I Am Not a Fool, and Other Thoughts

hosesAfter ten endoscopies, a year of restricted diets, nearly six years of medication to block acid production in her stomach, diagnosis with an inflammatory disorder called eosinophilic esophagitis, and dozens of trips to gastroenterologists, my eight-year-old daughter slid under an x-ray machine, drank some barium, and lit up the screen with a reveal of her esophagus, kinked into utterly unnatural shapes. After the radiologist told me in a hushed voice that the indentations in her esophagus were coming from her aorta, snaking its way across the back of her body, I began to put all the pieces together on my own.

The esophagus is like a rubber hose stretched between two funnels —  mouth on one end and stomach on the other. For Sammi, on one side of that hose —  about a third of the way from the top — a firmer hose was pressing into it from the side, trying to make its way across. That was her aorta, arching down the right side of her body instead of the left, where most people’s aortic arch lives, because of a surgery she’d had to correct a double aortic arch as a baby. It partially succeeded in crossing, but when it met with too much resistance, it snaked down further and tried again, forcing Sammi’s esophagus to follow its path until that esophagus was shaped not like a long straight rubber tube but like a lightning bolt.

If you force anything down a kinked rubber hose, it does not flow smoothly. Keep pouring liquid quickly into a kinked rubber hose and, naturally, that liquid will fill the available space faster than the hose can drain. It might even shoot back up the top.

When Sammi told us “the food is coming back in my mouth,” that was because it was. Thin liquids like broth and water could pass through those kinks fairly well, but thicker substances — yogurt, ice cream, milk — came to that first stopping point and then bubbled down slowly. If we nagged her to “take another bite,” or “just drink it already,” the thicker, more viscous liquids had to work their way down past those kinks while even more came down on top of them. Solid foods literally filled the length of her esophagus above the kink until no more would fit.

Unlike a rubber hose, however, the esophagus is lined with muscles that perform a process called peristalsis. Peristalsis is the coordinated muscle movement that aids gravity in moving food down toward the stomach. Because of the kinks in her esophagus, peristalsis in Sammi’s esophagus was likely to be highly uncoordinated — sometimes moving food and liquid down, and sometimes up. Sometimes, her gastroenterologist told me on the phone, that meant that food literally sat in her esophagus for long periods of time as it did a two-steps-forward-one-step-back dance toward her stomach. That is called esophageal dysmotility.

Sometimes, when there is dysmotility, food and acid can spend a lot more time in the esophagus instead of passing right through,” he told me. That, he explained, can certainly irritate the esophagus, which would cause the growth of eosinophils.

We had been told that eosinophils only grew when a child had eosinophilic esophagitis, I reminded him. Yes or no diagnosis. You have it or you don’t.

He hesitated, and then explained that the constant rubbing of food and, potentially, stomach acid inside the esophagus could cause the kind of irritation that would bring eosinophils into the picture.

“In any case,” he said, “I think it would be beneficial to have Sammi go to speech therapy to learn diaphragmatic breathing.”

He went on to explain that Sammi might have something called rumination syndrome, wherein she subconsciously forced herself to regurgitate her food. He thought it might be a response to stress — our constant badgering of her to eat, her anxiety around swallowing, and years of general food aversion. Diaphragmatic breathing, he suggested over the phone as I sat on a friend’s couch, might help her learn to relax at meal times and keep her from regurgitating her food back up into her mouth.

I took a deep breath before I answered. I’d spent the days between the barium swallow study and this phone call learning about the esophagus — about dysmotility, about the interaction between a right aortic arch and the esophagus, about children who’d needed second and third cardiothoracic surgeries after their double aortic arch had been repaired — and had thought I understood the problem well. Nervously, I stood up and gripped the nearby banister with my free hand.

“Doctor, am I understanding correctly that Sammi’s aorta is pressing her esophagus into several right turns?” I asked.

He said yes, it looked like it was.

“So, that’s a structural problem, right?”

He agreed.

“So, do you think that learning diaphragmatic breathing is likely to solve that structural problem? Will it move her aorta out of the way?”

“Well,” he admitted, “no. No, it won’t.”

So I told him that I didn’t think I would take Sammi to a speech therapist to learn diaphragmatic breathing. I told him that, since Sammi had just been through ten endoscopies she probably hadn’t ever needed, I wasn’t going to put her through breathing training she also didn’t need.

It was the most unflinchingly bold statement I had ever made to a doctor in my entire life, and it was the last conversation I ever had with him. Immediately following that, I asked if he would call the cardiothoracic surgeon or if I should do it myself. He agreed to contact him, and he never called or spoke to me again. In the coming months, there would be a change in Sammi’s medical care as sharp as the kinks in her esophagus.

cuffandpencilsIn that conversation, I came to recognize fully that doctors are just as fallible as the rest of us. Perhaps malpractice laws have forced them to keep their apologies to themselves. Perhaps the unbelievable cost of practicing medicine — from education to maintaining a modern practice — has tied their hands behind their backs and forced them to follow only the strictest protocols. Perhaps a patient as idiopathic and confusing as Sammi is so much of a deviation from the norm that their professional curiosity never gets a chance to flex. No matter the reason, after that conversation, I didn’t hear from that doctor — or any other in his practice — ever again. I questioned his judgment, and my daughter was dumped from his care.

How differently it would have felt for him to say, “I’m sorry. That does seem like a waste of time. I just want to do something to help her, and that’s all I could think of. Let’s call the experts on this stuff, and in the meantime, please keep me posted on what’s happening. Let me know if I can help at all. Let’s talk in two weeks.”

Instead, I took on the mantle alone with my husband. We became the only advocates for our daughter’s health as we navigated the next steps. Though I am not a doctor, I had put the pieces together in a way that her gastroenterologist either could not or would not.

Perhaps that’s the best lesson I have to share with the world on all of this: I’m not a doctor, but I’m not a fool either. Neither are any of you.

If you are reading this and nodding, thinking of the stories you have like this, please consider doing one of these things:

  1. Subscribe to this blog and share it with friends. Sammi persevered and healed; see how this story ends.
  2. Tell me your story. I am collecting these stories for a book I’m working on about the interactions between pediatric doctors and the parents of sick children. You can let me know if your story should be anonymous or attributed to you, and whether or not I can share it in the book or on this blog.
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18 thoughts on “I Am Not a Fool, and Other Thoughts

  1. I think it’s so important for all parents to realize that doctors don’t have all the answers. We often have to step in and take over. We know our children best and we are their best and most important advocates.

  2. I’ve had to take over decisions regarding specialist for my son! But I had a 20-year early childhood background to back me up and give me confidence. Still, it took the wind right out of me at times!

  3. […] who allowed my daughter to spend three years getting endoscopies she wouldn’t have needed if they had only read her chart, I’ve seen that the only real advocates my children have is their […]

  4. […] imagine — even hope — is the struggle and shame in the heart of her gastroenterologists once they realized what they’d missed. It is when Dr. Goldman talks about what to do about these mistakes and how to move forward from […]

  5. […] sighed. I looked inward. Somehow, I must have looked forward, to doctors’ offices and pediatricians who wouldn’t listen and another pregnancy that would lead to a baby who would need all my […]

  6. […] see the mothers’ hearts that, despite the mysoginy that erased our names and the egos that ignored our truths,  persisted. When we were scared, we persisted. When we were worried, we persisted. When we were […]

  7. […] really writing about how no one is a statistic. I’m writing about how no one is a “problem,” a “failure,” or a “diagnosis.” No one is the sole, lonely source of […]

  8. […] younger daughter will undergo her second cardiac surgery, the surgery turned out was needed because she never actually had the disease that required that strange year of diet. We spend the days after her sister’s cold stops being contagious in a strange limbo. There […]

  9. […] refuse to treat her for stomach pains and she’ll die of pancreatic cancer because she was misdiagnosed with gastrointestinal disease when she was five, I think, and stare at the lettuce with tears in my […]

  10. […] planned activity for the day, and check myself; she’s fine. A part of her history stems from misdiagnosis her doctors made and for which they never apologized, a reality that I suspect comes from their […]

  11. […] Did she learn how to ignore hunger so well that she forgets to notice it, leaving her under-fueled and unaware at the kitchen counter, trying to do homework on a mostly-empty stomach? Did she learn addition as food traveled up and down her esophagus for an hour after lunch? […]

  12. […] each eye moves at a different speed when traveling across the page. Discovering these issues was yet another example of my internal voice — whispering constantly that something was not quite right […]

  13. […] eating. Her sly grin belies a level of frustration constantly below the surface — unable to swallow well, unable to see well, she is nagged through each day even as she is adored, cuddled, lavished […]

  14. […] I try to grasp why my daughter was so grossly misdiagnosed by doctors and why so many of them failed to see me as a potential partner in her care, the best way I know […]

  15. […] forward from that tributary into what I’ve written for years here on this blog. There was heartache beyond what I had ever tried to imagine, and great messy gushes of love I’d never be able to […]

  16. […] my daughter Sammi was diagnosed with eosinophilic esophagitis (a misdiagnosis, it turns out, but that’s another story), I suddenly had to learn to cook without dairy, eggs, soy, nuts, and wheat. The restrictions were […]

  17. […] followed the six-food-elimination diet for eosinophilic esophagitis ten years ago. My daughter was misdiagnosed, it turned out, but we didn’t know that as we ate food without dairy, soy, eggs, nuts and […]

  18. […] this sentence: I’m right, but it doesn’t matter. When my daughter was sick and I knew what the doctors were telling me wasn’t correct, it didn’t matter. It didn’t change the trajectory of her treatment for years. It made […]

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