your AEDs before you try for a baby. However, if your AEDs are stopped there is a risk that your seizures could start again.
Having seizures again could affect your home or work life, and if you are currently driving and have a seizure you will need to stop driving until you are seizure-free for one year.
Making decisions about your medication is not always easy and preconception counselling can give you the chance to ask any specific questions or talk about any concerns you may have.
What if I'm already pregnant?
If you become pregnant without having the chance to have some preconception counselling, it is recommended that you keep taking your AEDs as normal and start taking folic acid supplements. Taking folic acid during the early stages of pregnancy may help to reduce the risk of your baby developing conditions such as spina bifida. It is also recommended that you make an appointment to see your neurologist as soon as possible.
Could pregnancy affect my epilepsy?
Most women with epilepsy do not have any change in their seizure frequency during pregnancy. However you might find that your seizures are better controlled during pregnancy, or that you have more seizures than is usual for you. This could be because of the common side effects of pregnancy such as tiredness, or the effects of morning sickness on your AEDs.
If you are having more seizures while pregnant than you normally do, you can talk to your neurologist about how to manage the situation safely for you and your baby.
Could pregnancy affect my AEDs?
During pregnancy your body may use up more of your AEDs than usual. This means the amount of AEDs you normally take may not be enough to stop your seizures from happening. This is especially true for the AEDs Lamictal (lamotrigine) and Keppra (levetiracetam).
Although routine monitoring of AED levels in pregnancy is not generally necessary, your neurologist might ask you to have blood tests to make sure that the amount of AEDs you take is at the right level for you and your baby throughout your pregnancy, especially if your seizures increase or are likely to increase. Testing the levels of the AED in your blood helps your neurologist decide if the dose needs to be changed. If your dose needs to be changed, it will usually be slowly reduced back to its original level after you give birth. However if the higher dose has led to better seizure control after birth, and there is no evidence that this increased dose is causing you problems, then you and your neurologist may decide to leave your AEDs at this new dose.
Can morning sickness affect my AEDs?
Despite the name, morning sickness can happen at any time of the day and affects some women during their first 12 weeks of pregnancy, although it can last longer. If you’re sick after taking your AEDs, the medication may not have a chance to work properly. Changing the time of day you take your AEDs, for example taking them when you’ve stopped feeling sick, may be helpful. However, it is important (as far as possible) to keep the length of time between doses the same. Your doctor should be able to advise you on how best to manage your AEDs.
Can seizures affect an unborn baby?
There is no evidence that the seizure activity in simple focal, complex focal, absence or myoclonic seizures are harmful to an unborn baby. However if you injure yourself during any type of seizure, this could carry a risk to your baby. Tonic clonic (convulsive) seizures, could potentially cause miscarriage or serious harm to you and your baby.
To reduce any risks to you and your baby, the aim is for you to be as seizure-free as possible during your pregnancy. Taking your AEDs as prescribed or talking to your GP, midwife or specialist about any seizures that you have can be helpful.
Can AEDs affect an unborn baby?
If the baby’s father has epilepsy and takes AEDs, these will not affect the baby’s development, because the baby will not come into contact with his AEDs.
For a woman with epilepsy who takes AEDs during her pregnancy, her baby will be exposed to the AEDs in the womb. Although while she is pregnant a mother’s bloodstream is kept separate from her unborn baby’s, some substances can pass from her blood into her baby’s blood via the placenta. These substances include nutrients, oxygen, alcohol and medication, including AEDs. Some AEDs can affect how the baby grows and develops in the womb, particularly so in the first 12 weeks of pregnancy when the baby’s main organs and skeleton are developing.
Birth defects
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 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, 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); for example 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 minimise the risk of birth defects: alcohol, smoking, unprescribed medication and illegal drugs. This is because all these substances can be passed to the baby through your bloodstream and so may affect the baby's development.
AEDs and birth defects
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 genetic causes or possible injury as a result of having seizures.
Women with epilepsy who take AEDs during pregnancy also have a slightly higher risk than women with epilepsy who don't take AEDs. How much the risk increases depends on which AEDs are taken and at what dose.
- 1 – 2 women in every 100 (1 – 2 %) in the general population will have a baby with a major malformation.
- 3 women in every 100 (3%) who have epilepsy and don’t take AEDs will have a baby with a major malformation.
- 4 – 9 women in every 100 (4 – 9%) who have epilepsy and do take AEDs will have a baby with a major malformation.
Different AEDs vary in the risk they pose; and the risk of birth defects is often greater the higher the dose of the drug, and if you take more than one type of AED.
- Sodium valproate (Epilim) appears to have greater risks than other AEDs, especially when taking more than 1000mg a day.
- Carbamazepine (Tegretol) and lamotrigine (Lamictal) have the lowest recorded risks, though this depends on the dose.
- Taking more than one AED increases the risks, especially if this includes sodium valproate.
Although these statistics are helpful they do not show the chance of these problems happening for you. Your individual risk will depend on many factors including the type of epilepsy you have, the AED and dose you take and any other medical conditions you may have.
If you stop taking your AEDs, it could cause your seizures to increase, or become more severe. This may cause more problems for you and your unborn baby than any risks associated with the drugs themselves.
Most women with epilepsy will have a normal pregnancy and labour, unchanged seizure frequency and over a 90% chance of having a healthy baby.
Foetal anti-convulsant syndrome
Some AEDs are thought to affect a child’s development after they are born - this is called foetal anti-convulsant syndrome (FACS). FACS can affect a child as they grow by causing developmental or learning difficulties, and problems with behaviour. Often these effects are not seen until the child starts to get older, for example when they start nursery or school. The risk of this happening appears to be higher with sodium valproate.
The Organisation for anti-convulsant syndromes (OACS) provides information and support to families affected by the syndrome.
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, for example spina bifida. The Department of Health recommends that all women, regardless of whether they have epilepsy, take 0.4 mg (400 micrograms) folic acid supplements daily before they think about becoming pregnant, until the 12th week of pregnancy.
Women with epilepsy are strongly recommended to take a higher dose of folic acid (5mg) for at least the first 16 weeks 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.
What is pre-natal screening?
Pre-natal screening is the name for a number of different checks that all women have done during their pregnancy, to see how their baby is developing in the womb. These include ultrasound scans which are done at certain intervals throughout pregnancy, commonly at 12 weeks (known as the 'dating scan') and at 18 - 20 weeks (known as the 'anomaly scan').
Women are also offered combined blood tests that measure a number of things including alphafetoprotein (AFP) levels. AFP is a type of protein which is passed from an unborm baby to its mother. The levels of AFP in a mother's blood can indicate the risk of their baby being born with certain health disorders including spina bifida. Screening does not say for certain if a baby will be born with or without any birth defects. It just uses the information collected to determine the risk of a baby being born with birth defects.
The UK and Irish Epilepsy and Pregnancy Register (UKEPR)
If you have epilepsy and are thinking of trying for a baby, or you are already pregnant, you might like to contact The UK Epilepsy Pregnancy Register (UKEPR). The UKEPR is a long-term study looking at the effects of AEDs on unborn babies and the effects of having seizures while pregnant. This study aims to find out which type of AED (if any) women are taking, and to collect information on the health of their babies after delivery.
The study lets you speak to an epilepsy nurse and ask questions about your pregnancy and epilepsy. If you would like to join the UKEPR you will be asked about your epilepsy and any AEDs that you take, and the UKEPR may want to contact you after your baby is born. It is free of charge to be part of the study and over 9000 women have taken part so far. It is hoped that the findings from the study will provide some answers and guidance for other women in the future.
To join the UK register call 0800 389 1248. For the Irish register call 1 800 320 820.
Will having epilepsy affect my labour?
Your doctors may advise you to give birth in hospital. For 2 - 4 women in every 100 who have epilepsy (2 - 4%), the stress of labour may cause them to have a tonic clonic seizure either during labour or during the 24 hours afterwards. This can happen even if you don't normally have tonic clonic seizures. If you have a seizure during labour your baby's oxygen supply may be reduced. Drugs can usually be given to control the seizure.
Most women with epilepsy have normal deliveries and healthy babies. It can be useful for the midwife and medical team who will be at the birth to know about your epilepsy, including what type of seizures you have, which AEDs you take and when you normally take them. Ideally, AEDs are taken as normal during labour.
If you want to have a home birth you will need to carefully consider the possibility of having a seizure during labour, which could lead to complications. If you would like to have a water birth may also need to consider the possible risks if you become confused or lose awareness during your seizures.
Generally, a caesarean section (C-section) is only necessary if it is in the best interests of you and your baby.
What pain relief can I have?
Women with epilepsy can have most types of pain relief during labour. These include:
- an epidural (an anaesthetic into the spine);
- breathing techniques; and
- gas and air (called Entonox).
Another way to relieve pain is by using a TENS (transcutaneous electrical nerve stimulation) machine, which uses electrical impulses to stop pain signals getting to the brain. Although there is no known research showing that TENS machines are not safe for use in epilepsy, many manufacturers still include a warning in their instructions and advise women with epilepsy to speak to their doctor before using a TENS machine.
Pethidine, a strong painkiller, has been thought to trigger seizures in some women and, if possible, should be avoided.
It is helpful to tell the midwife and medical team if your seizures have any particular triggers. For example if pain, tiredness or over-breathing have triggered seizures in the past.
After your baby is born
Why is vitamin K prescribed?
Vitamin K plays an important part in making our blood thicken (clot). A very small number of newborn babies (about 0.01% or 1 in 10,000) are born without enough vitamin K. This can cause nose bleeds, mouth bleeds and in some cases internal bleeding. Some AEDs can reduce a mother's vitamin K levels and this can increase the risk of their baby having low vitamin K levels.
The Department of Health recommends that all newborn babies are given extra vitamin K at birth, or within the first month of being born, usually 1mg given by injection.
Can I breastfeed my baby?
The Department of Health recommends that every woman is encouraged to breastfeed her baby if at all possible. Breastmilk provides all the nutrients a baby needs, for the first six months of their life.
If you take AEDs, your baby will have become used to the drugs while in your womb. If you decide to breastfeed, then a small amount will be passed to your baby in your breastmilk. Breastfeeding can be a useful way of weaning your baby off the medication that they have become used to. Some drugs, for example phenobarbital and primidone can pass more easily into breastmilk and can make a baby sleepy, so it may be a good idea to alternate between formula milk and breastfeeds.
The patient information leaflet that comes with your AEDs often includes information about breastfeeding and that particular drug. If you have any doubts, you can talk to your neurologist, midwife, or health visitor.
The Breastfeeding Network has a helpline run by pharmacists on a voluntary basis. You may have to leave a message but they aim to call people back the same day.
If you’re more likely to have seizures when you are overtired, sharing night time feeds with a partner might help to increase the chance of a good night’s sleep.
Childcare
If your seizures (or your partner’s) are controlled, then your epilepsy may not affect how you look after your child.
However, parents who have seizures may find taking extra safety measures helpful. This depends on the type of seizures and the activity involved.
Keeping you and your baby safe
If your seizures happen suddenly and without warning, the following ideas may be helpful to keep your baby safe. These might not always be necessary, especially if there is someone else around to help you, but they could be helpful if you are with your baby on your own and have a seizure.
• Dressing and changing your baby on the floor means they would only have a short fall if you had a seizure.
• Sponging your baby down on a changing mat on the floor is safer than bathing them in water.
• Carrying your baby in a padded carrycot or sling rather than having them in your arms, will help to protect your baby if you fall.
• Putting a deadlock on your baby’s pram means that the pram will not roll away if you let it go.
• Feeding your baby in a low highchair may be safer as it is less likely to tip over than a higher one.
• Feeding your baby while you sit on the floor, surrounded by cushions and leaning against the wall, may help to keep your baby safer.
Talking to your child about epilepsy
Children can often be taught at a young age what to do if someone has a seizure. Many children learn what to do from watching other people. As their parent, you are the best person to decide when it is the right time to explain your epilepsy and your seizures to your child.
During a seizure your child could learn to:
• stay with you, so they don’t get lost;
• get help from someone else, for example a neighbour or friend; or
• help you themselves, if they know what to do.
Some people wear medical jewellery or carry an ‘I have epilepsy’ ID card saying what to do if they have a seizure. Even if children are too young to manage seizures, they may be able to tell other people that you have a ID card or medical jewellery.
What about immunisation?
The Department of Health recommends that every child is immunised against infectious diseases such as, measles, mumps and rubella (MMR). Current research suggests that there is no connection between the MMR vaccine and epilepsy.
If you are concerned about any vaccination your child may need, you can talk about this with your child’s doctor or paediatrician. It is your choice whether your child is vaccinated, and having more information might help you to decide.
Immunisation Against Infectious Disease 2006 - 'The Green Book'
You can order a copy of our 'Pregnancy and parenting' leaflet from our online shop as part of our 'first five free' offer.
© Epilepsy Society
Information produced in November 2012
