Like the endless meals of her earlier years, Sammi’s times of sitting at the table became a fight between my instinct to fill our relationship with more than just the constant nagging to eat and my growing worry over how obviously difficult it was for her to get enough calories in a day. I could feel my blood pressure rise every time I watched her sit, holding a spoonful of uneaten food, and talk to me about what she had seen on television or what was happening at school. No food was tasty enough to hold her attention. She would rather do anything other than eat.
“Just. Eat. That. Bite,” I’d say with my back to her, clenching my jaw.
Ten minutes. Twenty minutes. Thirty minutes. After half a cup of cereal and milk, it was time to leave for school. On a good day, she would eat half of a small quesadilla, a few crackers, and one Oreo for lunch. On a bad day, just a few bites of her quesadilla. At dinner, she stopped every five minutes or so to refill her water, go to the bathroom, or inexplicably stand up and bounce next to her seat. By 7:45 — usually more than 90 minutes after dinner began — we would have to stop her meal so that she could go to sleep.
Massive doses of Prevacid — a proton-pump inhibitor that kept her stomach from producing acid — took away her symptoms, but anything less than a crazy dose returned her to us as the sunken-eyed, chronically underfed child we’d struggle to help through a day.
To say that this process was maddening is to touch only the surface of the fury it brought up in me. Why couldn’t she eat like a normal kid? I spent much of each school day in a state of cognitive dissonance, trying not to think of how few calories she was taking in, how little fuel she had to get her through gym class, recess, and a day of learning.
Her gastroenterology team told me, whenever I worried to them, that these kids with eosinophilic esophagitis are notoriously poor eaters. They feel nauseated a lot of the time. They have bad associations with food. They don’t know any different, so they can’t describe the feelings to us. This is their normal, the doctors and nurses told me.
They told me to get her to drink more Carnation Instant Breakfast. I dutifully filled the thermos she carried everywhere full of the sweet, thick stuff. It came home mostly full every day.
“Mommy, it comes up in my mouth again,” Sammi told me.
“Does it hurt when that happens?,” I’d ask, thinking of acid reflux and the lower dose of Prevacid she’d been given.
“No,” she said, “just comes up.”
“If it doesn’t hurt, then just finish it, please,” I said. And said again. And said again, every day, to my tiny third grader with her pink thermos and her jeans hanging from her hips.
The list of foods she said “came up” made no sense to me. Rice, for example. Yogurt, which did hurt when it “came up.” Bananas. Pudding. Ice Cream.
“Could there be a stricture you didn’t see on her last endoscopy?,” I asked the doctor during an early evening phone call after her last endoscopy in November of 2013, which resulted in a clean biopsy despite her worsening symptoms. Strictures can form in the esophagus of children whose eosinophilic esophagitis has gone untreated for a long time — the eosinophils cluster so tightly that they form bands of tissue that block food from going down, resulting in food impaction.
“No,” he said, “There’s no way we could miss that. The camera goes all the way down to her stomach. It would get caught.”
“Well,” I said, with my husband David listening on another extension, “Is there anything that could cause Sammi to tell us food was ‘coming back up’ besides a stricture? If her esophagus is fine inside, why would she feel that?”
The doctor mused that perhaps he should consult another specialist in his office on the topic of esophageal dysmotility, a lack of coordination in the musculature of her esophagus. Sometimes, he told us, a child is born with some uncoordinated muscle movements in the esophagus that make it feel like food is going in the wrong direction.
“Oh, she does have that,” I said. “I remember them saying that after they dilated her esophagus when she was a baby.”
There was a pause, and then the doctor said, quietly, “She had her esophagus dilated?”
“Yes.” I answered.
“Why did they do that?” he asked.
“Because they’d just corrected her double aortic arch, and her esophagus was smashed,” I said.
There was another, terrible pause. “She had a double aortic arch? Where did you have that corrected?” he asked urgently.
As I began to understand what was happening, my hands started to shake. “In your hospital.”
“Here?” he asked again.
“Yes. There. In your hospital. Your department dilated her esophagus. This isn’t in her chart?”
He coughed, like in the movies when someone is buying time. “Well,” he said. “Well, her chart, you know, it’s very long. I admit…well, I just haven’t gotten a chance to read it all the way through.”
David and I were quiet on our end of the phone, staring at each other across the unwashed dinner dishes, one of them full of Sammi’s uneaten dinner. Our daughters were upstairs, waiting to be taken to bed, and then, after an unendurable silence, David said, “What is our next step, doctor?”
The doctor said things — things about consulting his partners, reading more, doing more research, getting back to us. Stay tuned, he said. We said goodbye. David and I looked at each other again, and Sammi called from upstairs, “Are you done on the phone? Is it time for bed?”
Something had gone very wrong, but parenting doesn’t take breaks for things that go wrong. We had to wait for the doctor’s research, his consulting, his reading of her chart now, three years into the diagnosis.
And before our waiting, as a canyon opened between us and our daughter’s medical care, we had no choice: we had to sing our daughters to sleep.