SMA Mama – Preconception, Pregnancy, and Postpartum

I have spinal muscular atrophy (SMA) type 3. I’m unable to stand, walk, or transfer.

I use a manual wheelchair and power wheelchair and require assistance from others to assist with daily tasks such as showering, dressing, and going to the restroom. Deciding to have a child was a big decision!

Why I chose to do genetic testing

Spinal muscular atrophy is a genetic disease. Before conceiving, my husband and I decided to go through the very personal decision and costly genetic testing process.

This is not a requirement and not something that every family decides to do. As a science major interested in genetics and a planner for all things in life, this felt like a requirement for me.

My experience with pregnancy

Pregnancy is different for everyone. I was exhausted during my pregnancy. Weight gain made me unable to transfer myself near the end of my pregnancy.

Even though I was disabled, I had an overall healthy pregnancy with no complications.

I wish I would have taken that uneventful time during my pregnancy to advocate for myself and educate the medical team around me about what things could help me after my pregnancy. I believe it would have made an enormous difference in my postpartum experience.

I was put under general anesthesia for a Cesarean Section (C-section) at 38 weeks. It was determined that my muscles would not be strong enough for a vaginal birth.

I would not be able to have an epidural during the C-section because of my spinal fusion. It was also advised that I be on blood thinners after the C-section for twelve weeks because I am non-ambulatory and at a higher risk for blood clots.

Postpartum frustrations

The labor and delivery area of the hospital where I went after my daughter was born was not set up to accommodate me as a disabled mother. The bathroom was not accessible.

The nurses and staff weren’t trained to assist someone with a disability. This led to difficult transfers.

The lactation consultants were not versed on how to help someone with overall muscle weakness breastfeed. The whole experience caused a lot of frustration for me and my family.

I left after two days because I thought I would be better able to function in my own home.

Recovery for me once I was home was long and adapting to having a child was overwhelming at times. I was so focused on my child that I forgot that I also had some big needs.

With so much rest needed for recovery and not having the correct rehab or physical therapy in place for myself, I lost the ability to transfer to the toilet or into the shower.

The newborn phase as a disabled parent

The newborn phase of being a disabled parent was physically demanding. I needed a complex network of help from others around me in order to care for my daughter.

I wasn’t able to lift her, burp her, bathe her or change her. I found everyday baby items helpful to hold her and move about with her.

Specific items I used were a Boppy that allowed me to hold her in a lying position on my lap and a Baby K’tan for wearing her about the house and to hold her in an upright position.

Caring for a toddler

When my daughter learned to crawl up on things and how to walk I was able to help care for her much more. I taught her to crawl onto the couch and then onto my lap.

She learned to stand on my foot pedals and I could drive her wherever I was going. As she started eating solid foods we bought a high chair that had wheels on it so I was able to move her about the house in it if I needed to.

Eventually, with her help, I was able to dress her and change her using Pampers Cruisers 360 Degree Fit diapers. I loved her being a newborn but this new toddler stage was so good because we could both help one another!

The decision to become a parent

I will always be grateful I followed my heart and decided to become a parent. I believe more resources and support are needed for mothers wanting to make that choice.

Disabled parents deserve the same opportunities as able-bodied parents. Physical ability alone does not determine your worth as a parent.

Even though I have physical limitations, my love for my daughter is limitless.

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