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Pregnancy and Childbirth With SMA: My Experiences

Posted on February 02, 2022
Article written by
Lisa Velez-Batista

Soon after my diagnosis of spinal muscular atrophy (SMA) type 3, I decided to start a family while I was still relatively strong. When I found out that I was pregnant, I was elated, but I wondered how SMA might affect my pregnancy.

Educating Doctors

After I educated my OB-GYN about SMA, he decided to classify me as high-risk as a precaution because he didn’t know how my condition would affect my pregnancy. “High-risk status” meant that I had more frequent visits so that they could monitor me as my pregnancy progressed.

I decided to visit a neurologist with the hopes that he could give me an idea of what to expect.

I was disappointed that the neurologist hadn’t heard of SMA. I explained that it was a neuromuscular disease that caused muscle weakness and frequent falling and made walking and climbing stairs difficult.

After examining me, he stated that it would be very difficult for me to care for an infant. He then asked me if I wanted to keep my pregnancy. I emphatically answered, “Yes, of course I do!” After leaving his office, I realized that no one had answers and that I would have to wait and see how my pregnancy unfolded.

Fear of the Unknown

My mind was flooded with unanswered questions. If I fell, would I hurt the baby or miscarry? Would I be able to walk with the added weight of the pregnancy, or would I need a wheelchair? If I started using a wheelchair during pregnancy, would I regain my ability to walk after I gave birth?

Thankfully, I only fell once — on my knees — when I was in my sixth month, and the baby was unharmed. Walking and climbing stairs became a little more difficult, but I got through the pregnancy without needing a wheelchair.

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Labor and Delivery

I went into labor five days after my due date. After hours of pushing, the doctor decided that a C-section was necessary — not because of my SMA but because the baby was too big. Soon after, I was awoken from general anesthesia by a nurse calling my name. I then heard the most beautiful words ever spoken to me: “Congratulations! You had a baby boy, 9 pounds and 1 ounce.” It was my proudest moment, and all the fears of SMA prohibiting me from becoming a mom were gone.

A couple of days later, a nurse instructed me to get up and out of bed. I was still very weak and told her that I couldn’t get up. She answered with, “All the other moms are getting up.” I informed her that I was not like the other moms. I told her to read my chart because I have a neuromuscular disease. The next day she returned and asked if she could help me up and into a chair. I agreed and told her that I just needed a little extra time to gain my strength back.

Nineteen months later, I gave birth to my second son via natural childbirth. The recovery time was shorter, but I still needed extra time to restore my strength. When I returned to my room, I let the nurses know that I had weak muscles and might need extra time to recuperate. They were happy to give me the extra time that I needed.

My Advice for New Mothers

Take time to enjoy your pregnancy without worrying too much. Make sure you inform the doctors and nurses of your limitations and needs. Don’t assume that they will read your chart and know what you need. If you ask the head nurse to share your needs with the staff, you may not have to repeat them to everyone that enters your room.

Remember: The doctors, nurses, and other staff are there to help and are for the most part happy to accommodate you.

Columnists on mySMAteam discuss SMA from a specific point of view. Columnists’ articles don’t reflect the opinions of mySMAteam staff, medical experts, partners, advertisers, or sponsors. Content on mySMAteam isn’t intended as a substitute for professional medical advice, diagnosis, or treatment.

All updates must be accompanied by text or a picture.
Lisa Velez-Batista is a member and ambassador on mySMAteam. Learn more about her here.

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