How to deal with a brain-injured child

A series of tests
Jonathan and I marched into our family doctor's office the next morning. I was adamant when I told her, “My baby can't see.” The doctor took our concerns seriously; the fact that she couldn't get Dylan's eyes to fix on a light -- something that even newborns can do -- convinced her to probe further, and she immediately ordered a full assessment. The tests confirmed our suspicions: Dylan could see very little, if anything. I held Dylan close and tried to quell the rising panic. In that moment, I had a chilling premonition: what if his lack of sight was the tip of the iceberg, a symptom of some greater problem?

The period between Christmas and New Year's passed in an anxiety-filled fog. We were back at Sick Kids the first week of January 2005 for a battery of CAT scans, MRIs, eye exams and blood tests. The news was both (relatively) good and bad: Dylan still had some undamaged retina, so he might have some useful vision. The MRI results we saw during that fateful consultation were the bad news: most of Dylan's left occipital lobe and part of his parietal lobe -- the parts of the brain that control important functions like vision and language development -- were missing. We finally knew what was wrong with Dylan.

How will we cope?
As for what to expect in the future, we were told that because Dylan was so young, the implications of his brain injuries were difficult to determine. In addition to limited vision, Dylan might never walk or talk. He would likely be severely cognitively disabled.

The news was staggering. And it raised so many more questions: How would we cope? How would it impact our other children? How could I ever go back to work? How would we pay for treatments Dylan might require? Would we ever do “normal” things again, like take a family vacation? The enormity of the news was overwhelming -- the course of our lives had been forever altered.

An in utero infection
But just as devastating was learning how Dylan had acquired these injuries. Using the telltale calcifications on Dylan's brain, his eye damage and results from blood tests on both Dylan and me, doctors determined that his problems were due to an in utero infection caused by a common parasite. The doctors hypothesized that I had been exposed to the parasite for the first time during pregnancy, perhaps through a slice of medium-rare meat or an unwashed piece of fruit. I was appalled. I'd had two other healthy pregnancies and never took unnecessary risks. But something had gotten past me. I struggled not to blame myself, but I felt like I had failed my son.

While parts of our family life went on as usual -- getting the other kids off to preschool, organizing birthday parties, tending to scraped knees and loose teeth -- the next six months passed in a blur of blood tests, pill grinding and trips to the hospital. The drugs Dylan was taking to help eradicate the infection and prevent further damage can have toxic effects, so doctors had to monitor his immune system regularly. Several times I was at the hospital five times a week.

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