Cause and Effect: Fetal alcohol syndrome is preventable, incurable, and surprisingly common. Still, it brought me Boop, who has redefined my life
July 4, 2012
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 andFAS, 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.
Despite the daunting list, most FAS kids aren’t what medical professionals privately refer to as FLKs (funny-looking kids). The worst effect they suffer, and the one that is universal, is invisible: irreversible brain damage that causes developmental delay. When kids are young, though, even this isn’t necessarily obvious. Andrew didn’t walk until he was fourteen months, and didn’t start saying simple sentences until he was past two, but “normal” kids can be slowish to hit milestones, too. Still, caution wasn’t his forte. If he saw a puddle, he had to jump in it. If he encountered a dog, pit bull or poodle, he had to pat it. As Andrew got older, this impulsiveness and paucity of prudence would increasingly be his bêtes noires.
Other bêtes have played a part in the FAS saga. Since that 1973 Lancet article, pregnant sheep, mice, rats (albino and regular), chickens, quail, rhesus monkeys — every creature except zebras, it seems — have been subjected to the “insult” of alcohol in order to establish exactly how alcohol is a teratogen, or a substance that interferes with fetal development. However, the number of studies addressing what to do once the insult has occurred is about the same as the number of cats I have, which is two.
Essentially, this means that whether a child was diagnosed a decade and a half ago, as Andrew was, or last week, the best the medical world can offer is guarded optimism. As the SickKids geneticist concluded: “Fortunately, Andrew’s cognitive abilities and head size appear to be less severely affected than his hands, so that one hopes that his intellectual prognosis will be better than average.” Ultimately, she was right: “average” for those with FAS is an IQ somewhere in the high sixties; Andrew last tested at 76.
Six months after the diagnosis, life was almost unrecognizable. I had resigned from my job in bitterness after failing to get a promotion I had longed for. Don lost a third of his right lung in surgery and started a long recovery. A drunken Kira gave birth to another boy, who was adopted at birth, and she remained, as they say in the recovery biz, lost in her addiction.
I found myself getting up earlier and earlier each day so I could shower before Andrew awoke and started running amok, that is if my getting up didn’t also rouse him. Since his earliest days at our home, we had allowed him to sleep with us, on the grounds that he had been through a traumatic time and needed the comfort. Admittedly, out of sheer fatigue I did abandon him, howling, in his crib a few times, which just motivated him to learn how to climb out of it, perhaps to launch into one of his favourite activities: pulling all the pots out of a cupboard to use for his Neil Peart imitation. Those were the days, too, of the seemingly spontaneous biogenesis of small plastic objects (which we dubbed, not too fondly,CPS, for “cheap plastic shit”). I scrambled for freelance work in between hitting second-hand shops for toddler paraphernalia and attending meetings.
In the absence of a cure, the FAS community is big on early intervention, which is apparently code for meetings: meetings with Andrew’s mouthpiece from the Office of the Children’s Lawyer (“You have to understand,” we explained, “he doesn’t talk yet”); meetings with the Child Development Clinic at SickKids; home visits from Children’s Aid (hide the wine bottles!); meetings with the couples counsellor to try to establish a ceasefire over the should-he-stay-or-should-he-go issue…