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The Line Between Diagnosis and Denial

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Taking my fraternal twin boys to a doctor is about as reassuring as standing in line for the TSA checkpoint.

Both modern medicine and air travel are costly privileges that involve long waits, bodily discomfort and psychological angst. Masses of people are subjected to excess scans in order to catch the few real risks. Even as I know I'm lucky to have care -- that early intervention for potential problems is critical -- still, dread and resignation course through me with every appointment.

I felt this weight and wariness most acutely last summer, when one of my sons wasn't yet walking at 20 months of age. Eighteen months is considered the outer edge of "on-time" for that milestone, and so our pediatrician sent us for further evaluation, first to an osteopath, who then referred us elsewhere. We finally found ourselves at the nearby children's hospital, on one corner of a gym mat cordoned off by a thin curtain. Though usually giggly and playful, my dimpled toddler son cowered in my lap, while my husband Ken kneeled nearby. The physical therapist sat cross-legged with a clipboard, observing the non-action of our stressed-out trio.

"Usually they're much more independent at this age," she said. In my peripheral vision, a nurse pushed a wheelchair-bound, tube-laden child, who happened to be screaming.

"He knee-walks all the time," I told the physical therapist of my son, as if bargaining, offering a cell phone video as evidence. "I think he's scared in this environment."

I was certainly scared, though I did my best to feign strength (this is a large part of motherhood in general, I was coming to see). My intuition told me my son was fine. He'd had a series of casts in his first year to correct a mild curvature of his foot, which I privately thought caused his late walking, or at least contributed. Nevertheless, our doctor launched us on this odyssey of waiting rooms, serial referrals and eye-popping bills, and I felt compelled to comply. As I've written elsewhere, I wouldn't have children at all without devoted doctors, and without the grace of modern medicine -- but even my keen appreciation for these things doesn't always temper the primal sense of fear in medical settings. I hoped this evaluation for my son would culminate in a recommendation for orthotic shoes.

"I'm going to refer you to neurology," the physical therapist said, scribbling on her sheet. "You might want to get an MRI to rule out tethered spinal cord syndrome."

My calm-parent mask melted, tears overflowed. It didn't make sense that he had a hidden problem with his spine, when he had a visible problem with his foot. At the same time, how could I argue against ruling it out, because where do you draw the line between diagnosis and denial? What if you do nothing, and thereby miss the window for early intervention? No matter how much I believed my intuition, I couldn't see myself explaining that to a much older child, to my son in some difficult future, that I'd somehow missed the chance to help him.

She handed me a box of tissues, which she must have kept on hand, a material form of empathy. "It's fixable with surgery." She tried to reassure me. "Not even the whole spinal cord, just the bottom."

I stifled a sob, which came out as a gurgle.

Meanwhile, he knee-dashed over to the tissue box and yanked out a few. Then he hoisted himself to standing to rifle through his medical file. Progress! I perked up watching him on two feet. But it seemed we'd already turned a diagnostic corner. The belated display of toddler independence went unremarked.

My husband, a physicist, switched into scientist-mode, seeking more data. "What about this case makes you think tethered cord?"

"I've recently had two cases, so it's been on my mind."

What did these other kids' diagnoses have to do with my child? This seemed the ultimate in questionable grounds for testing. In fact, this is called "recency bias," according to Dr. Daniella Zipkin of Duke University, an expert in the growing field of evidence-based medicine. I spoke to her last month to ask what factors drove diagnostic procedures in pediatrics. Are our kids being over-tested?

First, she explained pre-test and post-test probabilities, and the fact that even reasonably good tests might not yield a definitive diagnosis when the condition is rare, but instead lead to more testing. She also acknowledged that, in general, our country goes for "low value" testing -- expensive procedures that may not end up giving the most useful results. She directed me to the site choosingwisely.org, a growing resource for patients and doctors to evaluate whether care is truly necessary and supported by evidence.

As I perused the site and the standard practices it challenged, I saw the flip side of my own reluctance to subject my son to the ordeal of testing. For example, the site advises against CT scans for minor head injuries, but who decides what's "minor"? I could imagine parents demanding CT scans for concrete assurance. Dr. Zipkin agreed. "Some parents might see all that testing as excellent care." I understood her point, and could suddenly envision an alternate scenario in which I needed to lobby for more intervention, the mirror image nightmare.

I don't disagree with the approach of due diligence, though it can cause tremendous anxiety, expense and risk -- for example, a pediatric MRI, which would diagnose tethered spinal cord, requires full sedation. At what point would I subject my child to one set of risks in order to rule out others? How would I draw the line between diagnosis and denial? It made my head spin.

I can't answer these questions definitively, but I do know that disconnecting from my intuition, from what I sense most deeply about my own children, leaves me feeling ragged. Perhaps this is why my adrenaline spikes while interacting with doctors, even the ones I like and trust: I realize that my strongest instincts as a mother might be called into question. Sometimes that's manageable, like my discomfort as my twin boys get their shots. Other times it's too much, as in parsing which parts of my son's spine matter most.

After the hospital evaluation, drained, stressed and worried, we headed home. My other son, home with a babysitter, had refused to nap without his brother. We all headed outside to unwind. On the back deck, while Ken and I tried to decompress, my late-walking son pulled himself upright and took his first wobbly steps. Like me, he was definitely hoping not to go back to that hospital.

Six months later, he now sprints across the room to sit on his twin, and jumps in his crib for the sheer joy of flight.

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