Nothing prepared us for the SMA diagnosis of our surprise baby
At first, we simply tried to stay upright as we processed the prognosis
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My husband, Randy, and I had never considered leaving our hometown of Fort Worth, Texas. That all changed when Randy received an unexpected coaching offer in South Carolina. With little time to prepare for such a major life change, we soon found ourselves relocating to Columbia.
In Columbia, my teaching assignment was kindergarten at the then-Brockman School, a self-contained environment for students with various diagnoses and disabilities. By the end of my fifth year, I had grown comfortable navigating my students’ diverse and complex challenges.
Brockman was a dream school in many ways. In addition to providing vital ancillary services — physical, occupational, and speech therapy — the unique environment allowed me to work with students on walking (though rarely) or on maneuvering their motorized wheelchairs. When possible, I guided them around the school for different learning opportunities.
Because more students were being included in regular school settings, I found myself without a class roster for my sixth year. Just two days before students were to arrive, our school nurse, Mary, informed me that I did, in fact, have a class. When she asked me to sit down, I knew a significant change was coming. She explained that my teaching duties would now primarily involve skilled nursing.
I panicked as I wondered how I could possibly prepare for such a drastic shift in assignment with so little time. Fortunately, with the help of an extraordinary teaching assistant and a strong support system, I made it through a year caring for students with seizures, blindness, deafness, diabetes, tracheostomies, feeding tubes, and much more.
That turned out to be my final year of teaching, though at the time, I didn’t realize my journey wasn’t truly over.
A newborn and a shocking diagnosis
A few years later, in the late 1990s, Randy and I moved to the mountains of North Carolina with our children, Matthew and Katie. We quickly adjusted to wild turkeys in the yard and raccoons on the porch, but the biggest surprise came with the arrival of our baby, Jeffrey.
I was a bit out of practice with newborn parenting, but Jeffrey was a breeze. His cries for milk or a diaper change barely rose above a whimper. Although I noticed he often fell asleep quickly while nursing, he always seemed content.
Randy noticed more. After nearly two months, he asked my brother Paul, a doctor, to examine Jeffrey’s persistent abdominal breathing, present since birth but not concerning to the delivery team. Paul’s somber expression after finding no reflexes and a dull-sounding lung set off alarms. My heart pounded.
The next evening, Randy and I met with a neurologist. Within a minute of examining Jeffrey, he gave us a probable diagnosis: spinal muscular atrophy (SMA). Jeffrey likely wouldn’t live to see his fourth birthday.
There’s no way to prepare for news like that. Yet, despite the devastation, memories of my final year at Brockman gave me a glimmer of confidence that I could handle whatever Jeffrey needed. Still, I couldn’t stop thinking about the possibility of losing our baby.
Preparation for Helene and Fern
In mid-September 2024, the news focused on a powerhouse storm named Helene, which had reached hurricane status. Western North Carolina, including our area, was singled out as particularly at risk of heavy, relentless rain and wind. Residents did what they could to prepare, but few could fathom the devastation a hurricane in the North Carolina mountains would cause.
The reality was far worse than expected. Lives, livelihoods, homes, and even entire communities were swept away or pummeled mercilessly. Sixteen months later, there has been admirable progress in rebuilding, but neither the landscape nor the people are the same.
As I write this, we are in the path of Fern, a massive winter storm battering more than half the country. Our area is expected to see mostly sleet, freezing rain, and winds strong enough to topple trees, with wind chills far below zero. As with Helene, widespread power outages are expected.
With both Helene and now Fern, advance warnings allowed us to prepare as best we could. We cleaned up after Helene and will do the same after Fern, if needed.
We had no opportunity to prepare for the SMA diagnosis. At first, we simply tried to stay upright as we processed a prognosis that left us reeling. Before we could blink too many times, though, SMA warranted constant preparation. Initially, it was to explore possible options to counter its insidious nature. In a matter of weeks and certainly long before we were ready, we found ourselves preparing a resting place for Jeffrey atop our little mountain, adjusting morphine dosages to keep him comfortable, and planning a funeral with a tiny white casket.
Despite Helene’s indescribable destruction and Fern’s potential to join Helene in the history books, nothing compares to that.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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