Mary and her husband felt it was time they started a family. Only one thing made them hesitate — Mary s epilepsy. The drug she had to take to control her generalized seizures was sodium valproate and she knew there was a chance that this might damage her baby.
So before trying to get pregnamt, they came to see me. ‘I’ve thought about it very carefully, and I’d like to come off drugs altogether while I’m pregnant,’ Mary told me firmly. ‘I know I’m risking having seizures, but I’m not worried about that. I think it’s more important not to risk damaging my baby. And I know perfectly well that there’s no drug you can give me which is guaranteed to be safe during pregnancy.’
I knew very well how Mary felt. But I had to tell her that it wasn’t quite as simple as that. If Mary did have her usual generalized seizure, this too would put her baby at risk, because during the seizure the baby might be deprived of oxygen. So I suggested a third option, which was to change Mary’s anticonvulsant drug from sodium valproate to Tegretol, a drug which was safer for pregnant women to take. However, this change would mean postponing the pregnancy for another few months, to make sure that the new drug suited Mary and controlled her seizures.
Three months later, her seizures well controlled with Tegretol, Mary became pregnant. And nine months after that, their baby was born — an eight and a half pound, perfectly healthy, baby boy.
If you have epilepsy and want to become pregnant, you need to think ahead, and discuss your plans with your doctor well in advance. Anticonvulsant drugs can sometimes damage the developing foetus, and your doctor will want to make sure that you are taking the safest possible drug before you try to conceive. If he or she feels it is appropriate, they may suggest that you change to another anticonvulsant. Unfortunately no anti-epileptic drug is entirely safe in pregnancy, but carbamazepine (Tegretol) is thought to be the least harmful. The risk is higher if you are taking more than one antiepileptic drug.
The risk of having a baby with a birth defect may also be higher if there is a history of birth defects in the family of either parent. Genetic counselling before you embark on the pregnancy will help you assess what the risk is in your particular case.
No one specific abnormality is associated with antiepileptic drugs, but the commonest problems are:
Cleft lip and/or palate and congenital heart defects (associated with phenytoin);
Spina bifida, malformation of the penis, ‘webbed’ fingers or toes (sodium valproate);
Possibly reduced birth weight and slow development (carbamazepine);
Malformations of the face, for example eyes which are set too wide apart (commonly phenytoin).
So, if no anticonvulsant is entirely safe, you may well feel like asking your doctor if you can discontinue your drugs entirely during your pregnancy. There are two arguments against this course of action. The first thing to realize is that although there is a risk in taking anticonvulsants, it is still only a very small one. In the population as a whole, two or three babies in every hundred are born with some birth defect. Amongst babies born to women with epilepsy who are taking anticonvulsants the rate of birth defects is four to six in every hundred babies. The risk is increased, but it is still not a large risk.
Second, until very recently it was generally accepted that, when a woman had seizures during pregnancy, her baby was at risk because it might be deprived of oxygen during a seizure, particularly if she went into status epilepticus. More recent evidence suggests that this may not be so, though doctores are not yet certain. What is certain, however, is that the woman herself runs a risk if she stops taking anticonvulsants.
So the chances are that your doctor will probably advise you to carry on taking medication. In the end, though, you are the one who has to balance the risks and make the decision. If you do continue taking your drugs, try not to worry. Remember that, despite taking anticonvulsants, nearly all women with epilepsy have normal pregnancies and healthy babies.
All women are advised now to take folic acid for a month before they start trying to become pregnant, and to continue to take it for the first three months of pregnancy. Folic acid supplements have been found to reduce the risk of spina bifida and other nervous-system defects. It is especially important for women with epilepsy to take folic acid supplements, as some anticonvulsant drugs can reduce the levels of folic acid. Folic acid tablets can be bought over the counter without a prescription, and you should take one 0.4 mg tablet a day. Some doctors recommend that women who are taking carbamazepine or sodium valproate should take a higher dose of 4-5 mg daily. This same higher dose is also given to women who have previously given birth to a child with spina bifida.
You will probably also be asked to take vitamin K tablets for the last two weeks of pregnancy as some antiepileptic drugs cause vitamin K deficiency, which can produce a rare blood disorder.
In addition, your baby will be given a dose of vitamin K soon after birth, to protect against this disorder.
If you did not plan to become pregnant but find that you are, without having had a chance to discuss changing your medication with your doctor, what should you do? Do not stop taking your drugs (this may lead to more seizures, which could also damage the baby) but see your doctor as soon as you can. He or she will be able to tell you how great a risk there is of you having a baby with some abnormality (the risks for most drugs are known). Clonazepam is one of the anticonvulsants with the highest risk of foetal abnormality, so if you are taking this drug, it is especially important to see your doctor straight away. Start taking folic acid tablets immediately and make sure you have appropriate screening tests for abnormalities of the baby (see below).
Many birth defects can be detected by special screening tests during pregnancy. Most hospitals offer ultrasound scanning around 18 weeks and give a blood screening test around the 16th week of pregnancy to assess the risks of congenital disorder in the baby. Higher than normal levels of one chemical, AFP (Alpha Fetoprotein) can indicate a neural tube defect such as spina bifida.
The results of the test will be reported as ‘screen positive’ or ‘screen negative’. But if you are told your test is positive, it does not necessarily mean that your baby has any abnormality. Screening tests can only assess risks. They are not diagnostic; they cannot confirm that a baby does or does not have spina bifida, only that there is a higher than average risk that it may. There are other reasons for a raised level of AFP; — it may simply be that your pregnancy is more advanced than was thought, for example. Most women who test screen positive go on to have perfectly healthy babies. However, a screen positive result does indicate that there is a need for further tests such as an ultrasound scan and possibly an amniocentesis, which can confirm whether or not there is any abnormality.
If it is found that your baby does have a serious defect, you can then decide whether to continue with the pregnancy.
Inheriting epilepsy
Inevitably, anyone with epilepsy who is thinking of starting a family is going to worry that their child might develop the condition too. So what is the likelihood that this might happen? The chances that anyone will develop epilepsy during their lifetime are about one in 200. If either you or your partner (but not both) have epilepsy, the chances of your child developing the condition are only about one in 40. If both parents have epilepsy the risk is higher. But even so, it is much more likely that your child will not develop epilepsy than that they will.
Seizures during pregnancy
Women with epilepsy are considered to have high-risk pregnancies, mostly because there is an increased risk of seizures during pregnancy, labour and delivery. About a quarter to a third of women have more seizures than usual during pregnancy, but some women have fewer. Unfortunately there is no way of predicting how any individual woman will react, whether she will have more or fewer seizures during her pregnancy. Neither does the course of one pregnancy make it any easier to predict what will happen in a second.
Doctors also have to take into account the slightly increased risks to the babies of women with epilepsy. Although these risks are small, they do exist. Babies of mothers with epilepsy are more likely to be born prematurely or to be of low birth weight, and rates of stillbirth are also slightly higher for these babies. Because of these risks it is not advisable for you to have a home birth. Your doctor will probably recommend that you have your baby in hospital.

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