How to deal with a brain-injured child

Originally titled "Saving Dylan," from the August 2007 issue of Canadian Living Magazine, on newsstands or click here for the back issue.

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The neurologist's words jolted through me like a seismic wave: “Part of your son's brain is missing,” he told my husband, Jonathan, and me as we stood in a consultation room at the Hospital for Sick Children in Toronto. It was clear from the MRI images the doctor showed us that something was very wrong: curly bits of brain matter filled the entire screen except for the black void in the lower left part of the scan. It was shocking to hear those cold, impersonal words about Dylan, our tiny three-month-old infant.

The numbing disbelief quickly gave way to a disturbing question: How could this have happened when I'd had such an uneventful pregnancy and delivered what appeared to be a perfectly normal baby?

Dylan fell victim to an infection
The mystery of Dylan's injuries would remain unsolved for weeks, but eventually we learned that before he was born, Dylan fell victim to an infection caused by a common parasite called Toxoplasma gondii. I had somehow ingested this parasite and unknowingly passed it on to him.

Only weeks before this hospital meeting, we were a healthy, happy family, blissfully unaware of the heartbreak that lay ahead. Jonathan and I had always wanted a big family, and we were overjoyed when our third child was born in Toronto in October 2004. Five weeks premature, Dylan was, nevertheless, a hale and hearty six pounds two ounces at birth. We were able to join Jonathan and Dylan's older siblings -- Aidan, 4, and Ella, 2 ½ -- at home just 24 hours later. With a newborn, a toddler and a preschooler, our house was a place of happy chaos.

Unusual behaviour
By six weeks, Dylan had been to all of his well-baby checkups and had reached all of his early growth milestones. But while no one else suspected that anything was wrong, I began to sense that something wasn't quite right with Dylan. As a doting mother, I eagerly anticipated that first baby smile and longer periods of wakefulness. At first, I attributed his lack of response and sleepiness to prematurity: surely once Dylan caught up to other babies his age, he'd be giving us big, gummy grins and be more aware of his surroundings.

Instead, as the weeks passed, we began to notice other unusual behaviour. Dylan's eyes seemed to be roving and rolling in an irregular way. Just before the holidays, we took him to a party, eager to show off our new little man. He happened to be very wakeful that evening, making these erratic eye movements unmistakable. I could tell that other guests noticed his eyes but felt awkward about mentioning it. A knot formed in my stomach, and after we put Dylan to bed that night, I couldn't sleep. There was now no doubt in my mind that something was wrong with my son. During the dark watches of that night, I had a terrible epiphany: he wasn't smiling at us because he couldn't see us.

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