Planning a Baby
There is no reason why most women with epilepsy cannot become pregnant and have a healthy pregnancy. Wherever possible, it is advisable for every pregnancy to be planned, because for women with epilepsy there is a slightly higher risk of complications than in women who don’t have epilepsy. However, with forward planning, these risks may be minimised.
If you decide to have a baby it is a good idea to seek medical advice before you conceive, if possible. This is known as pre-conception counselling and is an opportunity to discuss your epilepsy and your anti-epileptic drugs (AEDs), and the risks they may bring to your pregnancy.
The advice that you are given will depend very much on the type of epilepsy you have. The aim will be to keep you as seizure free as possible, while trying to reduce any risk of damage to the baby from the drugs you are taking.
The risk of AEDs affecting your unborn child is at its greatest during the first three months of pregnancy. This is why it is advisable to have pre-conception counselling and get your medication reviewed before you become pregnant.
If you become pregnant before you have had any pre-conception counselling, it is important to continue taking your AEDs until you have had an opportunity to discuss your drug treatment with your epilepsy specialist or epilepsy specialist nurse. If you were to stop taking your medication, this could cause you to have an increase in seizures, which may cause more problems than the risks associated with the drugs themselves.
It is advisable to make an appointment to see your family doctor, epilepsy specialist or epilepsy specialist nurse as soon as you find out that you are pregnant.
Many doctors suggest that folic acid supplements of 5mg a day should be taken by women with epilepsy who are planning a family. These should start before conception and be continued throughout the first three months of pregnancy.
As unplanned pregnancies are common, some doctors suggest that any woman with epilepsy who could become pregnant should take 5mg of folic acid daily all the time.
There is some evidence, however, that folic acid can interact with phenytoin, primidone and phenobarbital making them less effective. If you are taking either of these drugs, it is important to seek advice from your family doctor, epilepsy specialist or epilepsy specialist nurse before taking folic acid supplements
The following recommendations are based on the NICE guideline - The Epilepsies. The diagnosis and management of the epilepsies in adults and children in primary and secondary care (Oct.04):
- The aim is to be free of seizures during pregnancy, wherever possible
- If you have simple partial, complex partial, absence or myoclonic seizures during pregnancy, there is no evidence these will harm your developing baby, unless you fall and injure yourself
- If you have tonic-clonic seizures during pregnancy there is a slightly higher risk of harm to your developing baby. Even here, the risk remains very low, particularly if your seizures are infrequent
- Although the risk of having seizures during labour is low, the guidelines recommend that all women with epilepsy deliver their babies in hospital
- If you are taking anti-epileptic drugs, it may be appropriate to take 5mg a day of folic acid before you become pregnant. You may wish to discuss this with your doctor. (Note: Folic acid can alter the way that the drugs phenytoin, primidone and phenobarbital work. If you are taking one of these drugs you will need specific advice from your epilepsy specialist before taking folic acid)
- If you are planning to stop your anti-epileptic drug treatment during your pregnancy, your doctor should discuss with you the possible risks to you and/or your developing baby.
Risks During Pregnancy Associated with Epilepsy and Anti-epileptic Drugs
The risk of AEDs affecting your unborn child appears to be greatest during the first three months of pregnancy. This is why it is advisable to speak to your doctor and get your medication reviewed before you become pregnant, if possible.
Major Congenital Malformations
Some of the problems that may occur in babies who are born to mothers with epilepsy are classed as major congenital malformations (MCMs).
Congenital means a condition that is present at birth. MCMs include abnormalities such as malformations of the spinal cord and spine (spina bifida), the heart (such as hole in the heart), the ribs, the bladder, the sexual organs and the fingers and toes (such as unseparated fingers).
The risks of MCMs can be related to having epilepsy itself and to any AEDs that a woman is taking during pregnancy.
- Women in the general population have a one to two per cent chance of having a baby with a MCM (one to two children in every 100 born)
- Women with epilepsy, who do not take AEDs, have a three and a half per cent chance of having a baby with a MCM
- Women who do take AEDs have an average of around a four per cent chance of having a baby with a MCM.
The risk of MCMs also depends on the number of drugs that the woman is taking during pregnancy.
- In women who take only one AED, the average MCM rate is slightly more than three and a half per cent
- In women who take two or more AEDs, the average risk is increased to six per cent.
Risks of major congenital malformations related to specific anti-epileptic drugs.
- Carbamazepine taken as a single drug treatment (known as monotherapy) carries the lowest risk, with 2.2 babies born with MCMs in 100 women taking the drug (2.2 per cent)
- Taking sodium valproate as monotherapy at a daily dosage under 1000mg, carries a risk of 5.1 in 100 (5.1 per cent)
- Taking sodium valproate as monotherapy at daily doses over 1000mg carries a risk of 9.1 in 100 (9.1 per cent)
- Drug combinations that include sodium valproate have a significantly higher risk of MCMs than combinations that do not include this drug
- Taking lamotrigine as monotherapy at daily dosages of 200mg or less carries a risk of 3.2 in 100 (3.2 per cent)
- Taking lamotrigine as monotherapy at a daily dosage above 200mg carries a risk of 5.4 in 100 (5.4 per cent)
- Taking carbamazepine and sodium valproate together carries a risk of 8.8 in 100 (8.8 per cent)
- Taking sodium valproate and lamotrigine together carries a risk of 9.6 in 100 (9.6 per cent)
- The information from the study did not include any specific data on vigabatrin, gabapentin, topiramate, tiagabine, oxcarbazepine, levetiracetam and pregabalin.
Minor Congenital Abnormalities
Women with epilepsy are also at an increased risk of having a baby with less severe problems, which are classed as minor congenital abnormalities. These include small fingers and toes with small nails, clubfoot and facial abnormalities. At the time of writing, there are no percentages for the risks of minor congenital abnormalities available, and more research into this is needed.
There is some evidence to show that having epilepsy slightly reduces a woman’s fertility. However, this effect is usually treatable. Having epilepsy and taking anti-epileptic drugs does not prevent a woman from receiving fertility treatment. A few women may experience a small increase in the number of seizures when taking certain hormone-based fertility drugs.
Once You Are Pregnant
Many women will not experience a change to their seizure frequency during pregnancy. However, some women will have fewer seizures and around a third will have more seizures. It is important that a doctor experienced in treating women with epilepsy carefully monitors anti-epileptic drug (AED) levels during pregnancy because the AED levels may decrease and the dosage may need to be increased. This is to ensure that you are as seizure-free as possible during both pregnancy and labour. It is unlikely that increasing your AEDs in later stages of pregnancy will cause any increased risks for the developing baby.
Current evidence suggests that unborn babies are only very rarely harmed by their mothers' seizures, unless the mother falls and injures the baby. For this reason, it is a good idea to aim to have as few seizures as possible during pregnancy.
Providing you and your baby are well, your epilepsy should not prevent you having a normal labour and delivery. During labour, it is important to take your anti-epileptic drugs at the same time that you usually would. You could ask your midwife or companion to help you to remember them.
Pain Relief During Labour
TENS machines are often used for pain relief during labour. These are perfectly suitable for women with epilepsy.
An anaesthetic which goes in the spine, called an epidural, is another suitable option for pain relief, as long as the anaesthetist is aware that you have epilepsy and knows which anti-epileptic drugs you are taking.
Pethidine is not recommended by some doctors, as it may trigger seizures in some people.
Gas and air is safe, so long as you do not over-breathe when you are using it. Over-breathing can trigger seizures in some people.
In any newborn baby, there is a small risk that severe bleeding may occur during labour or afterwards. If the mother takes enzyme-inducing anti-epileptic drugs, this risk is slightly higher.
You may wish to breast feed your baby, but have concerns about whether the anti-epileptic drugs (AEDs) you are taking will be a problem. The good news is that the amount of AEDs that passes into your breast milk will be less than your baby received while in the womb.
However, as babies do not absorb drugs in the same way as adults, repeated doses of a drug in the breast milk may lead to a build-up in the infant. In some cases, this could cause the baby to become drowsy and have difficulty feeding.
Despite this, as long as the baby is full-term and closely monitored, it is unlikely that breast-feeding will be a problem.
If your baby is born prematurely, some AEDs may accumulate in your baby's body and cause them more problems than in a baby born at full term. Therefore, it is advisable to discuss breast-feeding with your baby's paediatrician.
If you are breast-feeding it is likely that your nights will regularly be broken. Lack of sleep is a common trigger for seizures. If lack of sleep tends to bring on your seizures, you may need to arrange for someone else to give some night feeds by bottle. Another solution would be for a friend or family member to give you a daytime break, so that you can catch up on missed sleep.
When you are feeding your baby yourself, you might find the safest way to do this is while sitting on the floor with your back leaning against the wall. This way your baby is less likely to be at risk of injury, should you have a seizure.