What happens if I have epilepsy and become pregnant?
In perspective, about one woman in 200 has epilepsy. Given that a little less than half of those women are of child-bearing age, in a city of a million people we can expect there to be more than 1,000 women with epilepsy who at some point might plan to get pregnant.
What are the risks to the mother?
Generally speaking the frequency and severity of seizures does not change very much during pregnancy.
What is the risk to the baby?
Firstly, the developing baby is at some risk from direct trauma to the mother's abdomen sustained during a major seizure. There is also risk of temporary lack of oxygen to the fetus brought on by a major maternal seizure. A minor seizure, without falling or any type of convulsive element, is very unlikely to cause harm to the developing baby.
Another area of concern is that anti-epileptic drugs (AEDs) can cause birth defects ranging from mild (e.g., harelip, slight shortening of the fingers) to severe (e.g., major heart defects, neural tube defects such as spina bifida). Those abnormalities, as well as others, occur in about 2% of babies born to healthy, medication-free non-epileptic women. This risk increases to about 4% for epileptic women not taking medications to the region of 5 or 6% in epileptic women on AEDs. Thus the risk is small but tangible.
Is it wise to stop medication to prevent fetal malformations?
Gradual stopping of medication under medical supervision certainly can be considered if the epilepsy is very mild (e.g., seizure-free for two years). If medication is withdrawn it should be done before becoming pregnant because the major organs are already forming in the growing embryo within weeks of conception, even before knowing that one is pregnant. See your doctor before making any plans!
Is there anything else I can do to prevent fetal malformation from medication?
Daily folic acid supplements can reduce the risk of neural tube defect. Folic acid is now recommended to all women throughout their childbearing years, whether or not they are pregnant or plan to get pregnant.
Do some AEDs harm the baby less or more than others?
There are differences but the differences are not very great. Whether any of the newer, recently released AEDs are any safer, is not yet known. The preference is to take an AED that best suits your type of epilepsy.
What tests can I have when pregnant, to know if my baby has been harmed by AEDs?
Maternal blood testing at around 16 weeks can help establish that the developing fetus is healthy and without major defects. This is done by screening mother's blood for three special markers. This test is called "triple marker screening" or TMS for short. The test is not perfect; whereas a negative screen does not guarantee a normal baby, it is correct 99% of the time. A positive screen result for fetal deformity can be followed by amniocentesis (analysis of fluid from the birth sac), and fetal ultrasound examination, for detection of defects.
Can I breastfeed and still be on AEDs?
Contrary to previous beliefs, the answer is now yes. It is now known that only relatively small amounts of the following medications find their way into the breast milk: phenytoin, carbamazepine, and valproic acid, all of which are sanctioned for breastfeeding mothers by the American Academy of Pediatrics.
What is the bottom line?
Except when the epilepsy is very mild, it is better to carry on with AED treatment before and during a planned pregnancy. Whereas the baby can be harmed by medication, this risk has to be set against damage to the developing baby from an uncontrolled seizure or (worse still) a series of seizures not covered by medication. It is really a question of which risk is the smaller one. Continuing with an AED usually wins out.
In conclusion, although there are certain risks to the epileptic mother and her developing baby, those risks are relatively small and are not insurmountable. The fact of the matter is that given good care, a healthy infant is produced in more than 90% of pregnancies occurring in women with epilepsy. The decision whether or not to conceive is clearly a personal one that should be discussed in full with one's partner and personal physician.