Report From Yukon 2002 Prairie Northern Conference on Fetal Alcohol Syndrome
by David Gerry
Just as it was the underwater part of the iceberg that sank the Titanic, it is the invisible nature of FASD (Fetal Alcohol Spectrum Disorder) that makes it so difficult to recognize and treat.
The theme of the keynote address by Dr. Sterling Clarren to the 525 delegates to the May 8-10th FASD conference in Whitehorse was that we should be directing our attention to the non-obvious or invisible aspects of this condition. He pointed out that alcohol is sold using sexy images of women, which portray glamour, power etc, but the ads never suggest the connections between drinking and pregnancy outcomes.
After studying FASD at their Clinic at the University of Washington since the early seventies, in 1995 Dr. Clarren and his colleagues decided they wanted to meet and study the moms who were giving birth to the babies they were diagnosing. Their first surprise was that only 10% of the birth moms were raising their own children; adoptive or foster families, relatives etc were raising the other 90%. More disturbing was the fact that 25% of the moms were missing or dead. Dr. Clarren suggested that there are very few cancers that result in a 25% death rate in three years.
At another point in the conference, it was mentioned that 69% of these birth moms are dead by the time their children are adolescents. These moms then were all but invisible. Judging by the lack of services for women in BC who are at risk of having a prenatally exposed child, these women today are still invisible.
The next two days there were divided into two sections each. Each section had a choice of six or seven concurrent presentations. As cloning wasn't an option, deciding which of the six or seven to attend was one of the most challenging portions of the conference. The first presentation I attended described the status of FASD efforts in Alaska. The program in Alaska started in October 2000, has trained 14 teams which have diagnosed 245 people with FASD all around the State. It didn't hurt that Alaska had a representative on the US Congress Appropriation Committee (i.e. Dept of Finance) who procured for them $29 million US over five years. Samples of their results so far: 41% of those diagnosed were between the ages of 6-12, 63% of the 245 are male. For complete outline of their program and results go to www.hss.state.ak.us/fas.
In light of the increased ease of access to alcohol here in BC through longer bar openings and Canada Post's bid to deliver alcohol to homes; it is interesting to note that the State of Alaska collects about $12 million in revenues from the sale of alcohol. They calculate however that they spend $453 million to address the impacts of those sales, about a 35:1 ratio!
My next session was about providing FASD education, put on by two charismatic nurses with the Saskatchewan Institute on Prevention of Handicaps. They emphasized that before giving audiences hopeful stories and useful strategies, it is essential to cover basic teratology. There are a significant number of women who are at moderate to high risk of drinking while pregnant, yet in Saskatchewan there are still two gynecologists who say it is okay to drink when pregnant. If someone is in denial about their drinking, then to give her contradictory or ambiguous messages are counter productive. Information about the risks must be direct and unequivocal. Less is better, none is best. The Saskatchewan group have developed a very good, inexpensive set of presentation/education materials on FASD in either power point or overhead format, see www.preventioninsitute.sk.ca for details.
Another presentation I attended described the out-reach mentorship program for mothers at risk that has been operating for three years in Alberta. They have hired and trained 13 workers who support 12-15 at risk birth moms. They make a three-year commitment and follow a harm reduction strategy. They calculate that it costs about $14/day for each birth mom they support (vs $320/day in Ontario to incarcerate a young offender.)
Senator Ione Christensen pledged to all the delegates at the end of the conference that she would make the cause of FASD her priority in the eight years that remain of her term of in the Canadian Senate. She invited us to contact her at chrisi@sen.parl.gc.ca any time with ideas and issues about FASD.
Those who work closely with and/or are caregivers to someone with FASD know that we must interpret the world to them and vice versa. There is a Hopi Prophesy which says that in coming together to help make the world a better place (interpreting) for those with FASD, the world itself will be healed. Five hundred twenty five people gathered in Whitehorse is indicative of this coming together. I would encourage you to attend the conference to be held next year in Winnipeg to be a part of the healing.
By David Gerry