Canadians unaware of FASD

Most Canadians are unaware of fetal alcohol's devastating effects

Citizen Special

Sunday, August 06, 2006

Although Fetal Alcohol Spectrum Disorder is highly preventable and costs Canadians nearly $350 million a year, most Canadians and many health professionals remain unaware of the devastating affects of drinking alcohol during pregnancy.

FASD is the single biggest cause of brain damage in most industrialized countries, affecting one to three out of every 100 births in Canada. Its consequences are far-reaching both emotionally and financially. It is estimated that it costs between $2 million to $3 million for each affected individual. This includes the medical care and services needed, and the costs involving conflicts with law and loss of productivity and employment.

Diana Fox, who was project co-ordinator for FASEout, a program within the Canadian Institute of Child Health targeted to heightening awareness and building community partnerships around FASD, points out that a high percentage of the homeless and at least 25 per cent of people who have problems with the law are FASD-affected. This information is only beginning to become a driver in planning policies for the homeless and the Canadian justice system.

"Research indicates that in FASD-affected children, the bridge between the two halves of the brain --the place believed to be the seat of morality and the ability to discern good and evil -- is often smaller than usual," states a report presented as evidence to the House of Commons Standing Committee on Health in 2005. "That part of the brain's tissue isn't properly or fully developed."

The report was part of a backgrounder for a bill before the health committee. Bill C-206 would have amended the Food and Drugs Act to require labels on alcoholic beverages warning, among other things, that alcohol cause birth defects if consumed during pregnancy.

But Bill C-206 died at the committee level on April 7, 2005, although it had been approved by 225 votes out of 252 at second reading in the House of Commons. Then-health minister Ujjal Dosanjh had also publicly expressed his support for labelling.

Ten members of the alcohol industry were a strong presence at a March 9, 2005 meeting of the committee. Representing a powerful group of Canadian distilleries and breweries, they argued that labelling would not work unless it was part of a larger, comprehensive strategy to combat FASD.

But when Health Canada's official strategy to prevent and help those affected by FASD came down the pike on June 2, 2005, it made no mention of the warning labelling. "The report was more a review of history rather than a forward-looking plan," says Liberal MP Paul Sabo, author of Bill C-206. Not satisfied with Health Canada's response, the Commons Standing Committee on Health is working on a new report.

Mr. Szabo calls the lack of public awareness about FASD "tragic." He says that even though he had three children, two university degrees, was a board director for his local hospital and very active in his community, he didn't know anything about FASD 10 years ago.

"How is that most people don't seem to be aware about something that is such an enormous health risk?" he asks. "FASD is brain damage and it's irreparable. At the least, it means a lifetime of incredible challenge. At the most, it means a lifetime of misery.

"If we were to think of the government as a lighthouse for consumer information, I'd say we are only getting tiny flashes of information as far as FASD is concerned."

Mr. Szabo thinks that one of the reasons his bill didn't pass is because of the substantial taxes the government collects on alcohol. At the time, the most recent Statistics Canada information reported that the alcoholic beverage industry across the board made a profit of $700 million. In terms of taxes on alcohol, the provinces and territories made $3.2 billion. Whatever the alcohol industry makes, the provinces and territories make four and a half times as much.

As Mr. Szabo points out: "Every time you take one dollar away from the alcohol industry, various levels of governments lose $4.50. That must certainly affect any incentive to change things." Mr. Szabo has continued his efforts around labelling. The bill is back -- now as Bill C-251 -- and is coming up for debate in November.

Alcohol contains ethanol, which destroys brain cells. Although the brain of an unborn child can be damaged by alcohol throughout pregnancy, the damage is more acute in the early stages because the fetal liver is not well developed. When a mother drinks, it takes four times longer for her unborn child to break down the ethanol than she does.

The organs and facial features of a human being are permanently set between days 15 and 22 -- a time when very few women know they are pregnant. Children whose facial features have been damaged during this pivotal time period usually have smaller heads, very thin upper lips, flattened cheekbones, small wide-set eyes and no groove between the upper lip and nose. This group is referred to as having Fetal Alcohol Syndrome (FAS).

FAS actually represents a small portion of the FASD population, says Elspeth Ross, co-ordinator of the Fetal Alcohol Spectrum Disorder Group of Ottawa. "In addition to the distinctive facial features, they are usually distinguished by small stature and behavioural and learning impairments."

Ironically, the FAS-affected are often more fortunate. They are more likely to get the support they need because their impairment is immediately obvious. The other larger population -- the Fetal Alcohol Effects group -- face much greater challenges getting the support they need.

"FAE-affected individuals have normal or above normal intelligence," explains Ms. Ross, "but they still can't function independently in life. They need lots of assistance just meeting the demands of everyday life. Because their disability isn't as obvious, doctors are reluctant to diagnose them -- and when they do, they often don't know where to send them for support."

Convincing pregnant women to abstain from alcohol is fraught with difficulties, says Diana Fox. "Since approximately 50 per cent of pregnancies are unplanned that would mean we would have to say to women: don't drink alcohol if you're childbearing age and sexually active. That's not realistic."

Women sometimes drink because they feel pressured to by their peers, adds Ms. Fox, or because not drinking while everyone else is makes them feel left out, she adds.

"It is unfortunate, too, that pregnancy can still handicap a woman's career. Sometimes a professional woman will drink, knowing she is pregnant, because she doesn't want her co-workers to know. She may be afraid of missing out on a promotion or other opportunities at work."

Ms. Fox also draws a direct connection between FASD and other social problems. "While we have women who are socio-economically disadvantaged, women with mental-health issues who are not being served adequately, or involved in abusive relationships, or addicted to alcohol, we will continue to have FASD-affected children born."

Ms. Fox points out a recent study that indicated by the time children are diagnosed with a FASD-related condition, their birth mothers are dead in one out of four cases. The deaths were attributed to suicide, disease, violence and misadventure. Another study indicated that 80 per cent of FASD-affected individuals are not raised by their biological mothers but rather by adoptive parents or through foster care. Many spend a large portion of their lives in group homes.

The importance of comprehensive and specific FASD training for professionals working in group homes was underlined in November 2002 by the slaying of Sharla Collier, a 20-year-old youth worker in Lethbridge, Alta. Ms. Collier had just graduated from a rehabilitative-studies program and was working weekends at the group home when she took a 14-year old resident out for a walk on her own in a nearby park. Ira Badger, an FASD-affected teenager, raped and beat her to death. Ms. Collier's parents have launched a $75,000 lawsuit against the Alberta government. They claim negligence in the care of Ira Badger and in the training of their daughter.

"Ira Badger became a ward of the state at the age of 2. By the time he was 11 months old, he had already lived in four foster homes. He was diagnosed with fetal alcohol syndrome at the age of 6," says Ms. Ross. "It is important to note that he was considered 'fit' for trial even though he is FASD-affected, his IQ is low, and his capacity for rational thinking and reasoning are very limited."

Mr. Badger pled guilty and on June 8, 2005, was convicted of first-degree murder in adult court and sentenced to seven years in prison.

For those families living with FASD, awareness and support seem to be coming at a snail's pace. There are a few successes, however. September has been designated FASD month and around the world at the ninth hour, on the ninth day of the ninth month, FASD Awareness Day brings together small groups of FASD-affected families, health-care professionals, the media and the general public. On Sept. 9, a group will gather at the Centennial Flame on Parliament Hill, and walk to Victoria Island for a barbecue and activities.

There are times when some momentum has been achieved and the financial support is lacking to push further forward. The three-year FASEout project ended March 31. "This has been an incredibly successful program," says Janice Sonnen, the executive director of the Canadian Institute of Child Health. "We have been bombarded with requests for more workshops and speakers. We desperately need programs to refer people to and experts to work with them.

The Institute is looking for other sources of funding but has nothing firm in place.

FOR FURTHER INFORMATION

-The FASD Group of Ottawa meets the first Tuesday of every month at the Children's Hospital of Eastern Ontario Research Institute, Room 154, 401 Smyth Rd. For info, call 613-737-1122 or 613-446-4144.

-Canadian Centre on Substance Abuse, Alcohol-Related Birth defects: www.ccsa.ca/toolkit/introduction.htm

-Health Canada website: www.niichro.com/fas/fas_13.html

-FAS Stars: www.come-over.to/fasstar

-Damaged Angels: A Mother Discovers the Terrible Cost of Alcohol in Pregnancy by Bonnie Buxton (Knopf ) www.damagedangels.com

Source: http://www.canada.com/ottawacitizen/news/story.html?id=43e9794c-8a84-4c27-8e45-50b197270ab7