Need to be seen

The first phone call came about a month ago, on a day I wasn't in clinic. The phone nurse had left me a message: Rosie's mother wants to know why she keeps turning in circles."

I had never met the 10-year-old Rosie, but looking through her old records, I found that she has a non-specific kind of global developmental delay--something we used to call MRCP, for "mentally retarded/cerebral palsy." I also found that this wasn't the first time her mother had called with concerns about Rosie's circles--over the last five years, there had been at least as many calls with the same question, and Rosie's propensity to turn had been a major topic at all of her well-child checks from as far back as infancy.

I called the number in the chart, but it had been disconnected. I asked the office staff to see if they had an updated number, but there was none. Over the next two weeks, I got two more messages with the same question from the same non-functioning number.

Each time I heard the busy signal, I felt a small wave of relief--my game plan for the phone call had begun and ended with saying, "Tell me about Rosie's turning," and I didn't think I'd have satisfying answers for her mother. I also felt some concern, however: the persistence of the question combined with the difficulty establishing contact made me wonder about the safety and reliability of Rosie's living situation.

Three weeks after the first phone call, Rosie popped up on my clinic schedule. The visit reason listed in the computer next to the visit time was "Keeps turning." When I walked into the room, two identical, close-set pairs of blue eyes stared up at me, and containing them, two similarly dysmorphic faces. Rosie's was the smaller one with the pink cheeks. "I'm Rosie," she said, "and this is my mom, May." She then stood up, raised her hands to her shoulders, and turned herself in a circle.

It took me only a few minutes to realize that answering May's question was the least of my concerns: although Rosie had significant delays with stereotypic movements, her mother had deep cognitive deficits of her own that prevented her from understanding the depths of her daughter's limitations. Although she had only slightly more comprehension than Rosie, it was enough to allow her to express one of her major concerns: "I don't want her to grow up to be like me."

Over the course of the hourlong visit, I found that Rosie does not live with May; she is instead cared for by an aunt who lives across the street. Because May didn't have the capacity to participate in making a plan for Rosie's care, I called the aunt after the visit to make sure Rosie was seeing a behavioral specialist (she was) and that other aspects of her care were well-coordinated (they were).

Afterward, I discussed Rosie's case with an attending physician in my clinic, who asked, rhetorically, "What was the purpose of that? Did she really need to be seen?" I suppose the answer depends on who I was really treating.

This visit was for May. Although she certainly came to the office for reassurance, her presence allowed her to demonstrate something she would never have been able to demonstrate with a phone call: the genuine care and concern she has for her daughter, and the barriers that keep her from translating her love into good parenting. Those barriers, like Rosie's, will never go away. And, like Rosie, we will see them whenever they need to be seen.