My story is a long and winding road, and I hope in the end it can give others a look into both pregnancy as a wheelchair user and infertility. Before we began our journey, I really wish I knew more female wheelchair users who had troubles getting pregnant and carried a pregnancy, as well as different tips and tricks for a changing body. It would have been helpful to look to others for advice. My husband and I documented the majority of our pregnancy on season three of the show 9 Months with Courteney Cox and shared our fears, tears, and pure joy with the world. I hope that by sharing our story, perhaps others can reach out to us for help, advice, and someone to lean on along the way.
Jessica, Jason, and their dogs
Deciding to Grow Our Family
Living as a person with a disability has its challenges. As a result of a motor vehicle accident in 2003, I am a T-12 incomplete paraplegic. Over my many years as a wheelchair user, I have generally figured out ways to make things work for my specific needs and have done my best to prepare for what life throws at me. However, when my husband and I decided to have a baby, I was absolutely unprepared for what I would unknowingly go through.
NY Fertility Clinic
In 2009, my husband Jason and I got married. We thought we would get pregnant right away, not knowing how long it may take to achieve pregnancy or if I could even get pregnant. I honestly wasn't sure if my injury would hinder my ability to do so. Two years went by and no pregnancy, no baby. We did what any other couple longing to have a child would do and say a fertility specialist, CNY Fertility, in 2011. Little did we know that the staff and doctors at CNY would become a family to us and we would be patients at this clinic for ten whole years.
Accessibility
Our clinic always bent over backward to accommodate my needs. CNY Fertility has accessible parking, zero-entry doors, a large waiting room, accessible patient bathrooms, and an exam room with a lower bed/table. The staff always made sure I could safely transfer to operating room tables, and brought treatments like acupuncture, infusions, blood draws, and prenatal massage right to me when needed. When it came to accessibility, that was the easy part of our fertility journey!
Fertility Treatments
I have found that a lot of people automatically assume we went the route of in-vitro fertilization (IVF) because of my paralysis, which was not the case. Statistically, 1 in 8 couples has trouble getting pregnant. When we first became patients at CNY Fertility in Syracuse, NY, it was found that we had "unexplained infertility." This meant there was no reasoning behind why I couldn't get pregnant and also that my disability was not hindering us either. At first, we tried several fertility medications to become pregnant naturally. We then moved on to trying intrauterine insemination (IUI) nine times. Neither of these strategies worked. By then it was 2018 and our doctor, Dr. Kiltz, knew it was time to try something different.
In-Vitro Fertilization (IVF)
I was hesitant and not willing to do in-vitro fertilization at first, because even IVF doesn't guarantee that you will bring a baby home. Moving on to such invasive procedures and high doses of fertility medications, including several shots a day, was scary to us. However, Dr. Kiltz, Jason, and I knew if we wanted to have a baby, this was the next step.
We unfortunately found out that we had no IVF insurance coverage and that this journey would be "out of pocket." After much deliberation and taking out a bank loan to fund our dream, we moved forward. Our kitchen counter and refrigerator were stocked with IVF medications several times over. I endured hundred of shots and four egg retrieval procedures from 2018 to 2020. Those egg retrievals resulted in, respectively, zero, zero, nine, and nine frozen embryos.
Over the course of a few years, I repeatedly prepared my body for frozen embryo transfers (FET) through shots, oral medications, acupuncture, message, and diet change. Heartbreakingly enough, we hit another wall. I kept getting pregnant but would lose the babies early on. I ended up having five miscarriages and wasn't quite sure how much more my body could handle. Already living with a disability where my body doesn't quite do what I need it do do, could I endure much more? I ended up so depressed and felt entirely along in the world. What was wrong with me and why couldn't I keep my babies safe? Our hearts were aching, but the support around us was undeniably strong.
During this process, I had a few special women in my life who offered to be our gestational carriers (GC). They were selflessly going to give us this gift and for that I will always be grateful. We were prepared to make the decision to go the GC route when we ultimately decided to try on our own one last time. Finally, on our ninth embryo transfer, 11 embryos later, we ended up pregnant with our little girl. From there, a whole new tough journey began.
Jessica and Jason's 11 embryos they transferred over two years
A Wheelchair User's Pregnancy
As a person with a disability, when changes happen to your body, you have to find ways to adapt. Gaining weight and an ever-changing center of gravity proved to be challenging in my case. I am usually fairly independent in my daily life. Working, volunteering, driving, lifting, cooking, cleaning, toileting, and showering were suddenly extremely hard for me. I couldn't easily transfer to my shower chair and toilet anymore or lift my wheelchair over my growing belly into my car. Change was indeed upon us!
Adapting to Change
I almost had to learn to do things all over again. I felt like it was 2003 and I was newly paralyzed and learning a whole new way of life. Transfers started to get the best of me as I gained weight and my arms didn't feel as strong as they had before. After a fall between my shower and wheelchair on the morning of my baby shower, I decided to purchase a slide transfer board. I had not used one in over 15 years, but I knew that I needed to keep my baby and myself safe. Using the board to get in and out of the shower or on and off the toilet became essential. We also had to take the box spring out from under our bed's mattress so that it was five inches (127 mm) lower, allowing me to transfer more easily. When arriving or leaving work as a Pre-School Teacher's Assistant, my Principal, School Nurse, or Social Worker would come to my car and help me with my wheelchair. Both Jason and my sister Sandy would take turns taking days off work to accompany me to my Maternal Fetal Medicine (MFM) appointments because I could no longer easily attend on my own. Accepting help because of my changing body was one of the hardest things to do mentally as the pregnancy progressed.
Another challenge I faced while pregnant was hyperemesis gravidarum, a severe sickness during pregnancy. From nine weeks pregnant until about an hour before I gave birth at 39 weeks, I had nausea and vomiting 24 hours a day. When you're a wheelchair user and you try to make it to a trash can or a bathroom at work, out in public, in bed, or even while driving a car, it can be tough. Eventually I was on four different medications to control the nausea. I learned very quickly that hose little blue motion sickness bags the doctors give you can be super helpful.
Jessica and Jason at their baby shower
Giving Birth
After 39 weeks, the time came to prepare for the delivery. My medical team was meticulously prepared when the day of the scheduled C-section arrived. Many people with spinal cord injuries can experience things like autonomic dysreflexia (AD) during medical procedures. I talked over this concern in length with the anesthesia team to make sure everyone was comfortable before the surgery. We also talked about the epidural, my injury level, and what to expect during the procedure. We all went in confident that we could work as a team to bring our little girl into the world.
My husband helped me to transfer onto the stretcher that morning and from there, the team wheeled me into the operating room. With help from the nursing team, I was prepped and given the epidural in my spine. It was odd not being able to feel below my chest because as an incomplete paraplegic, I normally have sensation. I was panicking in my head because I thought I was feeling it all, when in reality I was merely feeling the tugging, pulling, and stretching. With a few small complications and a short time later, she was here. Our beautiful little rainbow baby was finally in our arms.
Jessica and Jason in post-op recovery with their daughter
Recovery
The medical team brought us to recovery where we bonded, in disbelief, that we were finally a family. Shortly thereafter, we were wheeled to our room on the maternity floor.
Recovering from a major surgery like a C-section was difficult but doable. When you are hospitalized, it is very important to speak up for the things that will make the stay easier for you. You know your body & your needs best, and communicating that to your medical team is key for health and safety. For the first few days I asked them to leave the catheter in so that I didn't have to transfer in and out of bed. Less movement would cut down on the chance of the wound opening up on me. They agreed so long as it remained healthy for my body. The hospital also made sure that I had a bedside commode to transfer to so that I didn't have to move far once the catheter was removed. We confirmed ahead of time that I would have an accessible bathroom/shower within the room as well. Overall, having a single room where we could be comfortable and have the needed medical equipment was ideal.
After five days in that room, healing and learning how to manage a newborn, it was finally time to take our new little miracle home. With all the help in the hospital, I was a little nervous to figure out how to be a mama from my wheelchair, but that is something we would learn along the way and a story for another day.
Jessica and her daughter in their hospital room
Worth the Wait
Through my experiences over 12 years trying to grow our family, I learned that patience, determination, and persistence can pay off in the end. I wasn't sure during our fertility journey that we would get to where we wanted to be, but I hoped and prayed the entire time that we would. Every day, looking at my little girl, I know that everything we went through brought her to us, and for the reason, I wouldn't change a thing. I would ensure every single IVF shot again, because she was worth the wait.
Jessica and Jason's daughter surrounded by a rainbow created by most of the IVF needles, vials, and prescriptions used
About the author
Jessica is a 20+ year T-12 incomplete paraplegic wheelchair user as the result of a motor vehicle accident in 2003. She lives in Central New York with her husband, daughter, three dogs, and cat. In her spare time she enjoys spending time with friends and family, listening to podcasts, and being outdoors. In 2013 she was crowned Ms. Wheelchair New York and competed for the title of Ms. Wheelchair America in California in 2014. Her proudest endeavor is becoming a mom to her rainbow baby.
Jessica's ride is a Quickie Nitrum.
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