When Janet Christie was pregnant with her first child, she was an alcoholic.
When waves of morning sickness hit, she was reaching for a drink.
And the more Christie tried to stop, the stronger the compulsion to drink became.
“At the time, quitting breathing seemed easier than quitting drinking,” said Christie, who lives in Sooke, B.C.
It was the late ‘70s and there wasn’t much talk about the dangers of drinking while pregnant.
But deep down she knew that her drinking couldn’t have been good for her son.
When he was born, she counted 10 fingers and 10 toes. She thought her baby was OK.
Then her son failed Grade 1. That’s when she started researching the effects of drinking during pregnancy.
An agency in the U.S. sent her an information booklet about fetal alcohol spectrum disorder. It outlined the behavioural and learning disabilities associated with FASD.
“I read down this checklist they sent me and was like, ‘Oh my god – there’s no doubt in my mind that that’s what he has,’” she said.
Christie shut the book and didn’t think about it again. It was too overwhelming.
But as her son got older, he started getting into a lot of trouble. “It was a nightmare,” said Christie, who was a single mother at the time.
He got kicked out of every mainstream high school in Victoria.
It was only when her son was 16 – and Christie was three years sober – that she started phoning agencies in B.C. looking for help for her son.
That’s when she got her first shaming.
“I would say I was the birth mom and I could just feel the rejection through the phone,” said Christie.
One woman flat out told her, ‘You caused it, you deal with it,’ and hung up.
That was the early ‘90s.
And yet attitudes around women who drink during pregnancy haven’t changed much since then, said Christie.
She now works with women in Victoria who are at risk of giving birth to children with FASD or have already done so.
“I attended alcohol recovery meetings for 20 years and nobody talks about drinking during pregnancy,” said Christie. “There’s so much shame and stigma attached to it.”
So Christie developed a support group where women could openly talk about the struggles of being a mother and being addicted to alcohol.
It was loosely modelled after a mentorship program in Seattle that matches at-risk women with a mentor for three years.
One third of the Seattle women come out of that program sober. And there’s a 67 per cent drop in the number of babies born with alcohol and drug exposures, according to researchers Therese Grant and Cara Ernst, who studied the program.
Christie found similarly encouraging results with her Moms Mentoring Moms program.
Women started finding housing and accessing treatment. And some women got their children back from government care.
“It was a phenomenal experience to watch these women grow and get better and become empowered,” said Christie.
The program was a success, according to University of Victoria professor Blythe Shepard, who evaluated the program in 2008.
But the government didn’t renew the $80,000 program for a second year.
Women who have addictions are isolated. They don’t fit into mainstream programs, said Christie.
“I don’t know why the government doesn’t recognize (this program) as a need,” she said.
The Public Health Agency of Canada has estimated the lifetime cost of caring for an individual with FASD to be as much as $1.5 million.
Across Canada, yearly costs have been pegged at $5.3 billion.
People with FASD require more visits to the doctor. Eighty per cent of them need assisted support in living. And many wind up in Canada’s justice system.
Spending money on prevention programs makes economic sense. And yet there aren’t enough of these programs in Canada, said Yukon-born FASD prevention worker Marilyn Van Bibber.
B.C. and the Yukon are often considered leaders in the country for addressing issues of FASD.
But Van Bibber believes the territory could be doing a lot more than it is.
She’d like to see a mother mentorship program in the Yukon.
“If we’re looking at preventing fetal alcohol we need to look at the whole picture,” said Van Bibber, who has worked as a nurse and midwife in the North.
A prevention program needs to address much more than just drinking. It needs to look at issues of poverty, employment and housing, she said. And in the Yukon, it needs to address generations of trauma caused to First Nation people by colonization and the residential school system.
The non-profit agency, the Fetal Alcohol Spectrum Society of the Yukon, only has $60,000 a year to spend on prevention.
It focuses on school-age prevention programs and educating professionals about FASD.
It doesn’t offer any sort of mentorship programming for at-risk women.
The territory’s alcohol detox facility doesn’t have specialized programming either.
Although it will put pregnant women at the top of its waiting list, according to its website, women can only be admitted to the program every second month of the year.
The Yukon government won’t say how much it spends on prevention efforts for FASD.
It does workshops in all of the communities and produces FASD prevention posters and pamphlets.
But it doesn’t offer anything as intensive as a mentorship program.
“Prevention is very complex,” said Van Bibber.
“There’s much to be addressed when we say this condition is 100 per cent preventable.”
What is often overlooked is why these mothers are drinking while pregnant.
World-renowned researcher Sterling Clarren decided to look at that question 12 years ago.
What he found was startling.
About half of the 80 mothers his team looked at had FASD themselves.
Many of them had suffered extremely high rates of physical and sexual abuse. They often had mental illnesses and were isolated from friends and families.
“The stories these women told the interviewers were so awful that the interviewers needed psychiatric support at the end of the study for secondary post-traumatic stress,” said Clarren.
Clarren champions mothering mentorship programs.
“If you simply provide these women with support and help, there’s a very high rate of their request for birth control and alcohol treatment,” he said.
Not all women who have children with FASD are poor, however.
There’s plenty of middle and upper-class women giving birth to children with this disorder.
Christie was one of them.
People don’t often hear about these women because they don’t talk about it, she said. They’re not the ones who are getting their children apprehended at the hospital.
These are women who often know the dangers of drinking but can’t stop. Or they’re drinking and don’t know they’re pregnant or think they’re not drinking enough to harm their baby.
“Science doesn’t pinpoint the exact amount of alcohol that a person needs to consume in order to create damage to a fetus,” said University of Victoria researcher Deborah Rutman.
That amount depends on how quickly a woman’s body metabolizes alcohol. Genetics and the size of a woman both play a factor.
And yet women still debate how much alcohol is safe to drink during pregnancy, said Rutman.
“At a point you need to let go of the science and focus on the public-health messaging, which is that no alcohol is best and that cutting back is ideal,” she said.
The most harmful time for a woman to drink during her pregnancy is in the first three months.
But many times women – particularly young women – don’t even know they’re pregnant then.
Society does a better job of linking the prevention of sexually transmitted diseases with partying than it does FASD, said Winnipeg researcher Anna Hanlin-Dearman.
“I don’t think young women are even thinking they can get pregnant, never mind the effects of alcohol on pregnancy,” she said.
The number of women in their child-bearing years who are drinking is increasing in Canada.
And they’re not just having a couple of drinks here and there. Many are binge drinking.
The number of binge drinking women in the Yukon jumped 150 per cent between 2005 and 2010, according to Statistics Canada.
Among Yukon women, 18 per cent reported drinking more than five drinks in one sitting at least once a month.
That’s second only to the Northwest Territories in the amount of binge-drinkers. And it’s almost twice the national average.
The Yukon doesn’t have an official count on the number of people who are born with FASD, but there have been some cursory studies.
One study done in 2000 by the Yukon’s medical officer of health counted 24 of the 378 babies born that year having FASD.
That’s about six times the national rate of one in 100 babies being born with FASD.
“This is an unbelievably immense issue,” said Judy Pakozdy, who founded FASSY in the mid-‘90s and now lives in Ontario.
She’s seen generations of families in the Yukon who all have FASD.
“The focus has to be on prevention but also on supporting the people out there (with FASD) so they don’t perpetuate the prenatal alcohol exposure to their children.”
FASD prevention is complex and needs to be targeted to many different groups of people for it to be effective.
Posters and stickers on bottles of alcohol are good as a deterrent to the general population.
But this kind of prevention doesn’t necessarily work with addicts.
One of the earlier prevention projects Christie worked on was creating literature and posters for at-risk women.
“We put up those posters and the women read those and said, ‘Oh my god, now I know that drinking during pregnancy can hurt my baby. I have that information and I can’t stop. I really am a loser,’” said Christie. “What do I do when I’m a loser? I drink.”
Society needs to stop judging these women, said Christie. What these women need is help, not judgement.
They know what they’ve done has hurt their child, she said.
Christie still tears up when she talks about how drinking affected her son.
“I don’t think the guilt of it ever goes away,” said Christie.
“Every time I see my son, he struggles. That’s with me every day.”
This is the fifth of a six-part series on fetal alcohol spectrum disorder in the Yukon. The writer received assistance from the Canadian Institutes of Health Research for this series.
* Value of alcohol sold in the Yukon in 2011: $31.9 million
* Money available to the Fetal Alcohol Spectrum Society of the Yukon for FASD prevention in 2011: $60,000
* Lifetime costs of caring for one individual with FASD in Canada: $1.5 million
* Percentage of Yukon women over the age of 12 who binge drank at least once a month in 2010: 17.8 per cent
* Percentage of women who have unplanned pregnancies in Canada: 40 per cent
(Statistics courtesy of the Yukon Liquor Corporation; FASSY; Canadian Journal of Clinical Pharmacology; Statistics Canada; University of Ottawa department of medicine)