​Planning for Pregnancy: 9 things to know - Reeve Foundation

Like many of you prospective moms or women living with paralysis who are curious about childbearing and rearing, I wondered how on earth I would be able to carry a child and manage pregnancy, not to mention caring for an infant afterward. So, where did I start and what did I learn through my own first-time pregnancy last year? Here are nine things to help you think ahead:

1. Plan if you can. I know surprises happen, but as women with SCI, we’re no strangers to planning ahead. Whether you are sexually active with no intention of conceiving, or looking to have a baby, it’s wise to at least think about where you could find support in the event you become pregnant and have a baby. Ask family members or close friends if they would be willing to support you and how. Can they babysit a few hours a week? Or help with meal prep? Can they organize a meal train during or after pregnancy? Is your caregiver (if you have one) willing to help you with things like breastfeeding and diaper changing? If you have a partner, can they work from home? Lay this all out on paper to visualize where and when you will need the most help.
2. Find women online who have been there. Support groups on Facebook are a great place to start. Look for private groups dedicated to spinal cord injury support, or better yet, women’s wheelchair groups. “The Wheelchair Mommy Mommy Group” is a great one. A request to join the private Facebook group will be carefully reviewed in order to keep the membership exclusive to women with paralysis. Handy tip: once you join, perform a search in the group for keywords like “pregnant,” or “baby,” or “labor and delivery,” and then read all the posts and comments to discover the multitudes of experiences and information. I would also suggest following the hashtags #WheelchairMom or #DisabledMom on Instagram to discover our rich community of moms online.
3. Consult with a specialist. It’s normal to feel on the fence about pregnancy. You might be conflicted like I was over the extra challenges posed by parenthood or by fears of pregnancy while managing SCI complications. What helped me was arranging a consultation with a high-risk pregnancy doctor. (Women with SCI don’t necessarily need a high-risk obstetrician, but the option is there.) One of the advantages of the high-risk obstetricians (who should be board-certified Maternal-Fetal Medicine subspecialists) is that they regularly care for pregnant disabled women, or women carrying babies with genetic conditions or disabilities, so they typically will have a better bedside manner when it comes to disability than the average doctor. During my consultation, I asked the specialist every single question I had and addressed my laundry-list of anxieties. I was pleasantly surprised that she was very knowledgeable on SCI vis-à-vis pregnancy. She was also supportive. If you ever have a doctor that is not supportive on the basis of your disability alone, say goodbye. Find someone who will be on your side.
4. Create an exercise plan. Parcel out time each day to exercise during pregnancy. Trust me, your post-partum body will thank you. There will be added strain on your back, your posture may change due to your seating habits as your belly grows, and these things can cause misalignments, tight muscles, compression, and musculoskeletal imbalances. If you are too fatigued during pregnancy to get any type of cardio exercise, at the very least, keep up with a range of motion exercises.
5. Research breastfeeding versus bottle feeding. Feeding a newborn can be demanding, maybe even more taxing than the pregnancy itself! For some women, breastfeeding makes things easier and more convenient. For others, bottle feeding may actually be easier than nursing, requiring more strength and dexterity. When I stopped being able to provide breast milk, I felt guilty because there was so much talk about “Breast is best.” Whether you decide to nurse, pump, or provide formula, or a combination of any of the above, know that actually, “Fed is best,” and this is an important reminder for moms with disabilities for whom breastfeeding, and pumping may or may not be accessible.
6. Home Accessibility. Look around your home and see what repairs or upgrades can be made to give you a more accessible space. This can help ease some of your challenges, which can compound when starting a family. Personally, I felt that being able to cook independently would be important to me as a parent, so I had a small roll-under kitchen island built complete with a small prep area, two-burner cooktops, and a bar sink. (It was also much more affordable than remodeling an entire kitchen.)
7. Start a baby registry early. Start early because you may want to do a lot more research in finding the products that work best for you or are adaptive. The Facebook support groups mentioned above are chock full of threads on the topic. Again, just use the search box, and look up “registry” to see what other moms with paralysis have used. (One of my favorites, by the way, has been a seat that attaches to a table so I can roll right under it for feeding. It can also swivel around 360 degrees so I can opt for any angle of access to my baby.)
8. Consider scheduling a baby shower earlier than usual. Not all babies born to women with spinal cord injury come early, but many do, though you will find little to no medical research on this topic. I decided to schedule my baby shower before 30 weeks. Given that I was pregnant with twins and thus had an even higher risk of pre-term labor, I was even more resolved to have the celebration early, plus I didn’t want to be too uncomfortable.
9. Read “The Disabled Woman’s Guide to Pregnancy and Birth” by Judith Rodgers. Even though this book is not limited to spinal cord injuries, I found it incredibly useful as many disabilities have both medical and lifestyle crossovers. The subjects covered included: an introduction to ninety women and their specific disabilities; the decision to have a baby; parenting with a disability; emotional concerns of the mother, family, and friends; nutrition and exercise in pregnancy; a look at each trimester; labor and delivery; caesarean delivery; the postpartum period; and breastfeeding.

Daniela (Dani) Izzie is a quadriplegic and mother to twins. She is an employee of wheelchair wheel manufacturer, Spinergy, and lives with her husband, Rudy, in rural Virginia. She is a disability advocate and is passionate about elevating the voices and stories of parents with disabilities. She is also being featured in a documentary film called “Dani’s Twins” set for release in 2021. You can catch the trailer here and follow film updates on Facebook.