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It’s been 45 years since researchers revealed the risks of drinking during pregnancy. But as Vanessa Hrvatin reports, rates of Fetal Alcohol Spectrum Disorder are three times higher than previously believed — just as more women are drinking, and drinking more, than ever before. In the first of a three-part series, Postmedia’s Michelle Lang Fellow explores the challenges of eradicating one of the most common — preventable — developmental disorders and what’s at stake if we fail.
By Vanessa Hrvatin
The hangover wasn’t a surprise.
It was the first day of 1986 and Tracey Knowlton had been to a big New Year’s Eve party the night before.
Then 24, she was already the mother of a baby girl. But she knew she didn’t want more children, so she was back on birth control and back on the job in North Bay, Ont., as a supply technician with the military. She also made time to be with friends from work — which often included drinks.
“Alcohol was just part of the environment,” she recalls. “It was nothing for us to go out for lunch and have a couple beers and a sandwich. On Friday nights everybody went out, so there was lots of drinking.”
But this hangover was different. “I felt this thing in my belly,” says Knowlton.
“By then, I was already 18 weeks pregnant.”
Knowlton considered giving up the baby, a second daughter. She even pursued a private adoption. “But once she was born and I saw her I thought, ‘I can’t do this, I need to take this baby home.’”
Alcohol-related harms — including FASD — do not discriminate, that they affect women of all socioeconomic groups...
Right away, though, Knowlton knew something was wrong. “She was fussy, she didn’t feed properly. Just little things that kind of added up to something different,” she says.
At first, no one else seemed to notice. The family moved to Cold Lake, Alta., without incident. But by Grade 1, Knowlton’s daughter was clearly falling behind in school. In her early teens, she started lying, stealing and running away from home. Finally, at 14, she was diagnosed with Fetal Alcohol Spectrum Disorder.
There were few supports, however, and at 20 Knowlton’s daughter had her own child. She had also been drinking early in her pregnancy. Knowlton is now raising her 13-year-old granddaughter, who has developmental challenges associated with prenatal exposure to alcohol.
Programs for FASD have improved since her daughter was born, says Knowlton. But the blaming and shaming that often come with talking openly about drinking during pregnancy (wittingly or otherwise) have continued to have a profound impact: there is no national strategy for research and treatment, and provincial funding is a fraction of that for other brain-based disorders.
Both birth mothers and adoptive parents who spoke to Postmedia about living with FASD — more than 50 across the country — talked about marriages falling apart, families pulling away, losing friends, losing jobs.
Meanwhile, the stigma around FASD may have obscured how big a problem it really is, with women drinking more than ever before.
The first large-scale study on FASD in Canada — a survey of more than 2,500 seven- to nine-year-olds in the Greater Toronto Area released last spring — suggests up to three per cent of the general population could have the disorder.
That’s triple previously reported rates, and means that FASD could affect more Canadians than autism and cerebral palsy combined.
In her last annual report, tellingly released just after the legalization of cannabis, Canada’s Chief Public Health Officer, Dr. Theresa Tam, warned that “because of its social acceptance, we have lost sight of the fact that continued high rates of problematic alcohol consumption are leading to a wide-range of harms.”
Accidents like Knowlton’s are one concern: In the most recent national survey from the Society of Obstetricians and Gynecologists of Canada, an estimated 61 per cent of women between the ages of 15 and 50 reported an unplanned pregnancy. But drinking has also become a symbol of empowerment for women — including, for some, during pregnancy.
A flash survey of Canadian physicians conducted by Postmedia on Figure 1, an online medical community, suggests that doctors may be normalizing this behaviour: A fifth of respondents agreed that — in stark contrast to Health Canada’s official message — the occasional drink during pregnancy is safe.
All of which raises urgent questions: We’ve known for more than 45 years that drinking during pregnancy is harmful — more harmful to a fetus than cannabis, crack or cocaine. Why haven’t we succeeded in eradicating FASD? And what needs to change if we can’t?
Dr. Kwadwo Ohene Asante was one of the first doctors to sound alarm bells about FASD in Canada.
Originally from Ghana, Asante studied science at the University of British Columbia. He eventually met his wife in Vancouver and had a family. And after medical school, he set up a practice as the lone pediatrician for a vast area of northwestern British Columbia and the Yukon.
Initially, the idea was to stay for a short time to pay off debt from medical training. But soon after he settled in the north, in the 1970s, Asante started seeing patients who changed the course of his career: Babies with small heads, thin upper lips and flat cheekbones; young children who were missing critical developmental milestones and never caught up.
Asante thought perhaps they had a chromosomal or metabolic disorder. But there was nothing that accurately described his cases in the medical literature until 1973, when a colleague flagged a new paper by two pediatricians at the University of Washington. It described children exposed to alcohol in utero — with symptoms Asante immediately recognized.
At a time when alcohol was often prescribed for morning sickness and hospitals used ethanol drips to prevent early labour, the impact of drinking during pregnancy came as a shock to the medical community. The uterus itself had been considered a protective barrier until the “thalidomide babies” of the early 1960s.
But Asante believed the devastating disabilities he had been seeing in his practice could be prevented with public education. He and a team of doctors crossed the country to inform physicians and patients, policymakers and the press about the risks of FASD.
The science evolved with them. Since that first paper, published by the prestigious journal the Lancet, studies have definitively proven that alcohol passes from mother to fetus through the bloodstream and can impact the development of many systems — primarily the central nervous system, but also sensory and immune systems, among others.
Some children are born with visible physical features. Others suffer from impaired motor and sensory control. A 2010 study out of the Emory School of Medicine in Atlanta also found that embryonic stem cells exposed to low levels of alcohol led to the abnormal development of parts of the brain responsible for executive function — critical for self-control, organizational skills and goal attainment.
It’s suspected that drinking is most detrimental during the first three to eight weeks of gestation — when cells are quickly dividing to form the baby’s organs (and many women don’t know they’re pregnant) — and during the third trimester, when the brain is rapidly developing and specific organ functions are being determined.
As a result of this research, and dedicated campaigners like Asante, most bars and liquor stores in Canada now post prominent signs on the risks of drinking during pregnancy. In the United States, as well as the Yukon, warning labels are mandatory on alcoholic beverages.
And yet not all children of mothers who drink during pregnancy, an estimated 10 per cent of Canadian women, are born with FASD. While there are many risk factors for the disorder — genetics, maternal nutrition, exposure to other toxins, poverty and trauma, to name a few — their exact influence remains unclear. Nor is it known exactly how much alcohol may cause FASD, or whether the type of alcohol consumed, 13-per-cent alcohol red wine, say, versus 70-proof tequila, makes a difference.
That lack of certainty has been misinterpreted, says James Reynolds, professor of biomedical and molecular science at Queen’s University and an expert on FASD, to mean that only “problem” drinking puts a fetus at risk.
Centers for Disease Control and Prevention in the United States issued an unequivocal recommendation in 2016: Sexually active women should refrain from drinking if not using birth control.
“Too many physicians in this country still advise women that it’s okay to drink a little bit during pregnancy,” he says. “But what does it mean to drink a little bit? Or is that just an enabling statement that says, ‘Oh I really don’t have to change my lifestyle because I’m pregnant.’”
“I’ve known fellow medical professionals who are open about their own consumption during pregnancy,” notes one Figure 1 user.
To address the fuzzy thinking around FASD, the Centers for Disease Control and Prevention in the United States issued an unequivocal recommendation in 2016: Sexually active women should refrain from drinking if not using birth control.
The agency estimated that more than three million American women were at risk of exposing babies to alcohol in utero. “Why take the chance?” Anne Schuchat, principal deputy director of the C.D.C. said in a statement.
Presumably the agency was not prepared for the answers to that question: It was both impractical and insulting, wrote a reporter for Jezebel; it was “incredibly condescending,” according the Washington Post; “tone-deaf and paternalistic,” said Forbes of the C.D.C.’s advice.
As Rebecca Ruiz wrote for Mashable.com: “While the original recommendation may have been intended to ensure safe pregnancies and healthy children, its underlying message was unmistakable: Women should consider themselves first a vessel for human life and make decisions about their health and behaviour based on that possibility.”
The C.D.C. quickly backtracked, emphasizing its role in “empowering” women to make healthy choices. But the reality is that in some cases pregnancy is not a choice at all, either because of violence against women, a lack of access to birth control, barriers to education, the list goes on.
Women’s relationship to alcohol is another complicating factor in the eradication of FASD.
In the early 20th century, women fighting the scourge of alcoholic husbands and fathers — who often brought poverty and violence into the home — were pivotal to the temperance movement. Women who drank were considered as degraded as well, portrayed as “skid-row prostitutes,” says Janet Golden, a professor at Rutgers University and the author of Message in a Bottle: The Making of Fetal Alcohol Syndrome.
Knowledge that drinking could harm a baby only magnified the blaming and shaming. “The focus shifted from the woman who was essentially killing herself through alcohol abuse to the idea of having to protect the fetus,” says Golden. “In a sense what we’ve done is create three categories of people: men, women and pregnant women.”
(It’s notable that, when asked if they discuss FASD with male patients, more than 65 per cent of respondents to Postmedia’s survey with Figure 1 said they did not.)
But as women have achieved greater equality, attitudes about alcohol have shifted. Rather than a symbol of vulnerability or weakness, drinking has become an expression of power. The wine label Girls Night Out nicely sums up the independence now associated with female drinking.
Some women no longer want to cede that power during pregnancy, either. In her provocative 2013 book, Expecting Better, economist Emily Oster argues that, while heavy drinking obviously poses a risk, there is no evidence an occasional glass of Pinot will harm a fetus. Doctors advise abstinence only because they don’t trust patients to stop at just one or two glasses.
“To put it mildly,” she writes of such blanket approaches, “I’m not crazy about the implication that pregnant women are incapable of deciding for themselves — that you have to manipulate our beliefs so we do the right thing.”
As one mother points out in a confession published shortly after Oster’s book came out, the blowback around light drinking during pregnancy is particularly pronounced among women like her: educated, professional and middle-class. “They consider themselves, however arrogantly, smart enough to question the American medical standard,” she writes in Cosmopolitan. And capable of applying the same moderation to consuming cocktails as “to Milk Duds.”
This “secret code,” that at least a certain, elite, cohort can handle the odd drink during pregnancy, or knows better than to drink in the first place, seems to be shared by doctors. In Postmedia’s Figure 1 survey , fully 70 per cent of respondents agreed that they are less likely to discuss drinking during pregnancy at all with patients of higher socioeconomic status.
The stakes of talking about drinking during pregnancy can certainly be much higher for these women than their more affluent peers.
Research on FASD may unintentionally reinforce the notion that wealthier women are somehow exempt from the disorder: it has mostly focused on the marginalized — poor women struggling with addiction.
In Canada, says sociologist Caroline Tait, early studies were primarily done on reserves, in effect “Indigenizing the diagnosis.” In the U.S., Golden writes in her book, children of minority groups quickly became the faces of FASD.
The stakes of talking about drinking during pregnancy can certainly be much higher for these women than their more affluent peers. The recent headlines about a newborn taken away from an Indigenous woman in Manitoba, whose family says she was falsely accused of arriving drunk to the delivery room, illustrates their fears.
Maura Gowans, the manager of a shelter for pregnant women and new mothers in Vancouver, says the women she works with are more likely to discuss drug use during pregnancy than alcohol consumption.
But eradicating a disorder is difficult if no one will talk about it and until attitudes shift, too many women will remain silent.
“I was 20 when I got pregnant and it was unplanned,” says Waterloo, Ont., mother Wanda White. “I was going out at least once a week to the bar and drinking — not binge drinking but what I would consider social drinking. When I found out I was pregnant, I stopped drinking completely.”
That she didn’t know she was pregnant until it was too late doesn’t matter when she talks about her son, who was diagnosed with FASD at age six.
“I don’t even think people realize they’re doing it, but when you tell people that your child has FASD they have an automatic reaction, and it’s not one of sympathy or empathy — it’s judgment.”
The reality is this: More than 70 per cent of women in Canada consume alcohol, and about 18 per cent of them are at risk for chronic substance use. The impact alcohol has on women’s health is greater than it is for men. Women metabolize alcohol differently, and are more vulnerable to addiction at lower levels. According to some studies, drinking may also bring increased rates of breast cancer and heart disease.
“We need to re-consider how we view and normalize alcohol,” Dr. Tam tweeted following her report on public health last fall.
Until that happens, however, recognizing that alcohol-related harms — including FASD — do not discriminate, that they affect women of all socioeconomic groups, is critical to getting beyond blaming and shaming to tracking and treating them.
Funding for basic research will help: Until last year’s study out of the Centre for Addiction and Mental Health, many experts relied on American data — which had also dramatically underestimated prevalence.
A new project launched by The Canada FASD Research Network aims to fill in some of the gaps in the science of FASD as well, including why some children exposed to alcohol in utero seem less affected than others. So far the team has collected data from more than 1,700 patients at diagnostic clinics across the country: About 65 per cent of them received an FASD diagnosis and 35 per cent didn’t.
Scientists are also studying how alcohol consumption among men may impact offspring.
“We want to know what’s different about the brains of people who didn’t get a diagnosis but still had prenatal alcohol exposure,” says project lead Jocelynn Cook, chief scientific officer for the Society of Obstetricians and Gynecologists of Canada.
Scientists are also studying how alcohol consumption among men may impact offspring.
Fundamentally, though, FASD needs more advocates.
For better or worse, parents of children with other brain-based disorders often take on this role. But as Edmonton pediatrician Dr. Gail Andrew explains, “Our parents with FASD kids are under more stress. If the caregiver is a biological parent, then they’re also in the burden of guilt and shame and grief. And the kids who are adopted often those parents didn’t sign up for FASD, so they deal with a whole other level of emotion and stress.”
Policymakers, in particular, need to step up, says Dr. Ab Chudley, who helped develop Canada’s first FASD diagnostic guidelines. In 1999, the Public Health Agency of Canada committed $1.5 million annually for FASD prevention and support programs. But he strongly believes PHAC needs to do more. He describes the agency’s role in the disorder since the early 2000s as “minimal and negligible.”
“There hasn’t really been a champion that has moved forward with it,” he says.
That leaves the provinces to support families affected by FASD. But there is little consistency in services across the country. Access to the supports that do exist is often limited and expensive. And a general lack of awareness about the disorder means places children spend much of their time, such as schools, are ill-equipped to employ effective strategies for them.
The marginalized women so often associated with FASD — mothers struggling with substance abuse — are also desperately under-served.
“Without any federal direction you get a patchwork quilt depending on who sees it as a priority and what the government philosophy is,” says Audrey MacFarlane, executive director of the Canadian FASD Research Network.
More daunting still, there is no wonder drug to treat FASD. As Golden points out, “With FASD you’re not arguing to give people medical treatment, you’re arguing to give them social services and schooling, housing, maybe long-term income support and job support. It’s an expensive proposition.”
But research has shown that early intervention — occupational and speech therapies, medication to address anxiety or attention-deficit behaviours, training caregivers on coping strategies — can improve outcomes for children with FASD.
Knowlton is certainly hopeful. “The differences in raising my granddaughter with FASD versus my daughter with FASD back in the ’80s and ’90s is like day and night. I had no follow-up services for my daughter, not one thing,” she says.
As for stigma, well, she doesn’t have much time to worry about how other people see her.
“I have enough of my own load to carry,” she says.
Copyright Postmedia Network Inc., 2019