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My Fears About Being a Mom with Epilepsy


Because I have epilepsy, I had decided that, when the time came to have children, I would be adopting. This was compounded by the fact that I was on a medication that was high-risk to take while pregnant. But, when I had a spiritual realization that I would give birth through my own body, my husband and I made a plan: I would have to transition medications before getting pregnant.

My greatest fear in life, until that point, was that I would have a seizure. The medicine transition was like walking through fire; I was petrified. I had been seizure-free for five years. I held the thought of that baby in my head: the reason I was doing this. I put Post-It notes of ideas I had of the child: holding onto my finger, smiling up at me. The five-week transition went smoothly and, eight months later, we were allowed to start trying. 

When we got pregnant, we worked with a high-risk OBGYN at the same hospital as my neurologist. In the beginning, I had blood tests all the time and had to increase my medicine incrementally to keep up with the increased blood in my system. I drew strength from the ultrasounds. He would kick around and make us laugh. I marveled at how this little boy, who wasn’t even born yet, had already inspired me to look directly into my fears in order to bring him into our lives.

As I anticipated labor, I had the good old-fashioned womanly fear of pushing a kid out of my body. I was anxious about seizing during labor due to hyperventilation, a method they use to test for seizure activity. Ironically, once I was in labor, I was less concerned about having a seizure. With an epidural in, I wasn’t hyperventilating and I was able to sleep, which relieved some body and mental stress. I was startled to discover I trusted myself to get through it. I focused on my not-so-little son who, after 31 hours, finally popped out.

And there he was. My treasure. The reason that I had done it all. The one who had spent months kicking my right ribs and had lodged himself in my left hip flexor. The one to whom I had sung songs night after night, who I had whispered to, who I had patted. There he was, wrapped in a blanket, in my arms with my husband admiring him next to me. He who had helped me grow such courage, such sheer force of will to bring him into existence. It had happened. I had done it. And I hadn’t had a seizure the whole time.

The next several months flew by. I tried to sleep as much as I could so that I didn’t lower the threshold for a seizure. We adjusted the medication dosages per the doctor’s orders. I got blood tests done.

We watched our son become a little person. I felt so strong; I had conquered my fears and had had a child at the same time. I couldn’t wait to tell him about it when he got older.

And then it happened.

After two years of planning, transition, trying, pregnancy, labor, delivery, and post-partum without one…I had a seizure. I had re-started my birth control several weeks earlier; it had crossed with the new medication and I was sleep-deprived from an emergency room visit the night before with my son. I had not been told about the drug interaction possibility. Irrationally, I was disappointed that, even though I’d faced my fears, I still hadn’t made the epilepsy go away.

Since then, I have struggled to accept that I am a mom with epilepsy. That means I could have seizures while I am with my son (and now my daughter, too) and it means one of them could inherit it. I kept my epilepsy from my children, in the hopes that they wouldn’t be frightened of me or my vulnerabilities. While writing this article, I finally found my courage and explained my epilepsy to my 4-year old in age-appropriate terms. I was stunned by how easily he took the news, the questions he asked (if during a seizure my brain didn’t work a little, did that mean I was dead?) and how safe I suddenly felt, having told him.

I hate that I am not infallible; in my head, as a mother, I should be. But I made it through the pregnancy and the first talk. Hopefully, it will get easier from here.

The opinions expressed here are the personal views of the author. Comments are moderated, so use your inside voices, keep your hands to yourself, and no, we're not interested in herbal supplements.

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