Preparing for our trip to Pittsburgh was more emotional than anticipated. Not the routine gathering and packing of things, but sifting through medical reports to provide background on my son’s experience coming into this world. Early on I assembled a binder divided into sections – hospitals, early intervention clinics, along with a dozen others – for collecting the medical and therapy reports that would accumulate in time. Jasper is nearly two years old. His baby book remains incomplete, lines left blank for milestones he did not reach on time, empty squares where photos should be. Instead the priority is managing this medical book, rearranging, expanding, updating. Consulting the book is emotional. Gathering those early reports is particularly difficult. Remembering, reliving. Reading about my newborn son in cold medical jargon is a harsh reminder of how difficult our beginning was.
In summer 2012, prior to strabismus surgery to help align Jasper’s eyes, I contacted Dr Christine Roman-Lantzy. As far as I could tell from my research, she was the expert on cortical visual impairment, or CVI. Dr Roman literally wrote the book on assessment and intervention for CVI, the leading cause of visual impairment in children. I emailed Dr Roman late one night after Jasper was in bed. This time of night had become the habitual time to research and contact experts in stroke recovery, neurology, always searching for our perfect expert. Jasper’s surgery was scheduled for the end of June. Dr Roman replied to my email a few weeks later, and asked if we could talk by phone. In our twenty minute conversation, I learned more about my son than I ever had from any of his doctors or therapists. I’m told it will be years before I really know what he sees. Dr Roman replied, I can tell you right now what he sees. The next day I called her assistant to make an appointment. Jasper’s summer school break was coming up and I assumed we would spend some of August making our way to Pittsburgh. Instead her assistant said that the next available appointment was not until 2013, in January. We would have to wait a good six months to see our perfect expert.
Getting up at 4:30 in the morning for a 7 a.m. flight to Pittsburgh was hard. And made worse by Jasper hijacking my plan to quietly transfer him, sleeping, from cozy warm bed to car seat. He woke up ten minutes after me, crying, before I could even get dressed. Several minutes of crying, screaming, I still could not calm him down, and again wondered, is this worth it? Is it worth subjecting my child to additional stress in my quest for expert advice? In the moment it was impossible to answer that question.
Travel was smooth, Jasper was a trooper, as usual. Everyone we encountered, everyone who helped us on our way, was as nice as they could possibly be. With Jasper, it is as if we experience humanity at its finest. People helping each other along their particular path, we should be like that all the time.
Pittsburgh was cold with snow on the ground. Old grey snow that has been pushed aside, not the kind you get excited about. By evening, we had settled into the hotel room that would be ours for the next two nights. Because of the three hour time difference from Seattle, I worried that Jasper would not go to bed early enough. He dozed off at ten thirty – much later than I would have liked. I lay awake for most of the night, calculating how much sleep he would get, using different wake up times as variables. Our appointment was at nine a.m. Fatigue affects vision for children with CVI. A tired Jasper would not be as visually responsive. But there was nothing I could do. Ten thirty it was, roughly nine and a half hours’ sleep. It was not enough.
Dr Roman dressed in black, so that her clothes do not distract the child with CVI. We sat in the waiting room, along with a grandmother and mother of twin baby girls, who looked small and absolutely perfect. One of the twins had a trach. The grandmother complimented me on what a cute boy Jasper is, she asked how much he weighed at birth. Six pounds, six ounces, I replied. I wanted to add, We had a hard beginning, too. When a woman dressed in all black passed through the waiting area, I knew it was Dr Roman. She smiled and ushered the twin girls through, then motioned for us to follow.
Her assessment would begin the moment she saw Jasper. How does he use his vision to maneuver through space? What attracts his visual attention? Is he staring at the morning sunlight streaming in through the window? Is he fixated on the overhead lights? I could only guess at all of her observations.
Earlier in our appointment, Dr Lantzy, Dr Roman’s husband, the hospital’s neonatologist, had joined us. He was a jovial man, and immensely likeable. He watched Jasper move about the office, easily maneuvering a new environment. Dr Lantzy commented, He looks great! If I didn’t know his history, I would think he was a regular kid. Later, once Dr Lantzy had left, she cautioned me about his comment – appearing to be a healthy little boy, Jasper’s vision could easily be overlooked, and he might miss the proper attention, interventions, and support that he needs. This is our struggle, the grey area Jasper and I inhabit. Until now, no one had echoed this back to me. No one else got it in quite the same way.
Dr Roman described the CVI Range – a tool she developed for evaluating the impact of Cortical Visual Impairment. The CVI Range was familiar through my late night studies, and from Dr Roman’s book. Scores range from one to ten, and are divided into three Phases. Phase I is the lowest, or beginning. The end of Phase III – a theoretical ten on the scale – means CVI has “resolved,” or no longer interferes with functional vision. Resolution is like reaching, Dr Roman gestured into the air with her arms…Wonderland. She has worked with hundreds of kids with CVI. In one of our phone conversations, she told me that, of all those kids, CVI had mostly “resolved” for maybe a handful. A handful. Out of hundreds of kids. Certain other providers had given me the impression that CVI could resolve all on its own, as if resolution was a common phenomenon. These days we know CVI does not “resolve,” but there is the potential for improvement. In the end, Dr Roman conservatively put Jasper in the middle, in Phase II. She emphasized that intentional CVI interventions are required for improvement. She estimated he might reach Phase III over the next year or so.
We would return to Pittsburgh in October, when the landscape will be awash in the kind of brilliant fall colors, yellow, red, that Jasper prefers. Until then we will do all we can to move closer to Wonderland.
Originally published Saturday, January 12, 2013.