Obviously, there is great stigma around drinking and pregnancy. Many women with a substance use issue are afraid to admit to having a problem, for fear their child or children will be apprehended by a child welfare agency. Should they want help, there are challenges: most treatment centers do not accommodate children, or modify programs for pregnant women.
Meanwhile, with a larger number of women drinking at risky levels, many developed countries are facing an epidemiological perfect storm. Sixty-two percent of the babies in Canada are born to women between the ages of 25 and 34—the group demonstrating the fastest growth in risky drinking. The next-youngest age range is “drinking off the charts,” according to Gerald Thomas, a senior researcher with the Canadian Centre on Substance Abuse, located in Ottawa. “They’re living the culture, drinking hard.” These women may quit drinking once they know they are pregnant, but a great deal of damage can happen in the weeks before pregnancy is confirmed. Says Thomas, “The costs associated with FAS—a lifetime disability—are massive.”
It has been roughly forty years since fetal alcohol syndrome (FAS) was first described as a clinical diagnosis, and it is widely accepted as the leading developmental disorder in the world. It is the primary cause of mental deficiencies in developed countries. Fetal alcohol spectrum disorder, or FASD, is an umbrella term that encompasses four lifelong conditions including: FAS, partial FAS, alcohol-related neurodevelopmental disorder (ARND), and alcohol-related birth defects (ARBD). All are preventable and are caused by prenatal exposure to alcohol. FASD is associated with a broad array of physical defects; cognitive, behavioral, emotional, and adaptive functioning deficits; congenital anomalies, such as malformations of the cardiac, skeletal, renal, ocular, and auditory systems, among others.
Full-blown FAS and partial FAS—typically, one case of the first for every four cases of the second—are marked by a set of physical conditions, with partial FAS having a subset of those fully observed in FAS. These include a flattening of the middle groove between the nose and the upper lip, known as the philtrum; a thin upper lip; small eye openings; droopy eyelids; a wide distance between the two inner eyelids; a small head. The more severely affected the facial features, the more severe the brain effects.
Alcohol-related birth defects relates to the damaging teratogenic effects that alcohol can have on developing cells and organs. Alcohol-related neurodevelopmental disorder is typically referred to as an invisible disability without the distinctive dysmorphic face and classic growth deficiency. It is represented by a complex pattern of behavioral or cognitive abnormalities.
The consequences of FASD are diverse, affecting individuals, their families, and their communities in a broad way. People with FASD may have significant issues with memory, attention, decision making, and self-care. They may have problems with organization, completing tasks, controlling their emotions. These impairments are also accompanied by complex and highly detrimental health conditions. Without crucial support, those affected by FASD are at high risk of developing such secondary disabilities as mental health problems or alcohol or drug issues. They may have difficulty with the law, school, employment, and homelessness.
“There is no amount of alcohol that has been proven to be safe during pregnancy,” says Svetlana Popova, a senior scientist at Toronto’s Centre for Addiction and Mental Health and one of three leading investigators on a twelve-country international study on the prevalence of FASD. “Even half a glass of wine can be damaging to a fetus. It could damage any one of a number of organs, or the central nervous system.”
Twenty-two years ago, Lynn Cunningham’s stepdaughter gave birth to Andrew, a child with FAS. When he was eighteen months old, Cunningham and her husband took the boy into their home. “He was the child who would not turn off,” says the Toronto writer and professor. “Andrew was indefatigable, and would bounce around, creating messes wherever he went. He would do things that even little kids knew not to do—jump in puddles near laundry. All the clothes were marked by mud. It didn’t extend to doing extremely dangerous things—he wasn’t a darter into traffic—but he didn’t have a sense of caution. He used to fly into rages and rants.” She called him “Tornado Andrew.”
Today he is enrolled in a music production course at community college—an extraordinary success story for someone born with FAS. He’s living on his own. He’s not in jail. Still, he counts on Cunningham for a great deal, including a weekday wake-up call. According to Cunningham, conventional wisdom says that those with the syndrome operate at two-thirds their chronological age. That will put her close to eighty by the time he will be functioning as a twenty-five-year-old. “The issue is: he relies on me for a lot of stuff—am I going to be able to do this for him as long as he needs me?”
Common logic says that the worries troubling Cunningham will be shared by a growing number of women, if you consider the growth in risky drinking. As she wrote in a magazine memoir: “The perception that FAS is largely confined to the indigenous population is an enduring fallacy.”
Jan Lutke agrees. The Vancouver mother has adopted twenty-five children, sixteen with the diagnosis, ten of whom still live with her. She is well seasoned in the disability and its many ramifications. Says Lutke: “If you’re white, you’re ADHD. If you’re not, you’re FASD. If you look at an aboriginal kid, it’s the first thing people think of. If you look at a Caucasian kid, it’s the last thing people think of—as if skin color protects you from the effects of alcohol. We think this disability only affects the disenfranchised or the poor. This is not an ‘us-or-them’ issue: it’s an ‘us’ issue.”
Looking at the results of three studies, one might conclude that the older, educated, professional woman is more likely to drink during her pregnancy than her younger, less-educated counterparts. Perhaps not surprisingly, the numbers out of the United Kingdom are high: a recent report indicated that of those who drank before they conceived, 55 percent drank when they were pregnant. Those most likely to drink included women aged thirty-five and older (61 percent), compared with those under twenty (47 percent).
Last year, the U.S. Centers for Disease Control and Prevention (CDC) reported that one in thirteen American pregnant women said that they drank, with the highest prevalence for those aged 35 to 44 (14 percent), white (8 percent), college-educated (10 percent), or employed (9 percent). Pregnant women who were employed were nearly 2.5 times more likely to engage in binge drinking than their unemployed counterparts. Women who were bingeing reported doing so an average of three times a month, consuming six drinks per episode.
Meanwhile, a 2012 study in Australia reported that 47 percent of women consumed alcohol while pregnant, before their pregnancy was confirmed; and 19.5 percent consumed alcohol while pregnant, knowing they were so. Older women with a higher household income were more likely to drink after they learned they were pregnant. Ninety percent of drinkers under 25 quit drinking once their pregnancy was confirmed, whereas only half of those aged 36 or older did the same.
Says American scientist Phillip May, arguably the leading researcher on FASD prevalence: “How do you get over the middle- and upper-class arrogance around FASD? ‘I can have three or four glasses of wine a week, and my child will be fine!’ ‘These are lower-class problems. They are the ones with public health problems.’ And they likely will be fine, too. Their children will have an IQ of one hundred. They may have a menial labor job—when they could have been an engineer.”
Currently appointed as a research professor at the Gillings School of Global Public Health at the University of North Carolina at Chapel Hill, May says that both FAS and FASD are more prevalent than previously estimated: “Roughly two to seven children per thousand have fetal alcohol syndrome in North America and Europe, and two to five percent have FASD. In the United States, Canada, and especially Europe, between fifteen and thirty percent of all kids have been exposed to a significant amount of alcohol as fetuses. They may be born normal, or close to normal—but who’s to say if they would have been geniuses h
ad they not been exposed? The moderately exposed kids might have adequate nutrition, stimulation, and education—so for many aspects of life they may perform in the normal range. It may show up in poor judgment, an inability to do math, or more complex tasks of reasoning. Meanwhile, in Scandinavia and the United Kingdom, up to twenty percent of mothers are drinking at very high levels in the first trimester. And many are drinking at levels higher than they report. I can tell you: fetal alcohol spectrum disorder and fetal alcohol syndrome are far more common than I ever dreamed they would be.”
If you look at special populations, the numbers of those with FASD are high. In the United States, up to 35 percent of adoptees have been reported to have FASD—the majority being from Eastern Europe. In Sweden, up to 30 percent of adoptees from Eastern Europe are reported to have FAS. The proportion of those with FASD in correctional systems is also very high: up to 23 percent in Canada.
One of the keys to this story is delayed pregnancy recognition. You can ask a woman if she drank during a particular pregnancy and she will say: “I quit as soon as I had a positive test.” Much can happen before that pregnancy confirmation. According to May, many children may not reach their full potential: “A lot can happen in the eighth, tenth, twelfth week. That exposure seems to lead to cognitive and behavioral problems. There are all sorts of epigenetic reactions that we don’t understand. If a man drinks heavily, he can have abnormal sperm. A kid can get a deficit from both sides.”
Personally, I’m fond of Jody Allen Crowe’s initiative: installing pregnancy test dispensers in bars. Last summer, the founder of Healthy Brains for Children placed a dispenser in the women’s washroom at Pub 500 in Mankato, a college town in southern Minnesota. For three dollars, a woman could find out if the drink she was about to order was a good idea or not. Smart innovation.
So too is the labeling of liquor bottles—but May is skeptical. “Bottle labels have a minimal effect—for light drinkers. If women are already drinking, it means nothing. But the next generation? They will grow up knowing that alcohol and pregnancy don’t mix. It’s just like seat belts—seat belts save lives. We accept this now. They will know that you should stop drinking before you try to conceive.”
According to Popova, more than 50 percent of pregnancies are unplanned in the developed world, and closer to 70 or 80 percent in some countries in the developing world. She says that five years ago, we believed that drinking during the first and last trimesters of pregnancy was the most harmful. The most recent evidence from animal studies demonstrates that the fetus is vulnerable to alcohol at all stages. She adds that women should abstain from drinking during breastfeeding: “Alcohol consumed by the mother passes easily into her breast milk at concentrations similar to that in her bloodstream. Therefore, alcohol goes directly to the baby, which might result in impaired mental and motor development, changes in sleep patterns, and growth deficits. FASD is largely preventable. What woman wants to damage her child? Unfortunately, the public tends to stick with ideas that they like—or are convenient.”
As part of the international study guided by the World Health Organization on the global prevalence of FASD, Popova will be leading a school study of eight thousand children aged 7 to 9 in the Greater Toronto area of Canada. The research team will identify those children who have growth deficits, learning disabilities, and behavioral problems. These children will then have a dysmorphology assessment, measuring their facial features. They will also undergo psychological and developmental testing. Their biological mothers will be asked about nutrition, stress, alcohol, and tobacco use during their pregnancy with their children in the study. If a mother does not confirm she consumed alcohol during her pregnancy, those assessing her child will not be able to assign an FASD diagnosis, no matter how obvious the case. The hurdles are immense.
Sarah Mattson, who is associate director of the Center for Behavioral Teratology at San Diego State University, focuses on better ways to determine whether certain children were exposed to alcohol as fetuses. She and her team look at adopted children or children in foster care, ones for whom there is a social worker’s report or some other confirmation that the birth mother used alcohol while pregnant. “We do a slew of neuropsychological testing to find out what the child’s deficits are. We are looking for a marker that says if the child has x, y, and z, he has a high chance of having been exposed to alcohol. With every study, we’re getting a little bit closer to finding one.” I ask Mattson: does she believe there are children in the school system who are labeled learning disabled, who actually have FASD? “I am sure there are kids who are not being recognized,” she says. “Absolutely. Having the facial features is not important—the exposure to alcohol is, and whether they show similar behavioral and cognitive features.”
“I binge drank through my pregnancy,” says Janet Christie, matter-of-factly. “I really loved drinking. I knew when I was pregnant that it wasn’t good to drink. I was so ashamed. But I had no one to talk to about it.”
Sitting in a sunlit corner of Vancouver’s Westin Bayshore hotel, Christie has agreed to talk about being the birth mother of a child with fetal alcohol spectrum disorder, on one condition: that she can continue folding brochures throughout the interview, small pamphlets advertising her services in training addiction recovery coaches. With that settled, she launches into the full story of how her drinking started, and how she got sober twenty-five years ago.
“When I was really young—only eight—I tried to drown myself. I was shy, timid, internally isolated. Then, when I was thirteen, I had my first drink. I will never forget it: before that, I felt worthless, so empty. A hole where my heart should have been. That first drink was amazing—I loved it. It didn’t matter that I woke up in a stranger’s car with a sore crotch and blood on my underwear—I was sexually assaulted.”
Fast-forward to her sobriety. “I was one week sober, I’d found a recovery support group, and the phone rang. It was the police. They had caught my son, who was twelve, in a crack shack. I didn’t even think he played with matches! This was my introduction to recovery. In those horrific years, I was so afraid he was going to kill somebody—I felt like I was in the front line of a war.
“I had known since he failed grade two that I might have caused his problem. And that’s when things started to go awry. He had undiagnosed FASD. I read the research papers, and I told the principal, ‘I think I caused this.’ He said, ‘Just go home and forget about it’—as nonchalantly as ‘There’s a toilet roll that needs to be changed.’ Then he said, ‘I bet ninety-five percent of the kids here have FASD.’ I was giving talks at treatment centers, telling my story, and a professional said to me, ‘You caused it—deal with it!’ But another counselor said, ‘Tell your son he doesn’t have to live like this anymore. Get him diagnosed.’ So, when he was fifteen, I did. He cried.”
At the time, her son couldn’t read. “He would skip lines and not realize it,” she says. He couldn’t add, and he couldn’t comprehend what he was being taught at school. He was ostracized. Without identification of what he had, he had no support. “He felt put down by teachers, blamed for not trying hard enough. He wasn’t connecting any actions with consequences. He was full of rage. I was worried I would open the paper and learn he had killed someone.”
Christie, who lives in an ocean-view house in Sooke, British Columbia, speaks publicly about her life in an effort to help other women stop drinking while pregnant—and to try to reduce the stigma around the subject of addiction. “The world doesn’t always feel like a safe place when you’re a birth mother of a child with FASD,” says Christie. “This may be the most stigmatized area of a very stigmatized subject. It’s hard coming out—like you’re a leper. No wonder we don’t have more women talking about it. Years of tears—how many times have I told my story and cried through it? But there is a freedom in this.”
Polished and well spoken, she knows that she doesn’t fit the stereotype of an FASD mom—and this is part of why she’s taken on the role of speaking
out. “We need to break the silence barrier. Because it’s alcohol and it’s a revered substance, it doesn’t get talked about in our society. The myth that this only happens to certain women is wrong. It pushes middle-class women even further into the closet. White women just pretend their kids have learning disabilities.”
For years, Christie’s son skipped class, and was kicked out of several schools. Christie joined a parent group for those with FASD children. Her son pawned her jewelry. He had drug debts. He would disappear for days and then end up with some criminal. He would constantly break his hands, punching walls, breaking doors, coffee tables. She kicked him out. “I tried to do the tough-love thing,” she says. For a while, he came back home and lived in her garage, sleeping in her car and cooking on camping equipment.
Over time, with her support, he got on the right track. Christie sees his life as a success, although he struggles. Today he is no longer using drugs, is employed in construction, and has a stable, loving relationship with his girlfriend. His twelve-year-old daughter, whom he sees regularly, is being raised by her grandmother on her mother’s side. “We have to celebrate the uniqueness of brain differences, and my son is a perfect example,” says Christie. “He lives a very functional life, pays his taxes. Many people, if they are properly supported, do fine. We have to measure success individually. I am so inspired by his tenacity. He knows why he struggles. But he has a great sense of humor and a great outlook on life. And things are gradually turning around for him.”
Christie’s passion is a program she launched in 2004. Called Moms Mentoring Moms, it is a support group for women struggling with addiction while pregnant; some have lost custody of their children. “Peer support is really fundamental for anyone wanting to overcome an addiction,” says Christie, and peer support is what the program offered for women who wanted to stop drinking—support without judgment. Launched with eighty thousand dollars from a British Columbia nonprofit agency and the provincial Ministry of Children and Family Development, the group provided a weekly drop-in for women, as well as a mentor to accompany them to any appointments: navigating the search for housing, dealing with social workers, applying for welfare, visiting the food bank. Many women found sobriety through the group. The program ended when the funding ran out after a year.
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