31 Days of SMA: The Power of a Positive Physician-Family Dynamic

Photo courtesy of Carolyn Saylor

Day 10 of 31

This is Carolyn Saylor’s story:

We live in a rural area in central Wisconsin, and when our daughter was diagnosed with SMA type 2 in 1991, the local specialists felt we’d be “lucky” if Britt lived to the age of 7. To be fair, that was the average life expectancy for this form of the disease at the time.

We weren’t given much information about SMA, so we were happy to find a new organization called Families of SMA. Thanks to the network we gained through the group, when Britt was 4, we went to Chicago Children’s Hospital for an evaluation, but to our dismay, we heard: “If only we would’ve seen her earlier, we could’ve had her standing and maybe taking some steps.”

I truly felt that by living in a rural area, we weren’t given enough information or therapy options to make informed decisions about our daughter’s care, but it inspired us to become proactive.

We repeatedly heard respiratory issues would be the reason we lost Britt, so we requested a pulmonary referral to Dr. Mary Schroth. I told her about the “If only…” comment and that we wanted to be proactive. Dr. Schroth thought we’d have time to develop a relationship so when the hard decisions had to be made, we could do it together.

Within the next few years, our family attended some of the early Families of SMA conferences where we learned about the In-Exsufflator and potential benefits for SMA patients. Britt was the first patient of Dr. Schroth’s to use the cough assist, and it was a game-changer that helped Britt make it past the age of 7!

Dr. Schroth was with us every step of the way during our SMA journey and — after Britt transitioned to the adult side of the hospital — she acted as a consultant helping others understand SMA and how powerful a positive relationship between physician, patient, and family can be.

Britt lost her battle with SMA in 2018 at the age of 29, but it was from cardiac arrhythmia (irregular heartbeat) due to hyperkalemia (high blood potassium levels), and was not respiratory-related. The grief and void in our lives is immense, but we take comfort knowing we did everything we could, and are grateful that Britt’s life made a difference to other SMA families. We honor her memory by continuing to make positive differences in the world.

SMA News Today’s 31 Days of SMA campaign will publish one story per day for SMA Awareness Month in August. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofSMA, or read the full series.