Pauktuutit: Spreading information about FAS
IQALUIT Understanding, preventing and coping with fetal alcohol syndrome was the focus of a four-day conference hosted by Pauktuutit in Iqaluit last week.
FAS, and fetal alcohol effects, is a combination of physical and mental birth defects that may develop when pregnant mothers drink alcohol during pregnancy.
“There’s prevention and there’s dealing with existing cases,” said Andrejka Lokar, national substance abuse co-ordinator for Canada’s national Inuit women’s association.
In 1995, Pauktuutit formed a national working group to discuss what information Inuit communities need to understand and cope with FAS. Since then the group has been trying to educate Inuit women about the effects alcohol will have on their unborn children if they drink during pregnancy.
How to inform people
“There’s sporadic information out there,” Lokar said. “The information that does exist in the communities generally is patchy or inaccurate. This conference was a way of bringing FAS information to a wide range of people.”
Daycare workers, health and social services workers, police officers, corrections workers, as well as birth mothers and foster mothers were among the 60-70 participants at the conference.
The message that drinking alcohol during pregnancy can cause irreparable harm to an unborn child, though more visible in recent years, is still one that many people haven’t heard or understood, Lokar said.
“There was a fair amount of focus on how to reach pregnant women, how to get the word out,” she said.
“One of the biggest things that’s been happening is an interest in learning more and an acceptance of dealing with the issues. That’s a huge leap because it’s not the type of issue that’s easy to deal with.”
Canada has no national statistics on FAS/E, but it’s estimated that one or two babies in every 1,000 born have some degree of birth defects caused by alcohol.
“The statistics that do exist are generally considered to be conservative figures,” Lokar added.
FAS/E is not genetic and can’t be inherited. That means women with FAS/E can give birth to healthy children. There is also no way to predict which babies will be harmed when mothers drink alcohol during pregnancy.
Hard to diagnose
In the North the problem is exacerbated by the high turnover in doctors and the lack of full-time pediatricians, which makes diagnosis for FAS/E children difficult. Most babies born in Nunavut need to travel south for diagnosis.
“It’s access to that specialized medical information on site pediatricians to go out and diagnosis and deal with that in an in-depth way,” Lokar noted as one hurdle.
She added discussions during the conference centered around how to cope with FAS/E when a diagnosis isn’t readily clear or available.
The birth mothers and foster mothers who attended the conference helped shed light on how they cope living with children with FAS/E.
“That was something else,” said Tuk Qatsiya, a national substance abuse co-ordinator with Pauktuutit. “I found them really brave and calm with what they’re dealing with. I’m sure everyone was touched by them.”
Improve community health
Lokar added coping with the problem and finding a solution lies in community health as a whole.
“I saw no signs of a national strategy and that wasn’t the most important thing,” she said. “The most important thing was that community members got some resources, got some ideas, to bring back to discuss in their communities on how they want to deal with this.
“There are issues related to drinking in general. There are issues related to support of pregnant women,” she added. “It touches on so many issues.”