A recent study found only 55% of pregnant women with epilepsy consulted a neurologist during their pregnancies. Conducted by the University of Michigan, the study was presented this month during the American Neurological Association’s annual meeting. The statistic floored me. Any pregnancy involves a complex physical transformation. Given the multiple complicating factors epilepsy adds, that so many women did not seek their neurologists’ guidance confounded me.
I was engaged at thirty-eight, and my fiancé was a year older than me. We knew we wanted to have a family, and given our ages, we were on a fast track. I took two anti-seizure medications that did not fully control my focal impaired awareness seizures (aka complex partials). Given all these risk factors, I sought the neurologist’s advice well before I got pregnant. Mark and I moved in together in June 2005. Over the summer, I told Dr. Klein about our plans to have children, and she suggested taking me off Tegretol, which can cause congenital malformations. Dr. Klein switched me from Tegretol to Lamictal, which is safer. The transition took three months. The new medication combination was not great for my seizures, which were still uncontrolled. But they always had been. By late winter, the Tegretol levels were down to zero and the Lamictal was at a therapeutic level. I achieved my goal: I could get pregnant without worrying about teratogenic effects on my developing baby.
Once I had this green light, I was fortunate to be pregnant within a couple of months. The pregnancy was relatively easy—no morning sickness, I did not show for six months. I was three months pregnant on my wedding day, and most people didn’t know. While I was thrilled about this, my brain did not love pregnancy. I had more seizures, including one tonic clonic (aka grand mal). The neurologist increased my second medication, Keppra. Despite the neurological pitfalls, Liam was born perfectly healthy in January 2007. I was relieved and overjoyed by his birth. I also really wanted to have a second child: Liam deserved a sibling to keep him company during childhood. Where Mark and I had him so late, I also wanted him to have a sibling to be with him when we were older. Together, they could handle whatever challenges life presents our family later.
The risks that came with my advanced age scared me more than the possibility of increased seizures. I was 41 when Liam was born. A grant writer by profession, I gave myself a deadline. If I couldn’t give birth to my second baby before my 43rd birthday, I’d stop trying: I had until January 2009 to get pregnant. I’m good at meeting my professional deadlines, and when my body also cooperated, I was elated. I was pregnant by August 2008. I worried about age-related complications. I also worried about the possibility of having twins, as the gene runs in my family. Happily, the number and severity of my seizures was lower during my second pregnancy, perhaps because my body was familiar with the process. Even so, my neurologist adjusted my meds toward the end of the pregnancy, as I’d gained weight. Amelia was born in May 2009.
Both pregnancies required that I alter my medication regimen, something only my neurologist could do. Increases in weight or seizure frequency are two distinct reasons a neurologist might change patients’ medications. While not everyone’s seizure patterns change, most pregnant women gain weight. So, even women whose seizures are perfectly controlled would need their neurologists’ guidance, which is why the study’s conclusion baffles me. Excluding the neurologist from pregnancy care planning seems equivalent to taking a roll of the dice. How would I have known whether my anti-seizure medication was dangerous to the baby? What would I have done when my seizures got worse? Having a seizure while pregnant can lead to falling, which can injure the baby. I desperately wanted that guidance.
I’d managed uncontrollable seizures for decades, so I know that when you live with this condition, you’re taking similar gambles daily. What if I have a seizure today at work? Or while walking on the street, riding my bicycle, or out on a date? Prior to getting my seizures controlled, I didn’t overtly have these thoughts when I left my house every morning. My unease lurked deeply in my subconscious. I admit that living with refractory seizures almost numbed me to the risks I was taking. Perhaps that’s how the 45% of women in the study chose not to consult their neurologists during their pregnancies. They were so accustomed to risk-taking that it didn’t seem like a big deal.
For some of the women in the study, lack of affordable accessible healthcare access likely impacted their decisions, which is shameful. As the University of Michigan study’s lead, Dr. Chloe Hill pointed out, neurologists “play a key role in implementing risk-reduction strategies that improve outcomes for women [with epilepsy] and their babies.”
I am blessed to live in a town that has some of the best medical care in the country and to have the financial resources to access those providers. While I may not have focused on the risks my seizures posed before I decided to get pregnant, I scrupulously examined them after making that choice and throughout my pregnancy. Once I had my children, the risks my seizures posed to them are what gave me the courage to undergo elective brain surgery in 2014. The procedure was glitchy and required a follow up emergency surgery, but my seizures eventually stopped, a journey I described in my memoir, Seizing Control.
I am grateful to the neurologists who followed my pregnancies. Also, to my children both for boosting my bravery enough to have surgery, and for having enough courage of their own to watch me manage epilepsy and both surgery recoveries.
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