Hip replacement recovery prompts memories of my late son’s diagnosis

My husband, Randy, and I sat across from the pediatric neurologist, eagerly anticipating his opinion of what was affecting our 8-week-old baby, Jeffrey. I say eagerly because I’m an optimist, and I’d taught kindergarteners at a self-contained school for children with multiple disabling conditions. I felt confident that we’d figure out how to infuse accessibility into our old farmhouse, presuming that the worst-case scenario was simply creative planning.

It wasn’t.

The neurologist drew us toward the proverbial black hole with the probable diagnosis: a severe case of the most severe form of spinal muscular atrophy (SMA). He shoved us over the edge with the prognosis of death before kindergarten.

Numb, I somehow had enough sense to ask a few questions, one of which concerned our other children, Matthew, who was 10 at the time, and Katie, then 7. Both apparently healthy, they obviously didn’t have what Jeffrey had, but might they have a milder form? “Not likely,” said the doctor.

Scouring SMA message boards, I learned much about this insidious disease before our assignment ended less than four months later. I eventually stopped worrying whether Matthew or Katie might have a milder version of SMA.

Recommended Reading

January 3, 2024 News by Lindsey Shapiro, PhD

Top 10 SMA stories of 2023

Why am I falling?

I began falling around 2009 or 2010. It wasn’t the careless, trip-over-something kind of falling, it was just — falling. My leg would just buckle. And as it always happened suddenly and without warning, I could neither anticipate nor avoid it.

Although it seems utterly ludicrous now, I considered the remote possibility that I might have adult-onset SMA (type 4). Randy and I presumed we were both carriers of SMA for Jeffrey to have had it, although I’d read about rare exceptions. What if I were more than a carrier?

The falls increased in frequency, but I ditched the SMA theory. I tended to collapse more often to the right and speculated that maybe my right hip was out of place. Chiropractic adjustments of varying types by different providers did nothing to squelch the unnerving, unpredictable collapses, until one chiropractor suggested an X-ray. The culprit was obvious: I needed a new hip.

On March 5, 2015, my right hip was replaced. The procedure and recovery were both uneventful, save for the unbelievable fact that I had no pain. A couple months later, Randy and I learned we were going to become grandparents. By the time Clara was born, my new hip and I were ready!

The surgeon’s warning that I’d probably need my left hip replaced in two to three years was of no concern at the time.

Here we go again

I became wary of my left hip’s stability about five years ago. My obligations back then didn’t allow time for recovery from a hip replacement, so I initiated chiropractic adjustments and utilized the cane when my hip acted particularly cranky. Thankfully, it behaved sufficiently until my mother’s death ended her need for my help and both grandchildren were in school.

It looked like I might be able to squeeze in the surgery during the winter months, when the weather slows down our chaos, so it was scheduled for earlier this month, on Jan. 3. A surprise abscessed tooth extraction forced a delay until Jan. 11, but all went fine (so fine, in fact, that I didn’t know the surgery had been done until the anesthesia wore off).

This time, the surgery was outpatient. Randy and I headed back up the mountain a few hours after the procedure. By late afternoon, I was home, ready to tackle the post-op routine of medications, supplements, ice packs, a compression device, exercises, and more.

I wrote the schedule down but relied on my phone’s alarms to get it all done. I flashed back to the mind-boggling morphine schedule I had written out for Jeffrey as his time wound down. With meticulous focus on the times and dosages, I’d realized with horror that I hadn’t accounted for a time change. The entire chart, so carefully prepared, was useless.

Spasms and a few memories

The spasms hit unexpectedly the first night after surgery. As if in an exorcism, the formidable jolts drew my left leg inches off the ground, the spasms consuming my entire leg, down into my foot. I somehow missed that these monsters were part of the recovery, as I’d been pumped full of numbing shots with my previous hip replacement. It didn’t matter if I was walking (with a walker) or lying down, I couldn’t stop the spasms or reduce their excruciating severity.

As the relentless agony continued, I flashed back to the electromyography (EMG), the third and final harrowing test to confirm Jeffrey’s SMA diagnosis. He — rather, we — wailed during the chest X-ray and the SMA blood draw in his forehead, but the EMG was beyond grueling.

Thinking that our sweet baby may have felt anything remotely close to my explosive post-op spasms during his EMG makes my heart break and my eyes well up.

And once again, I’m thankful he’s free.

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.