I first saw Daniel (not his real name) as a premature infant when I was a neonatology fellow at the Hospital for Sick Children (HSC, or Sick Kids) in Toronto. Daniel was born at twenty-six weeks. In the first week of his life, he developed a major bleed into the right side of his brain, damaging the areas that would normally control the left side of his body.
A twenty-six-week infant is tiny. Daniel at birth weighed 750 grams, about a pound and a half. When I started in neonatology back in the 1970s, he would have had, at best, about a fifty-fifty chance of surviving. Daniel survived, but the common wisdom at the time was that the damage to his brain was permanent and would lead to disability. The expectation was that he would have difficulty with both gross and fine motor skills. We knew he had a brain lesion so he was started in therapy fairly early. To my surprise, the disabilities that developed in Daniel as he grew from infancy to childhood, as measured on a standardized scale of function, were not too bad. As I expected, he limped on the left side, landing on the front half of his foot, not his heel. His left arm hung at his side and did not swing normally when he walked. His right side was unaffected and his speech and cognition were normal. I diagnosed him with a left-sided hemiplegia, a type of cerebral palsy that affects the motor functions just on one side of the body. Hemiplegia is found in roughly 40 percent of all children with cerebral palsy, and, like Daniel, 99 percent of these children are able to walk.
The Neonatal Follow-Up Clinic, where I worked, tracked patients for only the first three to four years. Daniel had been discharged for several years when his mother phoned me with news. She told me he was now playing soccer, not just in a league that accepted children of diverse ability, but in a league for competitive, able-bodied children.
The hell he is, I thought.
What I said was, “Oh?”
I didn’t believe her. Daniel being able to play competitive soccer was outside my understanding of hemiplegia. I assumed, as many doctors would have, that an overly optimistic mother was seeing a degree of recovery that just wasn’t there. Still, I arranged for her to come in with the boy so I could see for myself. When they came, I had him walk up and down the hallway to confirm that he still had the typical gait of a child with mild spastic hemiplegia. He did.
Then I asked him to run.
And, to my astonishment, he ran like a normal little boy, with an easy, balanced stride and reciprocal arm movements. He performed tight pivot turns, at speed, on both legs. Even the left leg, which had a limp when he walked, performed perfectly when he was running.
For a moment I was speechless. (Anyone who knows me knows this rarely happens.) Then I said, “You can’t do that!” And I meant it. I could not, for the life of me, figure out what was going on. We all know children learn to walk before they run. It’s a phrase embedded in folk wisdom. And yet, here was a child who had turned conventional wisdom upside down.
My first instinct was to think of Daniel as an outlier, an exception who somehow defied the rules. The natural history of cerebral palsy has been studied and described over a period of decades, and Daniel’s ability to run so well didn’t fit the description. It was incomprehensible in terms of the accepted theory of permanent brain damage that my fellow physicians and I understood. Which is why I said, “You can’t do that!” What he was doing was impossible.