Pregnancy With a Disability: A Series

I have wanted to experience pregnancy and motherhood for as long as I can remember, but due to Cerebral Palsy, a physical disability that affects my muscle control, I was unsure whether it would be possible. When I found out I was pregnant in December 2020, I was equal parts ecstatic and terrified, which are two very common emotions when women first learn they are expecting. For me, though, there was an undercurrent of “Can I really do this?,” “What barriers will my disability cause?” and “How will my pregnancy be different than able-bodied moms?”

Not surprisingly, there is very limited research on Cerebral Palsy and pregnancy. Prior to getting pregnant, my OB-GYN and I talked extensively about how my disability could complicate things. The main point she brought up to me was being unsure whether I’d have the capability to deliver vaginally due to the spasticity I experience as a result of my Cerebral Palsy. Therefore, she referred me to a Maternal Fetal Medicine Specialist to get some answers based on my specific circumstances.

At my Maternal Fetal Medicine appointment, I was asked to talk about my Cerebral Palsy and how it impacts me on a daily basis. I discussed my spasticity, the fact that my CP primarily impacts my hips and legs, and my lengthy surgical history. The first doctor I spoke with (we’ll call her Abigail) had done some research on modes of delivery for CP pregnancies. As it turns out, the most recent study available was from 1992, the year I was born. The research highlighted that those with Cerebral Palsy who had undergone surgeries on their lower extremities as children were more likely to require a C-section than those that did not….aka women like me. This wasn’t a shock to me, but I think a small part of me had hoped that vaginal delivery was an option. The next part of the appointment involved an exam to assess the range of motion in my hips and legs. I knew without even attempting to get into the positions they asked that my body wasn’t going to cooperate. Ever since I had reached the age for pelvic exams, I had never been able to put my feet in the stirrups at the doctor’s office due to the limited mobility in my legs and hips. However, not wanting to leave any stone unturned, I tried anyway.

As expected, the mobility wasn’t there. Abigail then informed me she wanted to bring in her boss to get her opinion as well. “The more, the merrier,” I remember saying. Abigail smiled and went to get her colleague, Danielle. Once both doctors returned, I was asked some of the same questions as before, but these were focused specifically on the surgeries I had as a child. Danielle happened to be the head of the high risk pregnancy department. I felt like I was getting special treatment or that something was very wrong. Thankfully, neither were true. She then informed me that she had no one in her department with knowledge on pregnancy and Cerebral Palsy. Instantly, my hope dissipated. But then, Danielle’s phone rang. “I’ve got a specialist on speed dial,” she said, before leaving the room. She came back in a few minutes later, and the call was on speaker phone. Daniel informed me, “My daughter, Lexie, is a pediatric orthopedic surgeon. She has much more first-hand knowledge and experience of the specific surgeries you’ve had, so I’d like to get her input.” I nodded, then introduced myself and began going through my surgeries one by one. Lexie then asked me where I had my surgeries and if I remembered the name of the doctor who performed them. Not only did I know who operated, but I also remembered the exact medical terms for all the surgeries I had undergone. The doctors at the Maternal Fetal Medicine Clinic seemed impressed by this. If they only knew the reason I remembered these things so vividly was because of how traumatic they had been for me as a child.

Then, Lexie said something that made my jaw hit the floor. “The doctor who performed your surgeries…he was my primary mentor and teacher.” What a small world, I thought. She then informed me he now practiced at a children’s hospital in San Francisco, and I couldn’t help smiling about what a reach my disability and life truly had. She then asked me a question I’ll never forget: “What is your preference for how you’d like to deliver?” I knew this question was coming, but it still surprised me. By this point, though, I had made up my mind. “I’d like a C-section,” I said. “They’re done all the time, and giving birth is going to be hard enough and full of anxiety. I don’t want to also be spending that time worrying about whether my body will cooperate from a mobility standpoint.” And that was it. It was decided. I’d have a scheduled C-section.

Before Lexie disconnected the call, she said, “Congratulations on the pregnancy.” She didn’t know that I wasn’t currently pregnant at the time, but the sweet gesture made me smile. For the first time, this felt not only very highly possible, but I’d learned that I’d have a stellar team of high risk doctors keeping a close eye on me once I became pregnant.

My partner and I found out we were expecting on December 21st, 2020, just a few days shy of Christmas. Since then, this journey has been nothing but a whirlwind. A scary, exciting, anxiety-ridden, wonderful, beautiful whirlwind. I think I knew even on that very first day of learning such life-altering news that I was about the embark on the most amazing journey, and boy was I right!

Come back next week to read my next blog post, titled “Pregnancy With a Disability: The First Trimester.”