Grappling with the horrible death of another family’s child

The panel on mothers' losses that made me feel thankful for our SMA assignment

Helen Baldwin avatar

by Helen Baldwin |

Share this article:

Share article via email
main graphic for column titled

A surprise pregnancy hurled my husband, Randy, and me way off guard in the fall of 1996. There were gasps aplenty when our peeps received the news, as we were both in our 40s and already weary of hawking fundraiser wrapping paper.

Our bonus baby, Jeffrey, arrived on May 18, 1997. His early appearance provided us with 14 extra days before the mother of all surprises: a diagnosis of the deadliest form of SMA. Back then, there was no hope, treatment, or cure. Jeffrey’s life was projected to be very short.

Once we got a glimmer of a grip on the situation, we sought to prove the pediatric neurologist wrong. Less than four months later, however, I was no longer sharing info about just SMA. I was also sharing about Jeffrey’s death.

Introduction to another child’s traumatic death

A number of years ago, I was part of a panel in an early childhood class at Appalachian State University, here in North Carolina. The other two panelists had likewise lost children. One’s baby, born with a rare genetic condition, remained in the hospital until his death some months later.

My mind drifted into gratitude that Jeffrey had come home the day after his birth, although Randy worried about his abdominal breathing. Still, we spent two months blissfully ignorant of the nightmare about to strike.

Recommended Reading
This illustration for the American Academy of Neurology annual meeting shows a person in a wheelchair.

AAN 2023: Spinraza shows benefits in clinical trial of SMA adults

While waiting in the hall for the third panelist’s arrival, I asked the instructor, whom I knew through Parent to Parent Family Support Network, how that mother’s child had died. She said the woman’s young son had been swept away in a drainpipe after a heavy rain as he investigated the rushing, swollen creek behind the site of his sister’s birthday party.

Horrified, I didn’t have time to process that scenario before the mother, Julie, arrived. After quick greetings, we took our places at the panel table, where I somehow ended up introducing us all to the class. I began with our family and Jeffrey before shifting to the mother with the hospitalized infant. She spoke briefly.

I was completely at ease until it was time to introduce Julie. I paused to regroup, thankful I didn’t have to explain her circumstances myself. My head and heart reeled as I imagined, as best I dared, dealing with such a sickening experience.

Bryson’s body was recovered over 400 yards away after a rough journey. Mercifully, it was recovered relatively quickly, although I imagine it felt like a lifetime to his frantic parents.

Thinking of anything remotely positive when our baby died

After Jeffrey’s diagnosis, home health sent a nurse to evaluate him. Reeling, I needed to know about the procedure for organ donation. She said the patient had to be hospitalized at the end, which I’d already determined was not the option of choice — not my choice, anyway.

A few months later, after a consultation that went horribly wrong, we landed in the emergency room and then overnight in the hospital with Jeffrey, who had three respiratory arrests within an hour. I wondered if the end was near enough that we wouldn’t make it home.

The flicker of my optimistic self rationalized that if we couldn’t leave, then we could donate Jeffrey’s organs. It provided a minuscule amount of comfort.

We did make it home, though. The end, just under a month later, was an answer to our prayers. Jeffrey was perched in his favorite spot (on a pillow in my lap) as he prepared in earnest to snag his wings. As increased morphine dosages were no match for his increased respiratory distress, I begged God to take him until I thought to give our sweet warrior himself permission to go on. His flight peacefully commenced after just two more breaths.

Different ways to absorb a child’s death, anticipated or otherwise

I preferred the forewarning that Jeffrey likely wouldn’t be with us long, even though my mind was frequently overwhelmed as I faced his early death. Admittedly, I often waved the white flag in disbelief and let the tears flow.

In contrast, Julie, who faced the loss of her child in an inconceivably brutal manner, said Bryson loved life. She was thankful her son lived his to the fullest up until the last minute.

In a bit of irony (or angel intervention), Bryson, the conscientious lover of adventure, had had a discussion with his mom on the way to the birthday party. They talked about organ donation, of all things, and he said he wanted to do it. His end came fittingly for him, including the donation of his precious heart and eyes.

Once again, I’m convinced God knew exactly what he was doing when he handed out these life-changing assignments.

Indelible memory

I obviously won’t ever forget about Jeffrey. Neither will I forget about Bryson, who was 7 when he died. Our granddaughter, Clara, is 7; our grandson, James, will be 7 in two years. Clara, a cautious and generally responsible firstborn, is content keeping her adventures reasonably tame.

Like Bryson, however, James is inquisitive, determined, and easily the proverbial bull in the china closet. I can’t bear to consider the what if.

And so I don’t.

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.


Leave a comment

Fill in the required fields to post. Your email address will not be published.