I wanted to learn everything I could about pregnancy and epilepsy. Pregnancy and fertility in women with epilepsy was often on my mind after being diagnosed with epilepsy at eighteen. I wondered if birth control would affect my medication. It concerned me that my medication would affect birth control. I wondered what would happen if I got pregnant before I was ready. There was a worry that my baby would have epilepsy. I had a fear that my baby would have birth defects. I wanted to know what I could do to prepare for having a baby 15 years before it actually happened. Not everyone is a planner or a worrier like that. But it is important to plan. And it’s important to know the risks and benefits of your choices. I wrote this blog to help others like me find a good starting point for information about pregnancy and epilepsy.
Here are five things to know about pregnancy and epilepsy that will help in preparing for the next step of planning pregnancy as a person with epilepsy.
1. Women with epilepsy can have children – but plan ahead
Prepare by learning everything about your health and medications. Get doctors on board with the plan so they know you’re trying to get pregnant. Gather questions and have a conversation with a neurologist or epileptologist and don’t hold back. If there are questions about what to ask, then do some research online or reach out to a local epilepsy agency like Epilepsy Durham Region. It’s a good idea to think about these complex issues prior to getting pregnant.
A mother needs to make sure her health is in check before she starts trying for a baby. If she is having seizures daily, now is not the best time to start a family. It is important to get her health under control first. Of course, everyone involved wants to ensure that the baby is healthy and so the mother should also be in good general health. It’s important to maintain a balanced diet and nutrition. Getting exercise and the appropriate amount of sleep will keep the mother physically fit and it may help her manage stress too (bonus!).
Review medications and vitamins or supplements with the doctors.
Discuss the dosage and quantity of medications used to control seizures. In addition to anti-seizure medication, it is important to take vitamins with a folic acid supplement prior to and throughout pregnancy, to reduce the risk of certain kinds of birth defects (Harden, 2009). Since many of these problems occur very early in pregnancy (sometimes before you recognize you are pregnant) it is wise to start the supplement before becoming pregnant (Harden, 2009). It’s an option to ask your physician for a referral to a genetics specialist who can help assess the risks to the baby from epilepsy, seizure medication, and other inherited traits that may be present.
2. Anti-Seizure Medication – Weigh the Pros and Cons
There can be risks to the baby and mother from having uncontrolled seizures. Seizures can result in falls, or cause oxygen deficiency for the baby and can increase the risk of miscarriage or stillbirths (Chillemi & Vazquez, 2009). Therefore, it’s important to make sure the woman is on the right medication that is suitable for her during pregnancy. Some Anti-Seizure Medication (ASM) may affect the child, and there is some chance of birth defects (Harden, 2009). Multiple seizure drugs at higher doses are statistically related to an increased risk for some types of birth defects.
Most women with epilepsy should continue taking anti-seizure medication, and whenever possible, take a single anticonvulsant at the lowest dose that provides seizure control. Staying on medications poses less risk to their own health and the health of their babies than discontinuing medication and the subsequent risk of having uncontrolled seizures (Harden, 2009).
It is very important to discuss with the doctors (neurologist, epileptologist, OB/GYN) and consider the pros and cons before making any changes or stopping any medication. Cover any potential problems now to make reasonable decisions about this important life event. If you are going to change medications, always do this in close care of a doctor as there could be a danger to the woman and the developing baby if there are uncontrolled seizures during pregnancy.
Remember that your chances of a normal, healthy child are excellent – greater than 90% (Crawford, 1997).
3. Managing Mothers’ health during pregnancy
If it was common to only see your neurologist or epileptologist every 1-year, then the epilepsy care will change slightly during pregnancy. “In addition to your regular OB appointments, your epilepsy specialist will see you at least once during each trimester of your pregnancy. You may also need to have bloodwork done monthly to monitor levels of your anti-seizure medications, as these can fluctuate throughout pregnancy.” (Harden, 2009).
Maternal mental health month is May, and it’s important to know that women with epilepsy are at a higher risk of experiencing anxiety and depression before, during, and after pregnancy compared to women without epilepsy (Bjørk et. al., 2015). Continue to monitor for any mental health issues and talk to a doctor about it often if there are any concerns.
The frequency of your seizures can change during pregnancy.
Here are some ideas from The Epilepsy Foundation on how you can decrease your risk of seizures while pregnant:
- Taking your medication as prescribed is the most important factor in reducing the chances of having a seizure.
- Medicine levels may be changing. You will need blood tests of your seizure medicine done more frequently.
- If medicine doses increased during pregnancy, they may rise too high after delivery. Make sure you know the symptoms of high drug levels and what to do if you don’t feel well.
- Keep regular appointments with your epilepsy team.
- Try to sleep when the baby sleeps, although this can be difficult if you have other small children. When you first bring the baby home, ask family and friends to help so you can get enough rest.
- Use babysitters, even if you’re home. Have someone take care of the baby to give you time to rest or get other things done.
4. Breastfeeding your child – benefits outweigh the potential risks
Some new moms with epilepsy worry that they will be unable to breastfeed due to their medications. However, since the baby has been exposed to these same drugs throughout the duration of the pregnancy, it should be safe to breastfeed without having to worry (Meador et al, 2014). Most women who take anti-seizure medications can breastfeed. In fact, the benefits of breastfeeding often outweigh the limited risks associated with medication exposure through breast milk (Veiby et. al., 2015).
Many doctors recommend taking anti-seizure medications after feeding the baby to minimize the amount of medication that passes through the breastmilk (Veiby et. al., 2015). Talk to the doctors about whether specific medications are safe for breastfeeding.
Breastfeeding is good for babies and good for the mother, but it may create more demands on the mother with epilepsy, especially at night with the loss of sleep.
Here are some tips to help with night feeding:
- Whenever possible, encourage your spouse or partner to do the night feedings so you can get uninterrupted sleep.
- If you breastfeed, try pumping breastmilk into bottles so your spouse can use these at night. Or try supplementing breastfeeding with formula.
- Keep the baby’s crib next to your bed at night and feed him or her in bed with you. Whenever you are feeding your child, sit or lie down. This is a perfect time to put your feet up and relax.
- If you’re bringing your baby into bed with you, always check out the “Safe Sleep Seven Guidelines” to make sure you’re bedsharing safely.
5. Bringing home baby – keeping baby safe
Parents with epilepsy (this applies to women and men) need to take extra caution when caring for children. That means making care decisions like not bathing your child alone, changing your baby’s diaper on the floor instead of a raised surface, and using a stroller with automatic wheel locks.
Here are some tips from The Epilepsy Foundation considering the precautions to take as a caregiver with epilepsy when caring for a baby:
- When bathing a baby alone, it is preferable to wash the baby on a mat in the crib, with a bowl of water outside the crib. If you are alone, do not put the child in an adult or baby bath.
- A well-padded easy chair is a safe, comfortable place to breast- or bottle-feed a baby. If you’re in a rocking chair, pad the arms with towels and use extra pillows to cushion the child. The mother can also lie on her side to feed the baby.
- Ensure there is a portable crib or playpen on each level of the home.
- Safely lock away medications, out of a young child’s reach. When the child can understand, explain why you take the medication and tell him/her about any seizure you may have. Children can learn to help you and help care for younger siblings during a seizure.
- Secure an outside play area with a sturdy fence and a locked gate. If taking a young child for a walk in a stroller, attach a safety harness to the child. Discreetly affix a tag or sticker on the stroller with the baby’s name and the name of a relative or emergency caregiver to contact in the event of a seizure. If taking a toddler for a walk without a stroller, continue to use a wrist harness until the child is old enough to fully understand that she or he must stay close to you if you have a seizure.
Any woman who is pregnant and taking AEDs is strongly encouraged to enroll in the North American Antiepileptic Drug (AED) Pregnancy Registry. This is a research project that is collecting data to help determine the effects of AEDs used during pregnancy. Women who enroll will be asked to provide information about the health of themselves and their baby in three short phone interviews. You can enroll by calling 1-888-233-2334. To learn more, go to www.aedpregnancyregistry.org
– Written by Marla Turner
Bjørk, M.H., et. al. (2015). Depression and anxiety in women with epilepsy during pregnancy and after delivery: a prospective population-based cohort study on frequency, risk factors, medication, and prognosis. Epilepsia. 2015 Jan;56(1):28-39.
Chillemi, S., Vazquez, B. (2009). Epilepsy and Pregnancy: What Every Woman with Epilepsy Should Know.
Crawford P., (1997) Epilepsy and pregnancy: good management reduces the risks. Prof Care Mother Child. 7(1):17-8.
Harden, C., et. al., (2009). “Management issues for women with epilepsy—Focus on pregnancy (an evidence-based review): Teratogenesis and perinatal outcomes.” American Association of Neurology
Meador et. al., (2013). “Fetal Antiepileptic Drug Exposure and Cognitive Outcomes at Age 6 years (NEAD study): A Prospective Observational Study.”
Veiby G, Bjørk M, Engelsen BA, Gilhus NE. (2015). Epilepsy and recommendations for breastfeeding. Seizure. 2015 May; 28:57-65.