Cause and Effect

It was one of those life-changing phone calls, only not the kind announcing you’ve won a lottery or been nominated for some big-deal award. The woman on the other end of the phone was a Children’s Aid worker in a community just north of Toronto. “Ms. Cunningham? I’m calling about your grandson, Andrew. Come and get him, or we’re taking him into care. Meet me at the hospital.”

I had the forty-five-minute drive to imagine what exactly had transpired. Andrew’s mom, my twenty-six-year-old stepdaughter, had been an alcoholic since her early teens, so I guessed booze was going to figure into the narrative in some way. Alas, I was right. Kira, nine months pregnant with child number five, had been found, again, wui — wandering under the influence — accompanied by number four, Andrew, and the two of them had been scooped by the police. She was still very slurry by the time I got there, and far from capable of reining in sixteen-month-old Andrew, who was busily toddling around the emergency ward, grabbing anything solid to whack on the walls.

Getting home meant a fifteen-minute ferry ride to Toronto Island — long enough for a significant portion of my 600 or so neighbours to note the novelty of my having a tot in tow. My husband, who’d left for a month’s work in Banff literally days before, was among the last to get the news. “Guess who’s come to stay?” I blurted. “Boop.” (Boop, and even sillier variations, was our pet name for Andrew — the kind of nickname older kids loathe when it slips out in public.) Don was basically gobsmacked. When we had married two years before, in 1990, I had been forty, he fifty-four. Kira, his only child, was a runaway at fifteen, a mom at sixteen, and even, for a while, lived on the street in Communist Prague. Her two older children were being raised by their paternal grandparents in central Europe; another had been adopted at birth in Canada. Don’s heart had already been ripped out, and a second round of parenthood was as appealing as more vivisection.

There was another significant reason for Don’s dismay. Just before he left town, he had been diagnosed with lung cancer. He had postponed the tests to determine whether his disease was operable until after his return, but we both knew the odds: the five-year survival rate was less than 15 percent.

Still, there’s nothing like a more immediate crisis to take one’s mind off future potential calamities. And within a few months, we discovered there was more to worry about than just instant, unanticipated parenthood. This next shock arrived via a routine checkup. The doc brought Andrew up to date on shots, checked his general health (fine), then matter-of-factly said that judging by some of Andrew’s physical characteristics and his mom’s history of drinking, he suspected fetal alcohol syndrome.

Like the majority of the population, including many doctors, we had never heard of fas. The condition wasn’t then, and still isn’t, listed in the Diagnostic and Statistical Manual of Mental Disorders, which makes it stateless among maladies. In the previous half decade, the Globe and Mail had run a handful of articles on the subject, which I may even have read, but they invariably concentrated on fas in the context of benighted locales like Vancouver’s Downtown Eastside and native reservations. As for lay books on the subject, there was one: Michael Dorris’s 1989 The Broken Cord. This related how the author had adopted a Lakota toddler, Adam, and discovered, after years of futile testing and therapy, that his son’s puzzling behaviours were attributable to fas. A tendency to stick chewing gum in his hair was at the so-what end of the list, while a failure to learn from experience and possessing the judgment of a housefly were at the top of the grave-issues scale. Reading this book while waiting for Andrew’s assessment was akin to leafing through Great Naval Disasters just before setting off on a cruise.

It’s hard not to notice that in The Broken Cord once again the narrative revolves around native children. The perception that fas is largely confined to the indigenous population is an enduring fallacy. It’s true that social policy debacles have contributed to disturbing rates of alcoholism, and hence fas, among native peoples; in a study of one isolated BC community, incidence of the syndrome and its variants was found to be nearly 20 percent. However, conservatively, in Canada overall what’s now called fetal alcohol spectrum disorder (which, along with fas and alcohol-related neurodevelopmental disorder includes partial fas and alcohol-related birth defects) affects roughly one person in 100, making it the leading cause of mental retardation. By contrast, the far better-known and much more mediagenic autism and Down’s syndrome occur in 0.6 and 0.14 percent of the population, respectively.

Why this high rate for something that’s totally preventable? It’s easy to imagine every woman knows that drinking while pregnant is on the thou-shalt-not list, but that’s a rather rarefied perspective. Recent, too. Even some doctors remain unconvinced of the link between maternal alcohol consumption and fas, perhaps in part because there isn’t a 100 percent correlation between the two — Kira’s first two children, for instance, were unaffected. And aware of the risk or not, if you’re dependent on alcohol, potential birth defects may not be top of mind.

Spend any time at Toronto’s Hospital for Sick Children, and the kids with bald heads, damaged bodies, and blank eyes are reminders of the misfortune that can strike as randomly as a twister. Tornado Andrew was unfazed by both the general atmosphere and the rather austere geneticist who saw him a couple of months before his second birthday. He winged around looking to snatch anything he could reach, and was far from docile while she inspected this and that body part.

Her physical exam had its origin in a short article published in 1973 in the medical journal The Lancet. Two dysmorphologists, Kenneth L. Jones and David W. Smith, reported the results of their study, which included three native children born to alcoholic mothers. The children “showed a similar pattern of craniofacial, limb, and cardiovascular defects associated with prenatal-onset growth deficiency and developmental delay.” It was this article that introduced the term “fetal alcohol syndrome” — which, it turned out, Andrew had. “He appears to be microcephalic . . . and his posterior cranial vault appears small compared to his face size,” the geneticist’s report noted. Translation: his head is small. The line between his nose and mouth is also smooth rather than grooved, his eyes are undersized, and his baby fingers and toes are wonky, with the nails tiny or absent altogether. Soon, it turned out he had another common fas characteristic: a bad jaw-to-tooth-size ratio, ultimately rectified by four extractions and $4,500 worth of braces.