It was only a decade or two ago that scientists believed all anti-seizure medications caused major congenital malformations. These problems with the heart, brain, and intestinal tract required major surgeries to keep babies alive.
Thanks to ongoing research, we now know not all medications are to blame for these outcomes. This knowledge allows neurologists to work with patients to tailor their antiepileptic medications and dosages before pregnancy so mothers-to-be can control seizures while minimizing risks to their fetuses.
Active choices about medication options and making changes that align with life goals are all part of holistic care for women with epilepsy, but we’re not stopping there. As home to New Mexico’s only Level 4 Epilepsy Center and only Level 4 Maternity Center, we receive patient referrals from throughout the Southwest. Our trainees get hands-on clinical experience while building lasting relationships with patients and care team members alike.
In the U.S., there are more than 1 million women age 15 to 45 with epilepsy, and more than 20,000 babies are born to women with epilepsy each year. While many of these pregnancies are straightforward, some can be challenging. Women with epilepsy face more risks during pregnancy than other mothers, including:
- Seizures: During pregnancy, seizures can be dangerous for both mother and baby.
- Congenital malformations: Injury during seizure, genetic conditions, and exposure to certain anti-seizure medications can cause babies to be born with birth defects.
- Bleeding disorders: Some of the older generation of medications can increase the chances of a new baby having a bleeding disorder.
- Other complications: Such as preeclampsia, stillbirth, premature delivery, and fetal growth restriction.
Our trainees learn the value of working closely with patients to create a plan for pregnancy that helps to limit these risks. Thanks to ongoing research, we now understand how to better control maternal epilepsy with medications that reduce the likelihood of potentially serious side effects.
Seizures, Anti-seizure Medications, and Fetal Risk
More than 90% of babies born to women with epilepsy will be healthy, but both the condition and its treatments pose risks.
Many types of seizures, such as focal aware, focal impaired awareness, absence, and myoclonic seizures, don’t cause direct harm to a fetus. However, injury to the mother during a seizure can harm the pregnancy. Tonic-clonic seizures can cause miscarriage and serious harm to the mother and fetus.
These risks mean it’s important to prevent seizures while pregnant, yet antiepileptic drugs come with their own considerations.
Medications to control seizures can cause teratogenic effects—abnormalities caused by exposure to substances or chemicals during pregnancy. These can include:
- Congenital malformations such as heart disease, cleft palate or lip, brain and spinal cord development problems
- Slow growth in infants
- Microcephaly, a rare condition when the baby’s head is smaller than expected
- Nervous system development disorders
- Urinary tract development complications
We train our residents and fellows to work with patients to maximize control of seizures while minimizing fetal exposure to medication effects.
Related reading: Could Better Epilepsy Detection Prevent Alzheimer’s?
Preconception Counseling Helps Patients Prepare
Recent research has revealed more options for anti-seizure medications that offer a better opportunity to plan a safe and healthy pregnancy. For instance, we know now that some medications are safer to take during pregnancy. They have not been linked to increased risk of abnormalities at birth, development problems, or preterm birth. These medications include:
- Lamotrigine (Lamictal)
- Levetiracetam (Keppra)
These safer options mean the best time for patients to talk with a doctor about epilepsy and pregnancy is before conception. The American Epilepsy Society recommends that all people with epilepsy between the ages of 15 and 45 should have preconception counseling. During these planning sessions, patients and providers talk about expectations, learn about pregnancy and epilepsy, and work together to identify ways to reduce the risk and optimize outcomes.
Patient and doctor make decisions together about the best seizure control medications before conception. Identifying the right medication and dosage can reduce the potential risks to the mother from seizures, and to her potential baby from teratogenic exposure.
Personalized treatment is possible because of research that has been powered by the experiences of many mothers-to-be as they pay it forward to a new generation.
Related reading: Epilepsy Surgery at UNM Health Sciences Center The Latest Procedures and Devices
Research Benefits the Next Generation of Mothers
When a woman with epilepsy becomes pregnant, her doctor will recommend she take part in a registry. These efforts collect data on women with epilepsy and their pregnancies so we can learn more.
Started in 1997 at Massachusetts General Hospital in Boston, the North American Antiepileptic Drug Pregnancy Registry works to gather and publish data on how often major malformations, such as heart defects, spina bifida, and cleft lip, occur in babies whose mothers took one or more anti-epileptic drug to prevent seizures or treat a medical condition in pregnancy. It was the first hospital-based registry to determine the safety of seizure medications during pregnancy.
These registries are voluntary, and I encourage my patients to participate. During three phone calls over the course of the pregnancy, participants speak with registry staff to learn how they and their baby are doing. These patients agree to allow access to pregnancy- and infancy-related medical records—the data collected is invaluable.
Registries all over the world are tracking data on more than 20 medications, providing regular updates so doctors and patients can choose the best anti-seizure drug with the fewest risks.
Related reading: 6 Learnings on My Journey from Medical Student to Epilepsy Attending
New Knowledge Updates Our Practice
Our understanding of epilepsy management in pregnancy has come so far in the last decade that it has changed our practice. With up-to-date information on drug effects, preconception counseling is now a critical part of caring for potentially birthing individuals with epilepsy. These conversations provide an opportunity to tailor our treatment to each patient’s goals and plans.
This is a major shift in how we train residents to approach care for their patients, prescribing medications to control seizures with an eye on the potential for intentional or unplanned pregnancy.
Conversations about topics such as contraception (to prevent unwanted pregnancy), folic acid (which has been shown to be protective against malformations), and proper seizure control prior to pregnancy are important parts of how we provide proactive care.
Active clinical research in our labs examines data about women with epilepsy and their pregnancies here at UNM Health Sciences Center. When complete, these studies will give us more information about how medication levels change during pregnancy and the importance of adjusting doses to control seizures.
Pregnancy can be challenging when you have epilepsy, but the vast majority of mothers will have healthy babies. New knowledge about which medications are safest means even more women can experience the joys of motherhood with seizure-free pregnancies and healthy, happy babies.