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.

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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The SpinalMuscularAtrophy.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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