The Deep Dig for Impact

Every second of every day, life changes profoundly for someone on earth. A death, a crime, a lottery win, an election, a new job, a lost job, a child born or adopted, coffee spilled on the stranger who will become the life partner, a car accident that cripples, a letter, a diagnosis: the world shifts and reveals itself transformed.

Sometimes, the change is immediate; a woman gets the call about a baby being born and races off to the airport to meet her new child in a faraway hospital. On the flight, she feels the difference and labels it: that call made me a mother.

Other times, the change has to be carefully traced back to its root. The beat-up old car that college student drove made him the likely grocery-store connection for a group of giggling women, who introduced him to the woman he eventually married. Was his grandfather — the car’s original owner — the reason he met his wife? Where did that story begin?

Truth be told, this is a question of consequences. How do we know when we had a part in change? Also, how long should we wait to let go of a moment and its potential to alter the world? Is there an expiration date on an event’s power to reshape the future?

This is on my mind these days as I read the news, both the news that everyone is reading and the tiny corners of the news that pertains to very few people. In the former, I am wondering how so many people can say so many inflammatory things and see little to no legal or political consequence. If a person in power lies to Congress or to the President, I expected that consequences would abound. Stepping back further: if a candidate is caught on film making lewd comments about women’s bodies and the things he’s done to them, I would expect women to refuse to vote for him. These lists go on and on, from racism to fraud to gross conflicts of interest to treason, and yet: there they are, still on my screen, still smugly in their offices, still leading.

What on earth does this teach us? Dishonor without consequences is a poor lesson indeed. More than dishonorable, though, I find the concept frightening. We are held together by an ethical code that, naively, I expected we shared: commit a crime and suffer the consequences. It is what has held my fear at bay during this troubling time: surely, if there is criminal action, there will be ramifications. Fear of the damage that can be caused by men and women in power is one thing, but fear that such damage will go unpunished is far worse. It means that there is no real reason for power to reign itself in or bind itself by rules. It is the very definition of anarchy.

And yet…perhaps the consequences of these breaks with normality are still coming. Much as the patience I need is hard to find, I read something this week that made me wonder about a moment in my daughter’s history that may have made an impact on diagnostic guidelines for a rare disease with which she had been misdiagnosed in 2010. This is a tiny story in the bigger world of news; a fraction of people on earth will read it and be interested, and yet it gave me pause.

The disease, called eosinophilic esophagitis, is a chronic, immune-mediated disorder, manifesting itself in patches of white blood cells and, sometimes, furrows and strictures in the esophagus. Children with EOE, as it’s known, have trouble swallowing and eating, among other symptoms. When she was diagnosed in 2010, the criteria for that diagnosis was simply a quantitative one: were there a certain number of eosinophilic cells in a given measurable area of her esophagus? If the answer was yes, then the diagnosis was made and a standard treatment protocol followed.

I’ve written ad nauseam about that treatment protocol — the endoscopies, the diet — but suffice it to say that the treatment was a hardship for our family. Still, we believed the gastroenterologists and their diagnosis. In 2012, when we were confused and waiting for more ideas about how to treat her, a new study on EOE came out that added a wrinkle to the diagnostic criteria. Now, the thinking was that there was a variant of EOE called PPI-REE, or proton pump inhibitor responsive esophageal eosinophilia. Perhaps, the thinking went, a person’s symptoms and pathology would respond to higher doses of a drug class called “proton pump inhibitors.” Then, the diagnosis would be PPI-REE, not EOE. This seemed likely for our daughter, and for a little while, this new diagnostic criteria fit for her.

Then, in 2013, we were handed a shocking piece of news: our daughter’s doctors had not all read nor taken into account potential structural problems in her chest stemming from a heart condition when she was a baby. A simple test called a swallow study revealed that her esophagus was compressed by her aorta, trapping food inside that irritated the tissue. That irritation brought forth white blood cells — eosinophils — to try to mediate the damage. Within six months, another cardiothoracic surgery resolved the problem forever. Aside from ill-conceived survey calls, we never heard from the gastroenterologists again.

I always wondered how many children out there diagnosed with EOE were like my daughter — misdiagnosed, dealing with a structural problem that manifested itself in esophageal irritation. I always wondered whether the moment when her gastroenterologist put the pieces together had any impact for what would be, admittedly, a tiny subset of patients in an already tiny diagnostic group. In other words: were there consequences for her misdiagnosis? Did anyone change? Did anything change?

Last week, I read a set of new diagnostic criteria for EOE. It comes from a European study and survey of doctors, but it offers one line, emphasized below (emphasis mine) that has not appeared in previous studies:

EoE represents a chronic, local immune-mediated esophageal disease, characterized clinically by symptoms related to esophageal dysfunction and histologically by eosinophil-predominant inflammation. Other systemic and local causes of esophageal eosinophilia should be excluded. Clinical manifestations or patho- logic data should not be interpreted in isolation.

Other systemic and local causes of esophageal eosinophilia should be excluded.

Other systemic and local causes.

Other.

My child lives inside that word, other. Here, more than three years later, I see her in this study. I don’t recognize a single doctor in the study’s authors, and so it’s likely that she, personally, is not the reason for that phrase that gives me so much hope, but in the moment in 2013, waiting for there to be consequences for the pain she suffered, waiting for there to be positive change that came out of the years that misdiagnosis stole from her, seeing other systemic and local causes called out here tells me that there is sometimes a long arc to consequence.

Sometimes people make mistakes — even, in the case of our politicians, deliberately obfuscate and rant in prejudice — and nothing happens right away. Sometimes those mistakes or those deliberate wrongdoings seem to pass by unnoticed or unpunished. Other times, though, they do come out in the end. Everything is, in its way, permanent. Real cannot be made unreal. True cannot be made false, nor false true. Sometimes you have to dig deep, and long, to see the impact.

I’m holding onto this consequence, and I’ll continue to wait for more.

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One thought on “The Deep Dig for Impact

  1. […] say? MISDIAGNOSIS. NEGLIGENCE. APATHY. CORPORATE MEDICINE. FATE. MALPRACTICE. UNSOLVED MYSTERY. RARE. […]

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