I was watching tv with my family over dinner on Martin Luther King, Jr. Day last week when the phone rang. The caller ID told me that it was the children’s hospital where my daughter spent years being treated for issues stemming from a congenital heart defect (even though not all of her doctors realized it). We’d not had a call from that hospital in over a year.
“Hello, is this the parent of Samara Lewis?” someone asked.
I walked several rooms away from my family and answered, “Yes, who is this?”
“Thank you ma’am, this is the gastroenterology practice at [hospital name]. We’re just calling to discuss the socioeconomic impact of Samara’s treatment for eosinophilic esophagitis. Do you have time for a quick survey?”
I paused. I paused for so long that the woman asked if I was still there. I paused long enough to talk myself through the waves of anger, heartache, and indignance that crashed over me as I pondered the audacity of that question. I paused long enough to think about how I’d like to answer that question.
The just-plain-economic impact of being diagnosed with a disease like eosinophilic esophagitis is something I almost never stop considering. Its impact hit every single person in our family, every day, for years. It touched me and my husband. It touched our other daughter. It touched Sammi’s grandmother. It touched her aunt and uncle who cooked and experimented on new foods for her, it touched our friends who cooked for her in brand new pots after chopping on brand new cutting boards.
For the year of Sammi’s six-food-elimination diet, groceries cost roughly three times what they had cost before. If we left the house, we carried food with us in coolers we bought new, with new ice packs, in new reusable plasticware. In her school, we paid to replace the Play-Doh (gluten!) with heavy modeling clay that cost several hundred dollars for the year. At least once every other week, I made a complicated expensive allergen-friendly meal that tasted like warmed garbage, and I threw it all out only to make another batch of expensive allergen-friendly pancakes that left Sammi still hungry.
When Sammi was scheduled for an endoscopy, my husband took one of his fifteen paid days off per year. I couldn’t work those days either, but as a freelancer, I couldn’t get any paid days, so I simply lost a day’s potential income. We drove to the hospital, parked, and bought hospital hash browns and coffee while Sammi’s gastroenterologist looked into her esophagus, clipped several small pieces out of it to send off for biopsy, and then came to us to let us know that nothing was new. We waited for Sammi to wake up completely from the anesthesia, then paid $8 for parking and drove her home.
The social impact of this disease is harder to quantify. At the time of her diagnosis, Sammi’s new friends in kindergarten knew her as the girl who was always leaving school to go to the hospital, or as the girl who couldn’t eat anything. Or they knew her as the really tiny girl, the one who adults always asked if she was really five years old, the one who couldn’t reach the hooks in her locker or the water fountain.
Poor nutrition caused by her inability to swallow — which the gastroenterologist promised would improve when they found the offending foods — kept her attention span short and her temper shorter. Parenting a five year old, six year old, seven year old with no patience and a constant gnawing hunger is an exercise in patience and ignoring one’s own needs. Being the sister of a child like that meant that there was never a board game after dinner, or a walk after dinner, or a movie with dinner, or a meal that ended sooner than bedtime. Being the sister of a child like that meant that the food in the fridge was strange and made entirely to benefit someone else.
These are just a few things that ran through my head when the woman asked me if I would talk about the socio-economic impact of life with eosinophilic esophagitis. Instead of answering her question, though, I asked her my own.
“Do you have access to my daughter’s chart?” I asked, my fingers digging into the upholstered chair in my dining room.
“Oh, yes, I mean, I can access it, but I need to ask you a few questions that aren’t on the chart…”
“No,” I said, “I mean, I can tell you didn’t look at it before you called. I can tell because if you did, you’d see that eosinophilic esophagitis was actually misdiagnosed in my daughter. It was wrong. And when we figured out that it was a cardiac issue, that she was being choked inside by her aorta and she had to have surgery, we tried to get help from the doctors in your practice, but they wouldn’t return our calls.”
“Oh my goodness,” the woman on the other end of the phone whispered.
“Right,” I spat. “Right. So the only times your department has called in three years are to do these surveys — last year and now. I really have nothing to tell you. I just can’t.”
The call ended shortly afterward.
Where are the record-keepers in pediatric specialty medicine? Who writes the charts, and who reads them, and who checks them? Who pushes the mysteries to the top of the heap? Who calls in other experts? Who admits mistakes, apologizes, asks for more help so it won’t happen again?
And who takes everything they can get from a patient — one biopsy at a time — and then deserts them?
The socio-economic impact of Sammi’s illness is nothing. The spiritual impact on my soul, on my psyche and my fierce mother’s heart, is like a smoldering pile of kerosene-soaked rags. The fumes alone can catch fire.
They’d better not call me again.