Secondly, I want pediatric doctors who will not frighten or dismiss my children.
Thirdly — and isn’t it always at best thirdly, where I come in? — I want pediatric doctors who can see me and the other adults around my child as valuable pieces of the puzzle they need to assemble in order to accomplish the main goal (see “first and foremost” above). There was never a chance that I would take either of my daughters to see a doctor who didn’t qualify for my first criterion, and if there were multiple options that fell into that category, I’d make the decision based on the best qualified in my second criterion.
I largely gave up trying to fulfill the third.
In fact, over the years, I stopped bothering to even tell pediatric doctors my name. They almost never remembered it. Every phone call from a physician began, “Hello? I’m looking for the parent of Samara Lewis?” When I said, “This is Debi,” invariably the answer would be “Are you a parent?” Even voicemails or messages I left with advanced practice nurses — the gatekeepers of the medical specialty physicians — in which I would leave my name would be returned with that same lack of regard for my individuality. I was “the parent of Samara Lewis” or, even worse, doctors and nurses would simply call me “mom.”
“Well now, mom, don’t you worry. We’ll see her in our clinic this afternoon.”
“Is this mom? Nice to meet you. I’m Dr. Susan Smith, and I’ll be doing the anesthesia today.”
Despite the multiple scrawls all over every chart Sammi had in every doctor’s office, apparently there was nowhere for anyone to write my name. I fantasized about wearing a name tag: “Hello, my name is NOT MOM.”
Every so often, I’d be graced with a “Mrs. Lewis,” but no doctor ever looked me in the eye and said, “Debi, you spend every minute of every day with this baby. What do you think?”
The beginning of the final path, the one that led to the first big cardiac diagnosis, came in the fall of 2006. A friend had been visiting with her baby, who had been oozing green snot and gave Sammi a cold which had landed her in the hospital. Our pediatrician — a wonderful doctor who has still never, to this day, called me anything but “mom” — suggested we take Sammi back to see the otolaryngologist who had diagnosed her at 6 weeks with laryngomalacia. Freshly home from the hospital, I called that practice and waited on hold, nursing a dozing Sammi in my lap.
When I got the advanced practice nurse on the phone, I explained the story to that point: diagnosed with laryngomalacia at 6 weeks, multiple hospitalizations for respiratory infections, low oxygen saturation, chest retractions, very tiny for her age, wet-sounding breathing, and me feeling nervous and suspicious about her age and her reactions to colds.
“Sorry, mom,” she said, “we can’t really get her in to see anyone until November.”
“November?,” I asked, shifting Sammi up to my shoulder to burp her, “That’s two months away! That’s really the soonest?”
“Yes,” she said, “I’m so sorry. You can keep calling and see if anything opens up.”
I sighed, “Ok, I’ll take the first available in November.”
The nurse paused, “Is there static on this line?”
“Oh,” I said, moving Sammi back down to my lap, facing down, “No, sorry. That’s my baby. She breathes like that after she nurses. It’s loud.”
“That’s your baby?” the nurse asked, quietly.
I said yes.
“Can I hear that again, mom?” she asked.
“Sure,” I said, suddenly both frightened and hopeful. I picked Sammi up to a seated position on my lap and held the phone near her mouth. She rasped and gurgled as always. I brought the phone back to my ear. “Was that enough?”
“Yes,” she answered. “I’m going to get her in this week. Can she come in this week?”
We could. Mom and baby could come in that week, and did, that week and countless other weeks, over and over to that children’s hospital to see that and many other specialists. In all that time, only one doctor would ever call me and my husband by our names. It seems a small thing — and it was, in comparison to the quality care Sammi received — but dismissing me as anything but the next in the series of moms, the role and not the person, that made it harder.
Few medical professionals ever really saw me. They looked right through me — I became a ride back and forth to the doctor, a reporter of facts, a dispenser of medication, a cook for whatever medically restrictive diet Sammi would come to be on over the years. I was lower-case mom, and I resented it, even as I put that resentment aside in the name of answers and treatments.
It doesn’t have to be this way. I’ve communicated with many other parents of chronically ill children — or even perfectly healthy children — who have pleasant, personable relationships with their children’s doctors. Specialists seem less friendly, with surgeons the least likely to know even their patients’ names. This doesn’t make them bad doctors, and I’m willing to admit that it may be this detachment that allows them to get through years and years of what would otherwise be painful encounters with frightened human beings in pain. Disassociate, and what they’re left with are a list of problems to solve, not lives to improve.
Funny how that works, isn’t it? I would come to learn that lesson by osmosis.