Becoming a mom with Muscular Dystrophy, Part 1

What is it like being pregnant and parenting while living with Muscular Dystrophy?

That is a question I often get from those living with MD who are considering becoming pregnant. So many thoughts, feelings, fear, and worry that come along with this big decision.

One of the first thoughts that comes to mind is, “Will my child be born with my condition?” If my child is born with my same condition, am I going to feel guilty? Is it going to be too painful to watch my child go through all the hardships that they will inevitably face living with a condition that hinders you so much physically?

Another thought that came to mind was, “Will my body be able to sustain a pregnancy, and where will I be physically after the baby is born?” You worry about what it will be like for your child to grow up with a mom who has a disability. Will they feel like that is a heavy burden that constantly feels overwhelming to them? Will they be embarrassed? These are all thoughts I had leading up to finally making the decision that my husband and I would try to have a baby.

Fortunately, I got pregnant easily with our first child, which was such a blessing. The first few months were common pregnancy symptoms. I had morning sickness and overwhelming exhaustion.

During my 28-week visit, my doctor, who was taking some extra precautions due to my disability, decided to monitor me and the baby. She noticed I was having some contractions. She sent me to the hospital, where, thank goodness, they were able to stop the contractions. I went home on a modified bed rest. I had to stop working. The bigger my baby grew, the harder it became to get around. I used a wheelchair when I went out but could get around our small house okay just walking and holding onto things.

As the delivery neared, my doctor encouraged me to have a C-section. She was not sure I would be strong enough to push a baby out. I wanted to give it a go and try to avoid a surgery. I knew a C-section would be a hard recovery for me. Manipulating my already weakened core would make things even more difficult for me. After 12 hours of labor, an only partially working epidural, and not progressing much, my doctor insisted on the C-section. By that time, I was wishing I had made that decision from the get-go. I was proud of myself for trying. I will always be glad I did. My son Luke was born a healthy and beautiful baby.

Recovering from a C-section is no joke. I spent several days in the hospital following Luke’s birth. I was on pain medication, as it was a major surgery. I was not sleeping well because in a hospital no one sleeps well! I was given some sleeping medication the first few nights. One night, I needed to use the restroom in the middle of the night. My husband called in a nurse to help him with me because it was so hard for me to walk. They encourage walking to help with the healing from the surgery, so that is what I was trying to do. The effects of the medication on top of that made walking even more difficult.

The next evening, my husband had gone out to get our dinner. Luke was in the nursery under the bili light because he was slightly jaundiced. I was enjoying some quiet time when a social worker stopped in. She came because the nurse that had helped my husband the night before had been concerned that I was not capable of caring for my son because I could not walk on my own after a C-section. I was stunned and so angry at this woman in my room. I had just survived a pregnancy as a disabled woman and delivered a healthy baby boy into this world. I thought, you are not about to take that away from me. Not only was I confident I would be able to take care of my son, but I also knew I would tackle more obstacles than she could imagine with a smile on my face, as I had done my whole life. I told her just that.

The nurse had not researched my chart to know of my disability was the explanation that I was later given. She assumed I was over medicating, and that is why I could not walk. I still become emotional when I allow myself to go back to that moment.

My worst fear had come true. The fear that someone would view me as an inadequate mother, and I had not even left the hospital with my son.

Luke and I went everywhere together. If we had our stroller or a cart, we were good! Many adaptations were discovered through trial and error. What we did looked different from most, but it worked for us. There were many physically taxing days to the point that my husband had to carry me to bed. Working while juggling a child and a household is hard. Stacking a physical disability on top of that makes everything more difficult. It also makes successfully navigating those times even more rewarding.

Becoming pregnant as a woman living with Muscular Dystrophy, I was certainly walking humbly courageous into the unknown. I did not have anyone to look to for guidance who was in my same shoes. I hope that by sharing my story, it helps someone feel as though they have a guiding light. People with disabilities are just as capable and deserving of being parents as anyone else is, no matter how that comes to be.

Until next time …

Amy Shinneman is a former National Ambassador for the Muscular Dystrophy Association, disability blogger, wife, and mom of two boys. You can find her blog at humblycourageous.com and reach her on Instagram @ashinneman.