Addie Rose and I went back to Vanderbilt today for the third time in seven days. We met with the adoption physician to finalize plans for reassigning ages and determining a plan to diagnose not only Addie’s bone marrow issues, and confirm her normal echocardiogram, but the reason for her developmental delay. I’m always thankful when physicians respect my opinion as a medical provider, and as we bantered back and forth different ideas, she was both receptive and insightful.
At one point, we were discussing the order in which to do tests: Which ones should we allow to come back before ordering more? What will insurance cover? We really can’t just do a smattering of tests, and expect insurance to pay. We have to take a thoughtful approach. We’re going to start with the diagnosis of general developmental delay and the proceed to more specific diagnoses as we can.
And there it was, the diagnosis: 315.9 “Developmental Delay Not Otherwise Specified”
It’s official. There’s something wrong. With MY daughter. Not just any patient, not just a favorite patient, but MY daughter. The numbers on the lab sheet did not lie. It’s no longer just speculation. It’s truth.
After an hour-long appointment with the adoption physician, we marched through the usual procession of departments. Sixth floor for Addie to have 10 tubes of blood drawn. Lab tests repeated. New lab tests ordered, including chromosomal studies. Then downstairs to radiology. Eleven x-rays: skull, arms, forearms, thighs, legs, abdomen and pelvis. We’re holding off on the bone marrow biopsy, for now.
As I sat in the various waiting rooms for the third time in a week at Vanderbilt, I realized that I was in the presence of an unintended society of parents. No one was there because their children were healthy. In fact, quite the opposite. The vast majority of parents in the room were there because their children were sent for serious health issues. The tension was palpable. Nerves were on edge as the contradictorily playful sounds of cartoons belied the assumption that everyone was happy-go-lucky. Only, no one really was. Every once in a while a child would pass through who was happy — playing with toys, reading books. Other children bore the signs of having more life experiences than a child their age should have — bald heads, masks over their pale sun-deprived faces. A few have profound delays — mask-like faces, strollers and wheelchairs for nearly adult-sized bodies. Occasionally, Addie would chatter joyfully, but even she knew, as was evidenced by the tenth tube of blood drawn, and the eleventh x-ray taken, that something beyond her comprehension was wrong. But soon enough, the promise of a sticker and some pop beads at home would break the anxiety, and bring her back to laughter.
My new society was a silent one. None of the parents spoke to each other. We were content sitting in our own private purgatory while we contemplated what the future might hold for those whom we love the most. The only conversation starter I could think of was, “So, what’s wrong with your kid?” Not very appropriate. But I know we were all thinking it. We were too tired, too stressed, too embarrassed, or too worried to ask. Perhaps we all knew that it would be too painful to be asked the same question in return.
I would have killed for some free wi-fi.
As I sat there with my daughter, who only 2 weeks ago was a “normal four-year-old,” I contemplated that this very well could be our new normal. Our new silent society of unintended members, which we entered with the code: 315.9 “Developmental Delay Not Otherwise Specified.”