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Few moments feel as big as seeing a positive pregnancy test. Joy, nerves, and a mountain of questions often arrive all at once. When you’re an expectant mother with epilepsy, a few more questions join the pile. Will my seizures change? Is my baby safe? How can my partner help?
Epilepsy and pregnancy can feel like a lot to juggle. Here’s the encouraging part. The majority of people with epilepsy have healthy pregnancies and healthy babies, especially when they plan ahead.
As one MyEpilepsyTeam member reported, “I had the blessing of being even healthier when I was pregnant than I regularly am.”
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This article covers the risks to know about, ways to stay safe during pregnancy, and what to expect after your baby arrives. It’s written for expectant mothers and the partners who support them.
Your care team during pregnancy and childbirth will include your neurologist and obstetrician/gynecologist (OB-GYN). Here’s what they’ll be watching for to keep you healthy and safe.
Pregnancy leaves seizure patterns unchanged for most people with epilepsy. Going about nine months without a seizure before pregnancy makes new seizures while you’re carrying your child less likely.
Still, seizures can pick up for some people, most often when sleep is short or doses of anti-seizure medication get skipped. As one MyEpilepsyTeam member shared, “With my pregnancies, I noticed more seizures in the beginning and end of each.”
Seizures matter because they can cause injury and complications for the mother and the baby. Tonic-clonic seizures, which involve the entire body, carry the most risk.
A large U.S. hospital study found that severe complications were over twice as common among people with epilepsy who gave birth. These included early delivery, blood pressure problems linked to pregnancy, and heavy bleeding after birth.
Some research shows that deaths tied to epilepsy, including sudden unexpected death in epilepsy (SUDEP), happen more often around childbirth. That’s a big reason your neurologist and OB-GYN should work together.
The majority of babies born to people with epilepsy are born healthy. Still, there’s a small chance of problems, which can come from seizures, anti-seizure medications, or from both. Some anti-seizure medications can raise the chance of birth defects, slow a baby’s growth, or affect brain development.
In general, any pregnancy carries a 2 percent to 3 percent chance of a major birth defect, such as heart problems or cleft lip. Among those with epilepsy who take medicine, that range is slightly larger, about 4 percent to 10 percent, depending on the medicine and dose.
Here’s the key point. Stopping medicine on your own isn’t the answer. Stopping anti-seizure medications can make seizures more frequent and harm you and your baby.
Good planning
lowers many of the potential risks described above. These steps can help you and your partner stay ahead of them.
The best time to start preparing is before you conceive. Some groups suggest beginning up to a year ahead of trying to conceive. Meeting with your neurologist and OB-GYN allows them to review your treatment ahead of time and make recommendations.
The goal is steady seizure control with the safest medicine plan for you and the baby. Your neurologist and OB-GYN can help you:
It’s also important to take folic acid, a vitamin that lowers the chance of serious brain and spine birth defects. Guidelines suggest a daily dose of 0.4 milligrams or more, starting before pregnancy and lasting through it.
Be sure to tell your doctors about every seizure you have. Even minor symptoms can signal that a bigger seizure is more likely. Working with your healthcare team helps minimize risk.
A MyEpilepsyTeam member said, “I had some adjustments with dosage of my seizure medications, even a few seizures, but basically normal and uneventful pregnancies.”
Sleep loss can bring on seizures, which makes rest a priority. It’s one of several seizure triggers worth knowing. Build a sleep routine with your care team, and enlist your partner and others close to you to help you stick to the routine.
Labor goes smoothly for most people with epilepsy, and seizures during labor are uncommon. Still, it’s possible to have one, and a rescue plan helps. Share your seizure type, your triggers, and your medicine schedule with the hospital team. Ideally, you’ll take your medicine as usual during labor.
If a seizure does happen, medicine given through an IV can stop it. Medical experts also suggest planning for quiet time and sleep during labor.
Partners play a big role. Here are some ways they can provide everyday support.
The weeks after birth
bring new changes. Ask your neurologist to map out a postpartum plan no later than a month before your due date.
Seizures may happen more often or hit harder in the postpartum period, the time after birth. Birth is hard on the body, hormones shift again, and sleep gets scarce.
Your medicine may need to change again. If your doses went up during pregnancy, they’re often lowered in the weeks right after birth to prevent toxic levels of medicine from building up.
Call your care team if you notice dizziness, vomiting, or vision changes, which can be signs of too much medicine.
Sleep is the other big piece. One goal is four hours of sleep in a row each day, plus roughly two more hours of daytime naps. Partners or other family members can take night feeds so you can rest.
“With my second child, I gave in and let my husband and mom stay up with the baby at night while I slept,” shared a member.
Worries about caring for a newborn are real, and many members share them. “I always wanted a baby,” wrote one expectant member of MyEpilepsyTeam. “But now I’m scared that I won’t be able to look after it without fearing that I’ll have a fit when I’m holding it.”
A few habits can make newborn care safer. Simple steps help, such as diapering on the floor instead of a table, feeding while seated on the floor, and giving your baby sponge baths if you’re by yourself.
Most people with epilepsy can breastfeed. Studies back this up for people who take medicine under a doctor’s supervision. If breastfeeding isn’t a good fit, that’s OK. Talk with your care team ahead of time about breastfeeding because you may need to time your medicine around feedings.
Feeling anxious or down after birth is common, and it’s even more common with epilepsy. Tell someone you trust if you notice anxiety or depression. One in 10 women will experience postpartum depression, according to the International Bureau for Epilepsy.
Many parents also wonder whether their child will inherit epilepsy. About 6 percent of children who have a parent with epilepsy develop unprovoked seizures, compared with 1 percent to 2 percent overall.
Connecting with other parents who’ve been there can ease stress and feelings of being overwhelmed.
You don’t have to manage this alone. Stay in close touch with your neurologist, OB-GYN, and the rest of your care team before, during, and after pregnancy.
Slightly higher doses of anti-seizure medication than before pregnancy may be needed immediately after pregnancy due to less sleep and more stress.
If you learn you’re pregnant or are planning to become pregnant, call your doctor right away. Here are some questions to start the conversation:
With the right care team beside you, you can feel ready for each step ahead.
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