It’s a hidden disorder that used to be known by the distinctive facial features of Fetal Alcohol Syndrome—now widely referred to as Fetal Alcohol Spectrum Disorder—and prevention measures are being ramped up across the province to spare future generations of Albertans the difficulties of living with the brain injury caused when a prenatal baby is exposed to alcohol.
There are now 36 000 Albertans impacted by FASD, and prisons are full of men and women who, because of frontal-lobe damage—the part of the brain responsible for executive functioning—continue to make poor choices. That in no way means that people living with FASD will end up in prison, but the John Howard Society of Ontario states, “Some researchers estimate the rate of FASD to be 10 times higher inside Canadian prisons than in the general population.”
Every day is a challenge for those living with FASD. These individuals may look physically normal but struggle with cognitive functioning and associated behavioural issues.
“That’s why I think a lot of the individuals who are impacted by FASD fall through the cracks, because they look perfectly normal,” says Lisa Rogozinsky, coordinator at the Edmonton and Area Fetal Alcohol Network. “We also know that language-wise, they generally speak above average, but that doesn’t mean that their comprehension is above average.”
Rogozinsky says these comprehension challenges include understanding abstract concepts—things like money, ownership and time—as well as reasoning, judgment and memory problems, and sensory issues.
“So you have individuals, children, adults who feel too much or don’t feel enough from what they see, touch, taste, hear and smell,” Rogozinsky explains. “So we can have a child who breaks their arm and doesn’t physically feel pain so doesn’t know the arm is broken. On the flip side, you can have kids and adults that the tags in their shirts are physically painful for them.”
Statistics gathered by EFAN show that 62 percent of women drink before they become pregnant while almost 50 percent of pregnancies are unplanned.
“You can imagine, then, how many babies are at risk of being prenatally exposed because of those stats,” Rogozinsky says. “So that’s why we get the high rates of FASD.”
Some women continue to drink during their pregnancy, not realizing the implications doing so can have on their developing child.
“FASD is certainly not an aboriginal issue,” Rogozinsky says. “When you look at the highest risk group to actually drink while they’re pregnant, it’s the higher income, higher education—so an undergrad or master’s degree—over the age of 30 and successful. So that’s the largest group who will consume alcohol within their pregnancy. That doesn’t necessarily correlate to them having the highest rates of children born with an FASD because there are so many other factors that come into play.”
Researchers at the University of Alberta have spent the past eight years studying which parts of the brain are different in children diagnosed with FASD.
Dr Christian Beaulieu says this type of longitudinal study—the same group of children, some with and some without FASD, were studied in four-year intervals—can give a better indication of which parts of the brain are different, and whether those differences can be linked to cognitive and behavioural problems, than a cross-section of the population can.
The team found the developmental damage of the brain continues into adolescence and that white matter—the part of the brain responsible for transmitting signals to other parts of the brain about how to learn and function properly—was damaged in the kids impacted by FASD.
“The main thing is that a bunch of these white matter tracks that connect to the frontal part of the brain were developing at a different rate in the FASD,” Beaulieu says. “Suggesting that, although we think that most of the injury probably happened before birth, it has lifelong implications—well this isn’t lifelong, this is into adolescence. We’d have to study up to 50 years old to see that. But it has implications of how your brain develops at later time points.”
“We know the frontal lobe is one part of the brain that develops throughout adolescence and early adulthood,” adds Dr Carmen Rasmussen. “That’s one of the last parts of the brain to develop and it’s linked with those important decision-making abilities that are very important during times of adolescence as well.”
Beaulieu says it’s wrong, however, to suggest that the brains of children living with FASD are not developing at all.
“We know that the brain is plastic, it can change,” he says, “and one of the things that our paper does show is that FASD kids do show the normal developmental patterns.”
In other words, their brains are trying to catch up but there’s just a bit less horsepower than healthy children have to reach normal thresholds for their chronological age.
“Are they going to be able to overcome it completely?” Beaulieu asks. “Probably not because it is a brain injury. That’s one of the most important things to get across, that it is a brain injury. It’s not these individuals’ faults that they’re behaving the way they are.”
Not laying blame on either those living with FASD or their mothers is part of the Prevention Conversation, Alberta’s year-long strategy to talk about FASD. It began December 1 with an emphasis on sending facilitators into communities to encourage doctors, social-service providers and other health-care professionals about the importance of conversing with—not lecturing to—pregnant women and women of child-bearing age about FASD. Alberta is also in the middle of a 10-Year Strategy to prevent FASD.
“I think the government has recognized that even though we have all these prevention efforts out there, we have to bring it right back down to basics and talk about it,” Rogozinsky says. “We just say it’s not healthy to drink anywhere in pregnancy. Whatever’s developing in the fetus at the time a woman consumes alcohol, that’s what has the potential to be damaged.”
Rasmussen agrees. “The general consensus is there’s no known safe amount of alcohol so you should not drink when you’re pregnant, but there isn’t a specific known amount that causes FASD.” She says there’s so much variability at play in the timing, exposure, type of alcohol, whether it was a binge or just one drink, even genetics.
“It isn’t [the child’s fault] but it’s also not mom’s fault,” Rogozinsky says. “I don’t think in the 16 years that I’ve been working with people in the social-services field I’ve ever heard a mom say I drank on purpose because I wanted my child to be damaged. Women fall into it, whether it’s just not knowing that alcohol causes brain damage, the woman herself may have FASD, the woman may have addiction issues, it goes so much further than drinking, what is the trauma and the violence that she’s experienced that leads into these addiction issues?”