Becoming A Mother With Spinal Muscular Atrophy (SMA)

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In The News

When Beth found out she was pregnant with her daughter in 2012, like most moms-to-be, she was eager to reach out to others for pregnancy advice. But this wasn’t so easy in Beth’s case.

Entering new territory as a parent with a disability

 

mom with SMA in a power wheelchair on the beach with her toddler daughter

Beth has spinal muscular atrophy (SMA), and finding other parents with the same condition was difficult. During her pregnancy, she was able to find only one magazine article about a woman with SMA who had a child. So Beth and her husband found themselves navigating uncharted waters in terms of knowing what to expect with her unique pregnancy.

Beth has a short torso due to scoliosis surgery when she was 11 years old, so her doctors were concerned that she may develop breathing problems particularly during the later stages of her pregnancy.

Despite planning for complications, Beth had a relatively trouble-free pregnancy, and at 33 weeks, she delivered her daughter Edith by Cesarian section.

Facing the reality of misconceptions

Mom with SMA in a power wheelchair holding her toddler

However, during her pregnancy, and even afterward as a thriving parent, Beth has encountered plenty of criticism from those who questioned her decision to carry a child and become a parent.

“It’s mind-blowing enough for some that I have a job and I drive, let alone that I got married and have a baby.”

Beth chose not to have her unborn child screened for disabilities during her pregnancy. Though screening for SMA isn’t possible, even if it had been, Beth says she wouldn’t have had the screening. Despite criticisms and judgment from the outside, Beth is comfortable in her life and her accomplishments – and that includes living life with a disability. This outlook played a big role in her decision not to have her baby screened.

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