I’ve always joked that I’m either a very healthy sick person or a very sick healthy person. I feel totally fine most of the time, but I have 3 serious health conditions that I take prescription medication for: ulcerative colitis, depression, and epilepsy.
Were these medications safe to take during pregnancy?
I don’t spend much time thinking about these conditions because, as long as I take my medication, I rarely have any problems. But when I was 30 and my husband and I wanted to have a baby, suddenly these medications that I’ve been on for years became scary. Were they safe to take during pregnancy? Would they cause short-term or long-term harm to my baby?
A Doctor for Each Condition.
I have a special doctor for each of these conditions: a gastroenterologist for ulcerative colitis, a psychiatrist for depression, and a neurologist for epilepsy. I made appointments to talk to each one of them before starting to try to get pregnant. And, because I’m a researcher in my professional life, I also did a little homework on my own. My experiences with the three doctors were so different from one another.
First, the gastroenterologist.
My gastroenterologist came to the visit and immediately rattled off the most recent, important findings from the scientific literature. She suggested a slight change to my medication based on a new study and described how the risks to my baby would be extremely minimal based on my particular medication regimen. I could tell she’d really spent time thinking about the best course of action for me specifically, and I did not hesitate to accept her suggested medication change.
Next, the psychiatrist
I also had a good experience with my psychiatrist. I hadn’t experienced a depressive episode in almost 10 years, so I was strongly considering going off my anti-depressant medication. This psychiatrist has known me for a long time, and she frequently works with women who are experiencing pregnancy-related mental health issues like postpartum depression. She basically sat me down and said, “Look, I know you really well, and I’ve seen women at this crossroads a million times before. You’re on a low dose of a low-risk antidepressant. If you experienced a major depressive episode right now, that’d be way worse for your baby than minimal exposure to this medicine.” I trusted her judgment, not just as a psychiatrist but also as someone who has known me for years, so I stayed on my medication.
Last up, the neurologist
Unfortunately, I did not have a positive experience with my neurologist. The medicine I take for epilepsy is the one that would pose the most risk for a baby, so I was really concerned about it. I showed up to our appointment having read the most recent articles on the links between various anti-seizure medications and some pretty serious birth defects. I wanted to have an in-depth conversation with her about the pros and cons, but she was unfamiliar with the research and very dismissive of my concerns. She thought I should stay on the medication but didn’t say why or even acknowledge that this was a difficult decision.
I felt like any decision was the wrong one.
The next few weeks after that appointment were terrible for me. I felt like any decision was the wrong one. I hadn’t had a major seizure in years, so maybe I should go off the medication? But as soon as I came to that conclusion I’d start thinking about what would happen to the baby if I were to have a seizure while driving or in some other situation that would put the baby at serious risk. Then I would change my mind and decide to stay on the medication. But as soon as I felt like that was the right course of action, I’d start thinking about how it would all be my fault if my child turned out to have birth defects.
I felt really alone this whole time.
And I basically stayed in this cycle for weeks, convincing myself of one choice, feeling scared or guilty, and then changing my mind, over and over. I felt really alone this whole time. My friends didn’t have to make choices like this with their pregnancies because they didn’t have major health issues. My husband was very loving and understanding and said he would 100% support whatever choice I made but that he didn’t want to make the choice for me because it was my body.
After weeks of torturing myself, I finally decided to stay on the anti-seizure medication.
I’m not sure I can really explain why I made this choice – it just felt like the least bad option out of 2 bad options. But the experience of making the decision was so awful, and I realize now that it didn’t have to be that way. I felt alone, but I wasn’t. It turns out that many, many women have to make decisions about pregnancy and medication, and there are resources for women making this choice, like the Treating for Two website.
Editor’s note: another reader shared this website with us that exclusively focuses on antiepileptic drug use and pregnancy. Along with offering support for women struggling with the decision about staying on vs coming off their medications, it also allows you the opportunity to participate in research to help gather much needed data about antiepilectic medication use in pregnancy. More information can be found here.
Knowing what I know now.
This experience was 3 years ago. My son is now 2.5 years-old, and I’m pregnant again. This time around things are totally different. I found a new neurologist, and he has been great when I was planning this pregnancy. We talked at length, he acknowledged my concerns, we reviewed the research, and we came to a decision together. I don’t feel like I’m walking around with this huge burden that no one understands. My daughter is due next month. There are plenty of things I’m worried about—like how to care for a toddler and a newborn at the same time—but I’m not kept awake at night with worrying about my medications.
My advice for other women in this position would be:
- Know that you’re not alone. Tons of women are faced with this decision, and you can find resources to help you on the Treating for Two website.
- Make sure you talk to your provider before you start trying to get pregnant. It might be the case, like with my ulcerative colitis medication, that one small change to your medicine or dose could remove a lot of the risk.
- Speak up about your medication concerns with your doctor. Your doctor should be willing to talk to you about the pros and cons of different choices. And if he or she isn’t willing to have that conversation, try to find a different doctor.