ONE IN 100,000 CHILDREN
David Sleeth-Keppler
My wife called me to tell me our three-year-old son’s diagnosis. I was sitting in a hospital waiting area after his MRI, yet she knew before I did. Our primary care physician had seen the results—a large cerebellar tumor—in my son’s chart and called her at home.
“He has brain cancer,” she said through tears.
Time slowed. My vision blurred. The tinnitus in my ears sharpened. We had no way to comfort each other across the phone line. Always the pragmatist, I said something about “finding out more” during my upcoming meeting with the oncologist.
I had already suspected something was terribly wrong. The nurse who had been joking with us before the MRI wheeled my son into recovery with a sudden solemnity. His tone shifted. No one explained why.
Despite everything, I was oddly relieved my wife delivered the news instead of a specialist. I entered the oncologist’s office already braced for the news. He explained that our son’s tumor pushed rather than invaded brain tissue and was likely a juvenile pilocytic astrocytoma. I was stunned when he said surgery would not be immediate. An unspeakable month of waiting followed.
That month became our first lesson in probability. Doctors spoke carefully, reassuringly, in the language of likelihoods and favorable statistics. They told us what usually happens. What children like ours tend to experience. It was clear they meant to steady us. What none of them could know yet was that our son would not follow the usual path—once, but repeatedly.
Long before the tumor was discovered, our son had begun to walk differently. He fell often. His gait seemed off. We raised concerns with our pediatrician, who reassured us that he was likely cognitively advanced and experiencing normal asynchronous development. Toddlers develop unevenly, we were told. We left uneasy but deferential.
When we finally reached a pediatric orthopedic specialist, the tone reversed violently. He suggested our son likely had Duchenne muscular dystrophy or Friedreich’s ataxia—both genetic disorders with reduced life expectancy. He advised us not to have more children. My wife was already pregnant.
Neither doctor was malicious. Both were relying on experience, training and probability. Yet one minimized legitimate concern, and the other delivered catastrophic possibilities without confirmation. In neither room did we feel that our son—as a singular child—was being seen.
The tumor was eventually found. Surgery was scheduled. The neurosurgeon was warm, confident, generous with time. He drew pictures for us to take home. “We will cure this,” he said. “He’ll recover. It will be a long road, but he’ll walk out of here.”
We clung to that image.
After surgery, our son did not walk. He did not speak. He could not hold his head upright. His face drooped. He stopped crying altogether. We learned from a newly graduated physician—not from the surgical team—that he had developed Posterior Fossa Syndrome, a relatively uncommon but devastating postoperative complication.
The predictions we had been given no longer applied. We had been prepared for one journey and found ourselves on another, without a map. Optimism, offered with care, became disorienting in retrospect. What might have helped was not less hope, but more truth: an acknowledgment that medicine operates in probabilities, not certainties, and that some children fall outside even well-established expectations.
A week into our stay at a teaching hospital’s pediatric rehabilitation unit, my wife noticed bright blue veins branching across our son’s chest—veins that had not been there the day before. When the attending physician made rounds, she pointed them out.
He glanced briefly. “It’s nothing to worry about. It’s not crossing the midline.”
We exchanged a look. The explanation felt insufficient, but the language was authoritative. The doctor moved on.
Over the next day, my wife raised the concern again—twice. Each time it was dismissed. Late one evening, a resident who had been working for over thirty hours paused when he spoke. He ordered a sonogram.
It revealed a fully blocked vein and a partial thrombosis. Our son’s PICC line had to be removed immediately.
The following morning, the attending physician arrived angry. “What happened here last night?” he demanded, as though we had violated an unspoken hierarchy by persisting.
Later, while staff attempted repeatedly—and painfully—to regain IV access, a fourth-year medical student explained that they rarely saw PICC line thrombosis in children his age. She cited the literature.
“In my son’s case,” I said, “the chance of it happening is one hundred percent.”
The literature that guided antibiotic duration had not predicted his thrombosis. It had not predicted his tumor either—an occurrence in one in one hundred thousand children. At that moment, statistics offered no comfort. Our son’s immediate suffering mattered more than protocol completion.
We left that hospital carrying not only our injured child but a fracture in trust. Authority had collided with parental observation, and in that collision, our son’s experience had nearly been overlooked.
Years later, after we had settled into a fragile new normal, our son developed life-threatening seizures—another rare complication, emerging long after treatment had supposedly concluded. Once again, we found ourselves outside the curve, explaining history that did not fit neatly into charts or expectations.
By then, we understood the pattern. Each event in isolation was improbable. Together, they formed a life lived persistently at the margins of prediction.
Medicine excels at problem-solving. It is less practiced at accompaniment. What we needed most, again and again, was not certainty but acknowledgment: that our child’s course was unfolding differently, and that this difference mattered.
One nurse understood this instinctively. When our son could not speak weeks after surgery, she did not reassure us with timelines or probabilities. She simply said, “What you are going through is very difficult,” and stayed.
I think often about how differently our experience might have felt if more clinicians had paused to ask, “What else might it be?” or “Tell me what you’re seeing.” Parental observations are not interruptions to care; they are data. Rare outcomes are not failures of medicine, but reminders of its limits.
Nobody wants to be the one who falls outside the literature. But someone always is. When that happens, how care is delivered—how uncertainty is held, how listening occurs—can matter as much as any intervention. For families like ours, navigating the cumulative weight of rare outcomes, being seen and believed would have made all the difference.
David Sleeth-Keppler is an associate professor of marketing and management at Cal Poly Humboldt’s School of Business, where he has taught since 2011. Sleeth-Keppler holds a PhD in social psychology from the University of Maryland, and completed postdoctoral work in marketing at Stanford University's Graduate School of Business. His research focuses on judgment and decision-making, particularly how people navigate uncertainty and make sense of complex information. His academic publications have appeared in Royal Society Open Science, The Journal of Social Psychology, and Environmental Communication. He is a father to five children and has been married for 25 years. Sleeth-Keppler and his family live in rural Northern California.