FASD

Winnipeg Free Press - PRINT EDITION

When drink destroys: Fetal alcohol leaves nobody untouched

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Maybe you sat next to someone with it at the doctor's office.

Your daughter or son might have a classmate with it.

FASD....

...stunts individual brain cells and major parts of the brain, such as the main processing centre of the cerebellum and the corpus callosum, a thick band of fibres in the brain's core that connects the right and left hemispheres.

...affects more people than Down syndrome and autism combined; and costs Canadians at least $5.3 billion a year.

...is virtually invisible and mired in stigma. Diagnosis is tricky, services are spotty and schools, the courts, the job world are almost perfectly set up for people with FASD to fail.

...is widely seen as an "aboriginal problem." It is not. Alcohol-related birth defects affect every race and income level. In fact, experts say the group most at risk are students or professional women in their late 20s or early 30s who binge drink on the weekends and may not realize they are pregnant until the damage is done.

But several studies in the United States and on some Manitoba reserves suggest FASD rates are higher among aboriginal people. Poverty can be a factor in alcoholism, and there is some research, with conflicting conclusions, into whether indigenous people have some genes that alter the way alcohol is metabolized, leading to higher rates of abuse and binge drinking.

If you're a foster parent, odds are any child who walks through your door will have it.

It is fetal alcohol spectrum disorder, the umbrella term for the deluge of physical, cognitive and behavioural problems inflicted on a baby when a woman drinks when she is pregnant.

FASD is the leading cause of developmental disabilities in the developed world. It affects more people than Down syndrome and autism combined. In Manitoba alone, an estimated 11,000 people live with it, including 2,000 kids.

And those numbers are painfully conservative estimates.

Dr. Ab Chudley, Manitoba's top FASD doctor, calls the kids and adults who have been diagnosed with FASD just the "tip of the iceberg."

Chudley says for every child diagnosed, there are likely two or three more who were exposed to alcohol in utero and have symptoms of central nervous system damage.

The Manitoba government spends $11 million a year preventing and treating FASD.

That's peanuts compared to the millions spent coping with the mess FASD creates.

As much as 10 per cent of the $10.7-billion provincial budget goes to combating the spin-off effects of FASD -- the crime, the child-welfare cases, the schools struggling with learning disabilities and behaviour problems, the related health-care costs.

"It's an issue, and it's a long-term issue," acknowledged Healthy Living Minister Jim Rondeau. "It affects family services, justice, health, education. It affects everything."

The truth is, compared to most other provinces, Manitoba leads the pack when it comes to spending on FASD. The province has one of the best diagnostic centres in North America and a menu of new and innovative programs, such as a court project for young offenders with FASD and a new province-wide mentoring program for women at risk of drinking while pregnant.

But everyone agrees those programs catch only a tiny sliver of people with FASD.

Meanwhile, the human and financial costs of FASD are enormous.

FASD is virtually invisible and mired in stigma. If left untreated, FASD condemns people to a profoundly unhappy life of failure.

They struggle in school because most classrooms are perfectly set up to thwart kids who can't focus, process information or learn verbally. They get fired from jobs because they can't show up on time, keep tasks straight or get along with colleagues. Mental illness, such as depression, is common, and people with FASD are more likely to be addicts. A marginal life, or a life of crime, await many people with FASD.

"At one time I said we should be declaring war on FASD," said Chudley, a doctor, researcher and Manitoba's go-to FASD expert.

"It's really been half-hearted. People don't want to get into the trenches because it could get messy. There's risk of offending people, of stigmatizing people, there's risk of 'why are you putting money into that, what about these other diseases?'"

Sometimes, there's a sense that because FASD is entirely preventable, it's less worthy of investment of resources, that if women just took responsibility for themselves, the problem would solve itself.

But women -- young professional women out for martinis on a Friday night, for example -- may binge drink before they know they are pregnant, during the critical first trimester when the damage can be the worst. Or, chronic alcoholics drink to escape abuse, poverty and violence, making preventing FASD a particularly daunting task for policy experts.

FASD is not a uniquely aboriginal problem, although there is research suggesting a genetic predisposition to alcohol abuse and binge drinking. Rates of FASD are higher among aboriginal people, but some researchers say Caucasian women in their 30s may in fact be the most at-risk. There is also a suggestion that the risk of FASD increases with maternal age.

FASD is treatable, especially if children are assessed and diagnosed early in life. With the right help, most children born with alcohol-related birth defects can learn, hold jobs and, depending on their level of disability, live independently.

But there's a long line-up for diagnosis and services for people with FASD are spotty.

Services on First Nations, where the need is greater, are even spottier.

Health Canada would not provide any data about FASD rates or allow the Free Press to interview any staff knowledgeable about FASD, but First Nation chiefs say many reserves lack the basic tools to treat or combat FASD.

For the last several months, with the help of a $20,000 grant from the Canadian Institutes of Health Research, a team of Free Press reporters has combed research data, talked to experts at home and abroad and, most importantly, talked to people with FASD and their families.

Over the coming weeks, we'll look at how FASD reaches into to the criminal justice system, the school system and the child welfare system. We'll also look at the challenges of diagnosis, especially for adults, and lay out promising responses to the epidemic.

maryagnes.welch@freepress.mb.ca

carol.sanders@freepress.mb.ca

mia.rabson@@freepress.mb.ca

Republished from the Winnipeg Free Press print edition February 26, 2011 H1

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