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Colette Philcox attaches an "FAS knot" to the lapel of her adoptive mother, Bonnie Buxton. Both are involved in a new campaign to raise public awareness of Fetal Alcohol Syndrome and Fetal Alcohol Effect. John Bird photo
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"I have read that the oscillation of butterfly wings in Brazil may set off storms in Texas." --Janette Turner Hospital
FAS Awareness Day 1999|
Fetal alcohol children: the bottle in their blood
By John Bird
The United Church Observer
When Bonnie Buxton couldn’t live with her anxiety any longer she would find herself driving down to the tenderloin district on Toronto’s lower east side. There she would cruise the rundown city blocks until finally she’d spot her 17-year-old daughter on one of the corners. Colette had been living on the streets off and on since 14, squeegeeing and turning tricks to keep herself in drugs. “I was addicted to every drug from heroin to coke,” admits Collette. “She’d hop in the car,” recalls Bonnie with passion, “and we’d go to McDonald’s where I’d buy her hamburgers and we’d talk about life — and at least I would know she was alive.”
Now, nearly three years later, mother and daughter are back on the lower east side again, but this time it’s different. This time, at 9:09 a.m., on Sept. 9, 1999, they are sitting together in the front pews of cavernous and redoubtable Metropolitan United Church, once known as the cathedral of Canadian Methodism. Colette, now 19, has been “clean off crack for three years now” and hasn’t touched a drop of alcohol during the seven months so far of this, her first, pregnancy.
Together mother and daughter listen as the church’s carilloneur, Gerald Martindale, high in the church tower, performs a series of traditional lullabies for them and the city streets spread out below s. Sleep my child and peace attend thee, all through the night. Guardian spirits God will send thee, all through the night. And as they listen, they reflect on how far they have come in a relatively short time, and how much further they have to go.
This symbolic moment of nines — ninth minute, ninth hour, ninth day, ninth month, 1999 — marks the launch of the first international awareness day for Fetal Alcohol Syndrome (FAS) and its more subtle and insidious cousin, Fetal Alcohol Effects (FAE). It’s a poignant first attempt by a group of committed volunteers to warn the world about the toxic consequences for the child of a mother’s alcohol consumption during pregnancy. And it has taken months of tireless international organizing, most of it via the Internet, by Bonnie and husband Brian Philcox.
All around the world today — from Mt. Albert Methodist Church in Auckland, New Zealand, to War Memorial Carillon in Cape Town, South Africa, to Iqaluit, Nunavut, to Kenora, Ont., and Kitkatla, B.C. — bells and drums are sounding a similar wake-up call. We’re talking, says Bonnie, about a totally preventable condition that affects up to half the people living on the streets and filling the jails in Canada today. It costs taxpayers more than any other single disability, adds Dr. Carolyn Bennett, a Toronto MP and medical doctor, and also one of the speakers here.
It was during one of their McDonald’s reunions that Bonnie first told her adopted daughter Colette she was probably suffering with Fetal Alcohol Effect, the gift of a birth mother with a binge drinking problem. None of the many doctors, psychiatrists or social workers Colette had seen throughout a troubled childhood had diagnosed or even suggested the condition, but a CBC news program listing some of the symptoms had roused Bonnie’s suspicions. And months of research had strengthened them.
“It’s not that you’re bad, or stupid,” she told Colette over hamburgers (FAE children often have a particular craving for sweet or fatty foods). “I have problems because of my migraines, your sister, Cleo, has seasonal affective disorder, and you have your own set of problems. This explains everything.”
“At first, I didn’t want a label,” recalls Colette. But as her mother talked, it began to dawn on her that maybe it hadn’t been her fault when her classmates laughed at her “because I didn’t know my multiplication tables in Grade 7.”
Bonnie says that she too, “didn’t want a label,” resisted having an excuse for her daughter’s behavior. “But if you don’t know what the problem is, how can you solve it?”
So what is the problem? Both FAS and FAE are permanent brain damage caused by alcohol poisoning of the fetus during crucial stages of its development. Alcohol in the pregnant mother’s blood passes directly into the fetus, says nutritionist Janet Budgell, who has worked with a number of First Nations communities developing prevention programs. “Alcohol kills cells.” The resulting constellation of symptoms can vary widely, both in terms of what shows up, and in their severity.
The ones that doctors most easily identify are associated with the more severe FAS, and have to do with physical characteristics, such as small head size, small eye openings, drooping eyelids, widely spaced eyes, short upturned nose and flat nose bridge, and a long flat area between the nose and thin upper lip. They can also include hip dislocation, congenital heart defects, club foot, cleft palate and strawberry birthmarks.
Colette was not diagnosed by doctors as a child, says Bonnie, “because she was not Native, and she was tall and beautiful.” The long history of racial oppression against Aboriginal Peoples in Canada (in which the United Church has become increasingly aware of its own complicity) has led to major alcohol problems and a resulting high incidence of FAS with aboriginal children. A recent study in British Columbia and the Yukon, says Budgell, estimated that one in five living on reserves in those jurisdictions has fetal alcohol syndrome.
When Bonnie and Colette searched out the doctors who have specialized in fetal alcohol disorders, like Dr. Ab Chudley in Winnipeg, her “mother’s” diagnosis was finally confirmed. Colette is living with the less visible and less severe FAE. But because the physical abnormalities are usually absent it is rarely identified. The result: the secondary, social effects that occur in both FAS and FAE are not properly identified and treated, and become worse.
Secondary effects, which also vary with age and from individual to individual, include: impaired reasoning, judgment and memory, inability to link cause and effect and understand consequences and volatile mood swings.
FAS/E children, as their self-esteem plummets because they do poorly in school and society, tend to be vulnerable to anti-social behavior, including drug and alcohol addiction, petty theft, vandalism, manipulating (and being manipulated by) others and gang membership.
“Honestly, to this day,” says Colette, “when I meet friends of Darrell’s (her fiancé), “I believe they don’t like me. And so I decide I don’t like them.” But before the diagnosis, “I had no sense of why people were like that, or why I was thinking that.”
With such a huge variation in symptoms and effects, doctors are so often hesitant to diagnose it, especially when the physical characteristics are absent and especially in adoption cases where the prenatal circumstances are unknown. Bonnie only managed to unearth Colette’s prenatal history by making (and pushing for) a special medical plea for disclosure to the adoption authorities.
People living with FAS/E need a highly structured environment where they can’t be exploited by others, says Bonnie. “They need a trustee to control their money. But the only place that is equipped to provide the control they need is the jail system. They often make model prisoners. They hate structure and control, but they do best in it.” That costs Canadian society $75,000 a year for each incarcerated person. A conservative average lifetime cost estimate to Canadian society for each individual with FAS or FAE, says Philcox, is $2 million.
It also costs parents untold anxiety, anguish and isolation as they attempt to deal with problems neither they nor the medical, education and social-service systems understand. Bonnie Buxton and Brian Philcox remortgaged their home to send Colette to private school in a desperate effort to help her cope. They got her into a two-year drug rehab program at 14 that seemed to work only while she was in it.
The brunt of the burden and the struggle has been born by adoptive parents. Biological parents with FAS children are often drowning themselves in alcohol addiction, and are little able to help deal with one more problem their addiction caused — and which may in turn be the result of their own congenital FAS/E legacy from their drinking parents.
That’s why Brian and Bonnie, with total support from Colette and her sister, Cleo, are committed to sharing their painful family story and to doing everything they can to raise awareness of this common but still little understood tragedy. Says Colette, even her own doctor told her it would be okay for her to take the occasional drink during her pregnancy. She soon set him straight, she says.
Colette’s future is still far from rosy as she faces parenthood on welfare, and all the struggles to cope with a condition that is hers for life. But in understanding and in the support of a committed family, there is, at least, hope. Colette “is highly motivated to do what her birth mother could not do,” says Bonnie. “That is give birth to a healthy baby.”