Dreaded Diagnosis

A Father Comes to Grips with His Daughter’s SMA

In January, 2005, our two-and-a-half year old daughter was diagnosed with Spinal Muscular Atrophy (SMA). About one month later, I began writing about our rocky experience with her symptoms, our doctors, and her eventual diagnosis. I had quite a difficult time completing it, and revised it several times. Ultimately, I put it away for a few months. Looking back over the original drafts, I realized how much my story was driven by anger and a “why us?” attitude. One year later, my outlook has changed, and in turn, so has my story. I’d like to share it with you.
Our precious Maya entered our lives on September 6, 2002. She was born a few days after her due date in Kurashiki City, Japan. We fell deeply and madly in love with her instantly. Her Apgar scores were high and there were no complications during her birth. Maya developed relatively well in the first six months, reaching milestones such as lifting her head and sitting up.

However, we did receive a scare one night when Maya was about 3 months old. In the midst of my wife giving her a bath, Maya suddenly stopped moving. Although her eyes were open, she remained motionless for a minute or two. As could be expected, we were quite petrified as it was happening, but once she started moving again, everything seemed fine so we did not think too much more about it. In our need to make sense of what had happened, we rationalized that Maya was probably just a little dehydrated. In hindsight, while we have heard it is extremely rare, it is conceivable that the incident we witnessed was the precise moment of onset of this cruel disease.

In the days and weeks that followed, we became slightly concerned that Maya did not seem to be kicking out her legs quite as hard as before. While we did not necessarily relate it to the bathing incident, we asked Maya’s doctor about it. He told us not to worry so much and assured us that she was developing just fine. Maya continued to develop and we went on living our perfect and happy lives.

As Maya approached her ninth month, our concerns about her development resurfaced. She still couldn’t roll over on her own, and she wasn’t making any attempt to crawl like other babies her age. Again, the doctors told us not to worry. “Just be patient and she’ll get there in due time,” they said. It was around this time that I began searching the Internet for things like, “floppy baby” and “developmental delay.” While I told myself that I was only researching methods to help Maya overcome her minor and temporary delay, I began to secretly worry that something may truly be wrong with my baby.