I learned this lesson when our third baby was born with SMA
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My mother told me I had fallen while climbing out of my baby bed as a toddler, ending up with a scar that resembled a tiny wad of chewing gum on my elbow. I don’t remember which elbow it was, nor can I tell, as I now boast an impressive collection of “scar-y” memories.
Evidence of my klutziness and tanglings with poisonous plants, insects, and more isn’t limited to my arms. I’ve broken out all over in clusters of oozing blisters from poison ivy and gigantic blisters from spider bites and who knows what else. Tumbles to the ground — sometimes with objects in my path — have left me with frequent scrapes and increasingly creaky.
A recent encounter with an agitated bee was a lulu. Plenty of previous stings resulted in significant swelling, but a sting on my forehead a few years ago landed me in the emergency room with epinephrine. Not wanting a repeat of that, I ice-packed the recent sting, just under my right eyebrow. But the swelling gradually consumed the right side of my face before it eased.
By the next morning, the swelling had subsided enough that there was evidence of an eye! Within a few days, I breathed a sigh of relief that I’d managed without epinephrine intervention.
Alas, two weeks later, the right side of my face mysteriously puffed up again for a day. Seven days later, the same thing happened again, with the swelling now moving across my upper lip and into the left side of my face. Attributing the perplexing swelling somehow to the bee sting, I decided it was time for intervention.
As we entered the packed ER waiting room, my husband, Randy, commented that my comically enlarged lips reminded him of “The Simpsons.” I couldn’t argue. After a lengthy wait, a steroid injection and a prescription for prednisone jumpstarted the healing.
Greatly improved the next day, I showed James, our 8-year-old grandson, a “before treatment” shot so he could see how far I’d already come. I expected a look of horror or an uncontrollable burst of guffaws. But after perusing the picture, James simply shrugged and proclaimed, “You look like MomMom.”
Not knowing whether to laugh or cry, I silently gave thanks that James’ only acknowledgement was that it was a picture of me. His only concern was that I was still “MomMom.”
Well over 50 rare diseases are currently represented here in the Bionews community. (Bionews is the parent company of this website.) Although that’s a relative drop in the bucket, given the number of actual diseases and conditions in the world, it’s still a remarkable representation of the substantial, diverse challenges that many people face.
Invisible diseases are exactly as the name implies: conditions that aren’t visible to outsiders. Examples include lupus, Ehlers-Danlos syndrome, and fibromyalgia. Spinal muscular atrophy (SMA) was an unknown disease to Randy and me, and it was invisible to us until it wasn’t.
Our third baby, Jeffrey, was beautiful, with satisfactory Apgar scores. He was breathing abdominally, but no one in medical garb seemed concerned. Upon our arrival home, he was an extraordinarily easy baby.
Two months later, Randy asked my physician brother, Paul, to examine Jeffrey’s abdominal breathing, which was still significant. The look on Paul’s face said plenty, and none of it was good. He somberly revealed that he had found a dull-sounding lung and no reflexes, which warranted a consultation with a pediatric neurologist.
The rest of the afternoon, I rocked Jeffrey in a stupor. I silently pondered my earlier teaching assignment of kindergarteners with orthopedic and other disabilities. Suddenly, I understood the purpose of my being assigned to that school. Whatever we would face with Jeffrey, I thought to myself, we’d be fine.
The neurologist’s initial assessment of “a severe case of the deadliest form of SMA” meant that the muscles responsible for sucking, swallowing, moving, and breathing would peter out before Jeffrey turned 2.
At the time, there was no treatment or cure. Consequently, medical experts offered no hope, either.
In his first couple of months, Jeffrey looked like a healthy baby. SMA wasted no time, though, and it was soon obvious that something was amiss. If his head wasn’t fully supported in the stroller or the car seat, it flopped to the side, and he couldn’t straighten it.
Long before I was ready, our sweet baby lost his ability to smile, not that there was much to smile about. Frequent suctioning, which I’d done at my former school, soon became an essential order of business.
Within three and a half months after the diagnosis, blinking was Jeffrey’s only movement, but it’s all he needed. He eventually communicated through his eyes his readiness to move on. He bid us farewell on Nov. 4, 1997.
No longer fearing a respiratory crisis, I bathed Jeffrey. His long, gaunt physique bore an uncanny resemblance to an exquisite china doll, not the chubby baby we once cuddled.
Depression could have consumed me had he not looked just like the angel he was.
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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This site 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.
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