Halloween stirs up haunting memories of our SMA assignment
If I want to be spooked, I can remind myself what happened 29 years ago
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It seems we were just approaching October. Now the month is almost gone.
Growing up in Fort Worth, Texas, I loved October. Not only did the searing summer heat finally ease, but Halloween was also right up my alley. I regularly scarfed up Alfred Hitchcock movies and books (albeit with immense gratitude that our house didn’t have a basement), classic monster movies (“Frankenstein“), and psychological thrillers (“Psycho“). There was no watching TV “on demand,” so the thumping heart-in-my-throat tension escalated until a commercial annoyingly interrupted the momentum. Occasionally, I’d realize that I’d been holding my breath. I might have fainted without a commercial!
My husband, Randy, never cared for Halloween, so the bowl of candy we handed out was usually the only decor. As I was teaching kindergarten when our children were born, the shift from scary to cute was effortless.
In 1997, Halloween came exactly 10 months after our move to an old farmhouse in the North Carolina mountains. I didn’t plan anything for the holiday, yet my thumping heart remained in my throat.
The scare was real. And there were no commercials.
The scary SMA diagnosis and prognosis, and our brief assignment
Our family of four (Randy, our children, Matthew and Katie, and me) became a family of five with the addition of baby Jeffrey on May 18, 1997. Although the pregnancy was a surprise, we were absolutely delighted to welcome our beautiful little guy.
Eight weeks later, on July 14, Randy and I waited in a hospital room with Jeffrey to consult with a pediatric neurologist. We’d witnessed Jeffrey’s consistently quiet cry, lack of squirming, napping when he should have been nursing, and more. Add the neurologist’s subsequent observation of floppiness, lack of reflexes, and tongue fasciculations, and our utter delight began transforming into sheer fright.
The neurologist attributed the findings to three words: spinal muscular atrophy (SMA). Randy and I had never heard of it. As a former teacher of kindergarteners with myriad conditions, I’d witnessed children in my class and the rest of the self-contained school thriving in the face of physical challenges. The diagnosis didn’t necessarily scare me, but the prognosis did.
The neurologist explained that death occurred when the last of the muscles (for breathing) quit working, usually by age 4. The genetics counselor quietly explained later that the end actually tended to come in half that time.
Randy and I regrouped before proceeding in our quest to thwart SMA’s agenda. After a harrowing episode in late September, we decided that Jeffrey had had enough of our intervention. Just as we resigned ourselves to keeping him comfortable, though, a last-straw opportunity (a pulmonology consultation) materialized, and I jumped on it.
I should have jumped far, far away.
The real Halloween terror of 1997
Halloween’s terrifying frights that year began Oct. 6, when the consultation derailed before it started, and Jeffrey went into respiratory arrest three times within a matter of what felt like minutes. The experience left all of us — especially our tiny warrior — completely drained. Hospice was summoned, and morphine was ordered. Prayers to God were beefed up — this time, not to save Jeffrey by keeping him here, but by taking him.
Halloween, the actual one, began with observations that the morphine and suctioning routine wasn’t helping Jeffrey until after several (approved) additional doses. We stumbled through the day as I hesitated to take my eyes off him.
That night, Randy and Matthew left for a football game, and Katie watched TV. The porch lights remained off to deter any trick-or-treaters. I focused on Jeffrey’s tiny bell-shaped chest, making sure it still moved. As usual, I prayed that all of us would be at home when Jeffrey took his final breath, relieved when Randy and Matthew returned from the game.
Jeffrey’s breathing muscles quit four days later.
What would be in an SMA haunted house?
Alyssa Silva, lead of my SMA News Today columnist group, posted an intriguing prompt in the community forum:
“Welcome to this haunted house, where … every room contains something that would give someone living with SMA nightmares. … What would be waiting inside your SMA haunted house?”
Some memories from our brief SMA assignment remain suited for a haunted house. A replay loop of the SMA-confirmation tests (chest X-ray with Jeffrey’s arms strapped above his head, blood draw from his forehead, electromyogram) would spark nightmares. So would replays of Jeffrey’s fading into respiratory arrest after the terrifying pulmonology consultation-that-wasn’t. Being stuck in a room with his tiny white casket ranks pretty high as well.
On the flip side, being stuck in empty rooms would be equally haunting: a room devoid of connections to fellow SMA families, or a room in which prayer, faith, optimism, humor, and signs are prohibited. A room in which access to current SMA treatments is denied would be excruciating.
There won’t be any scary books, movies, or porch lights this Halloween. If I want to be spooked, I can remind myself what happened 29 years ago.
Believe I’ll pass.
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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