THE PROMISE OF HOPE
These children can never be free of fetal alcohol syndrome but a unique approach to education may make life better, Margaret Philp reports from Winnipeg. Oh the horizon: diagnosis at birth
by MARGARET PHILP
The Globe and MailSaturday, November 11, 2000
Christopher Rudolph hunches over his desk, a yellow pencil crayon gripped in his small, bony hand. His face, inches away from the picture he is colouring, is fixed in a stare of pure concentration, but only momentarily.
At 11 years old, he is a wisp of a boy, with a pale, sweet face that relaxes in a slack-jaw expression, a razor-thin upper lip and wide-set eyes -- telltale features of a child with fetal alcohol syndrome.
Christopher sits in the front row of a very new classroom in dirt-poor north-end Winnipeg that is tailor-made for children with FAS, the world's biggest preventable cause of mental retardation. There is nothing else quite like this classroom on the planet.
It is extraordinary for its blandness. All the rules around early-childhood education -- the bright colours and images that feed growing brains -- are turned upside down. For children with FAS -- so hypersensitive that some wear their socks inside out so the seam won't chafe their skin -- everything can be a distraction.
The duller the surroundings, the better. The walls have been whitewashed and the blinds are pulled down tight to blot out the noisy distractions of recess-bound children. A bed sheet covers the bookshelves. No colourful works of child art are splashed across the walls. A couch sits in the corner with its back to the class, a refuge for children to lie down and tune out.
Three years ago, when Christopher was diagnosed with FAS, the scrambled pieces of his life fell into line: the bubbling affection that could snap without warning into blind fury, his wont for sexually fondling other children as a preschooler, the not-quite-right look of his face.
"He's more or less taken after me," says his mother, Karen, her words slow and deliberate. "I got tested, and mental retardation is what I have. They say I have that through my mother."
As surely as the doctors declared her son to be brain-damaged by alcohol, Ms. Rudolph is convinced that her faltering intelligence and scarecrow-thin body were preordained in her mother's womb by the bottle.
In school, she was dumped into the class for slow learners. She skipped every day and dropped out in Grade 5. She was smoking before her teenaged years and started binge drinking a few years later. And always she ran with the wrong crowd.
Pregnant with Christopher when she was 20, she lacked the will to stop drinking. "One doctor told me I could drink beer. Another told me 'no.' You get confused by it. Who can you trust?" she says.
"I was kind of blaming myself for it. But I'm over that now."
Christopher's classroom at David Livingstone Community School opened its doors at the start of the school year as the latest front in Manitoba's battle with a devastating social problem largely ignored east of the province's boundary with Ontario.
About one in every 500 babies born in Canada is thought to suffer from FAS, but there are pockets of the country -- destitute inner-city neighbourhoods and remote alcohol-plagued native reserves -- where estimates peg the incidence at nearly one in five.
Few are ever diagnosed. And for every child who is diagnosed with FAS, there are at least another four whose brain damage in the womb qualifies as the less obvious but more insidious fetal alcohol effects.
These lesser cases are notoriously tricky for doctors to diagnose. But researchers at the Hospital for Sick Children in Toronto are close to a breakthrough: a test of meconium, the tar-like substance that is the baby's first bowel movement, that would determine the level of alcohol absorbed by the fetus and eliminate much of the guesswork.
Whatever the diagnosis, these are babies who tend to grow up undersized, with below-average IQs and a startling inability to understand the consequences of their actions. Their faces will sometimes show the curious, almost elfin trademark of FAS: a small, upturned nose, a flat mid-face, a thin upper lip, a philtrim (the space between the mouth and nose) without ridges, small eye openings, ears turned on a slight angle.
And odds are that they will blunder through life branded as losers, dropping out of school, hitting the streets, indulging in inappropriate sexual behaviour, stumbling in and out of jail.
In Manitoba, the drain on the public purse over the lifetime of every baby born with FAS is estimated to be $1.5-million for everything from remedial learning to the cost of imprisonment.
It need not be so. Research shows that children with FAS can essentially be inoculated against the social dangers that lie in wait, that being diagnosed at an early age, raised in a stable and nurturing home and protected from violence go great distances to reversing their fortunes.
And what would be the implications for Canadian society, what unknown number of murderers and small-time crooks were irreparably harmed by alcohol before they drew their first breath? The prospects are profound.
But only in Western Canada are the possibilities sinking in.
"The West clearly acknowledged it earlier and moved political power earlier to see it in the eyes that it should be seen -- as a national tragedy and disaster," says Gideon Koren, a pediatrician and toxicologist who heads the Motherisk program at Toronto's Hospital for Sick Children. "But somehow it stops at the border of Manitoba."
At David Livingstone, the classrooms are brimming with native children, with just a smattering of white faces. While FAS is not only an aboriginal issue, it is a problem linked to poverty that in cities like Winnipeg marks natives in disproportionate numbers.
About one in three children attending this 78-year-old school suffer damage to their central nervous systems from alcohol exposure in the womb.
"We have very low incomes, single parents, violence and abuse in the home, prostitution, drugs, gangs," principal Angeline Ramkissoon says. "You name it, we've got it."
Ms. Ramkissoon is a pioneer in the FAS epidemic, one of a handful of professionals in the world who are putting into practice the emerging science around alcohol exposure in the womb.
When she arrived at the school seven years ago, no one talked about FAS outside U.S. medical research laboratories. But it soon struck her that there were some rowdy, troublemaking kids whose minds appeared to tick differently from those of the other students assigned to the class for behavioural problems.
"We knew they didn't belong in the special classes," she says. "But for lack of supports, we needed to put them in there."
With funding from the school board and the province, she started a small class four years ago for children in kindergarten to Grade 2 diagnosed with alcohol-related birth defects.
This year, Christopher's classroom was started for children in Grades 3 to 6. No more than eight pupils are taught by a teacher and at least one assistant. And the curriculum is suited to children whose IQs and academic prospects fall far short of their counterparts' in other classrooms. It includes basic life skills such as baking and personal grooming.
The girl in the seat behind Christopher attended a regular Grade 5 class last year and was known for a temper that would erupt in a flash, with her toppling desks and attacking classmates. This year, her most serious infraction has been a bout of name calling at her teachers.
"I called her foster mom and we sent her home," says her teacher, Jim Hadaller. "And she wants to be here. Now she knows, if she screws up again, the same thing is going to happen."
The gist of the FAS classroom is that the longer these children remain in school and the more they are taught by devoted teachers who understand the idiosyncrasies of their syndrome, the less chance they will fall under the sway of gangs, drugs and street life as impressionable young dropouts.
In the kindergarten class, big grey squares and circles are painted on the floor to mark boundaries where the children stand to leave and where they play.
In one corner is the "bunnyhole," a miniature, carpet-covered house full of pillows that works as a cozy retreat to calm children whose minds and bodies can switch into hyperdrive in the blink of an eye.
Beneath a doctor's costume, a tiny five-year-old girl in glasses is wearing a weighted vest that looks like the lead apron worn in the dentist's chair for an X-ray. Prone to misplaced bursts of affection, hurling herself at strangers for hugs and kisses, the weight of the vest is a sobering influence that gives her a sense of place in the classroom.
More like a three-year-old in her size, speech and development -- she still has no dominant hand -- the girl sidles up to teacher Susan Bryant, who is crouched close to the floor, and holds her face centimetres away.
Ms. Bryant looks her squarely in the eye. "If you want to give me a hug, you have to ask first," she says.
"Can I give you a hug, Susan?" the child asks in her breathy little-girl voice before throwing her arms around her teacher's neck.
Ms. Bryant follows routines and repetition. She is always talking to the children, but couches her messages in as few and as simple words as possible. When they become hyperactive, she explains to the children that their hearts are like a revving car engine. When they interrupt, their words are bumping.
Lessons that would last 45 minutes in the regular kindergarten class next door end after 15 minutes, the blackboard again covered with a sheet.
"The kids' attention spans are so short," Ms. Bryant says, "that we have to modify the length of time they're sitting. Anything after 15 minutes, they can't retain it."
Children with FAS are sometimes described as having Swiss-cheese brains -- some messages stick, while others slip through the holes. And the truth is the brains of alcohol-damaged children are physically altered: They tend to be abnormally small and smooth.
Like thalidomide, alcohol is a teratogen drug -- Latin for making monsters -- that flows from mother to child through the placenta and is far more catastrophic to the growing fetus than illicit drugs such as crack cocaine and heroin.
While alcohol is nothing new to humankind, the phenomenon of FAS was identified by U.S. medical researchers only in the 1970s. Since then, crusading parents who adopted seemingly normal babies who grew into troubled children have raised what little consciousness we have.
Foster homes and adoption registries across Canada are filled with FAS children seized from mothers caught in an impossible spiral of poverty, failing health, and alcohol and drug addiction that, chances are, will kill them before their 45th birthday.
More often than not, the children bounce unwanted from foster home to foster home before landing on the street, becoming addicted to drugs and booze and giving birth to children they are ill suited to raise.
A study published a few years ago by some of the University of Washington researchers who identified FAS, led by psychologist Ann Streissguth, found that of 473 people diagnosed with FAS or FAE:
60 per cent of those 12 and older had dropped out of school, and an equal number had run into trouble with the law.
50 per cent of those 12 and older had indulged in inappropriate sexual behaviour -- promiscuity most common for women, unwelcome fondling for men.
50 per cent had been institutionalized, either in jail or in a mental or detox facility.
72 per cent had been victims of sexual or physical violence.
What the researchers discovered next are the sort of hopeful findings that are propelling provinces such as Manitoba and British Columbia to fund programs for children with FAS: The chances of a fetal-alcohol child becoming another hard-luck story dropped for those who were raised in loving homes, free of violence, were spared being uprooted year after year and received some disability services.
Being diagnosed young -- before the age of 6 -- made a particular difference. And yet just 11 per cent of those studied had been diagnosed by that age.
"What we know is that early diagnosis may mean a better prognosis, because it means we can put some interventions in place early on," says Julianne Conry, a psychologist at the University of British Columbia who assesses children for FAS.
"If we put in good interventions early, we're not changing the fact they have brain damage. Brain damage is permanent. But we can prevent some of the frustration and acting-out behaviour that makes people with FAS more susceptible to problems later on."
In her own study of 287 young people sent to Burnaby's Youth Court Services for psychological assessment before sentencing, Dr. Conry found that one in four suffered from fetal-alcohol damage, but almost none from a full-blown case of FAS. Other studies show the percentage of kids in corrections with FAE to be even higher.
"People with FAE are less likely to obtain a diagnosis and recognition because they don't always show the features that would make people aware that it's a possibility," Dr. Conry says.
Diagnosis is a ticklish science. For FAS, proof must exist that the mother drank during her pregnancy. But shame and guilt for a woman whose addiction has inflicted lifelong damage on her baby is massive, and few will admit to it.
Never mind that just a handful of Canadian hospitals run clinics for assessing children for FAS, and each diagnosis involves a complicated, day-long process that includes testing by a specially trained pediatrician and a psychologist.
For example, the prestigious Hospital for Sick Children houses Ontario's only assessment clinic and tests fewer than 40 children a year. The waiting list stands at about six months.
"We do about one kid a week," Dr. Koren says, "but we should be doing at least five times that."
In Manitoba, roving teams of doctors fly into remote native reserves to assess children suspected of having FAS. More recently, specialists at Winnipeg's Children's Hospital have started to assess children hundreds of kilometres away through a remote audio-visual hook-up that frees the families from a costly flight to the big city.
At the Jack River School in Norway House, a sprawling Cree reserve of 6,000 just north of Lake Winnipeg, no classroom is without a child who is diagnosed with FAS or who vice-principal Daisy Monias at least suspects should be.
There are more teaching assistants assigned by the local school board to provide one-on-one attention for children with a diagnosis than there are classrooms.
Ms. Monias was born and raised in Norway House. In those days, it was a hard-working reserve that survived on fishing and logging, and no one was on the dole. But like on other isolated reserves, times have changed. Most of the jobs are found in the band office and at least three-quarters of the community collects welfare in the winter months when the lake freezes over.
For much of Ms. Monias's life, Norway House has tried to tackle its drinking problems by declaring itself a dry reserve.
But there is no clear boundary between the reserve and the neighbouring town of Rossville. And the road that leads from the tiny airport to the reserve winds by a liquor store and a tavern.
Across from the liquor store, in a clearing in the woods the locals call "the trapline," there is a sorry spectacle: Residents sit for hours, getting drunk and making a mockery of the reserve's dry status.
"They'll be there all night," says Vic Thordarson, superintendent of the Frontier School Division in Norway House.
Studies show that northern aboriginal communities have an incidence of FAS at least 50 times the estimated the national average. But Norway House is coming to grips with its problem.
Sitting around a table at Mr. Thordarson's office, the reserve's FAS committee -- a few teachers, social workers, Ms. Monias, a police officer from the local RCMP detachment -- discuss what to do next.
Already the reserve has mounted a public education campaign in its schools, with children drawing posters warning about the dangers of drinking while pregnant for a contest. The winning entries will be turned into place mats at the local restaurant.
Several weeks ago, it played host to a conference that drew more than 500 people from around Western and Northern Canada.
Volunteers visit new mothers, and the reserve's three schools are pushing to have students assessed and are tailoring a curriculum to help those with FAS remain in the regular classroom.
But everyone agrees that it is a drop in the bucket. People with FAS are being recycled through the criminal-justice system. Pregnant women are drinking, wanting nothing to do with Norway House's two public-health nurses. And plenty of kids are struggling without a diagnosis.
Yet FAS is not simply an aboriginal issue. Women from all rungs of society who drink while pregnant are at risk, but poverty is the biggest common factor, and in Western cities such as Winnipeg, native people are the most visibly poor.
At the Children's Aid Society of Toronto, about a third of all children placed for adoption were exposed to alcohol or cocaine in the womb. Of the 22 children currently waiting for adoptive homes, seven are thought to have been harmed by booze or crack, and one of them is native. Last year, of the 109 children placed for adoption, 35 showed signs of fetal alcohol damage, including all seven who were native.
In fact, Ontario has as many poor, alcoholic women as any Western province, but its government is doing little about the problem.
Apart from the assessment clinic, the province's only FAS service is a toll-free hot line for pregnant women with alcohol and drug questions that is funded entirely by the Brewers' Association of Canada and run out of the Hospital for Sick Children.
"There's no question FAS is as common here," Dr. Koren says. "But it's very typical in medicine that people don't find what they're not looking for."
It is the same story in Quebec, where attitudes toward drinking are far more liberal. An Environics Research Group Ltd. report for Health Canada shows that nationally seven women in 10 have heard of FAS, but in Quebec the figure is only three.
What can a pregnant woman drink safely? After all, research shows that only babies born to alcoholics and binge drinkers are at risk: 10 in every 100 will have FAS, 10 to 30 will suffer FAE and the rest will be normal. It would appear that the impact of alcohol on a growing fetus comes down to an accident of genetics and timing.
While some doctors say the occasional drink will do no harm, others maintain that no alcohol is safe.
So what of the poor, alcoholic mothers? For all the research on changing the prognosis for children damaged in the womb, harder still is the prospect of nipping FAS in the bud, reaching pregnant alcoholic women before they unintentionally inflict neurological and bodily harm on their unborn babies.
On the streets of Winnipeg, Cathe Umlah is a foot soldier in the battle against FAS.
On a blustery morning last February, she sat across the table from a first-time mother, both sipping a cup of coffee as social workers whisked away the woman's three-day-old son from the hospital maternity ward.
The woman -- call her Lucy -- is an alcoholic, hooked on the bottle since she was nine years old and living on a reserve north of Winnipeg. She drank in the final months of her pregnancy and when she gave birth at the hospital her baby suffered tremors from alcohol withdrawal.
Ms. Umlah is Lucy's mentor, one of a handful of women who have struggled with their own addictions and work for a Manitoba program known as Stop FAS that pairs mentors with 67 inner-city women who are pregnant or no more than two months postpartum and have a long-term addiction to alcohol and drugs.
The average mother is 27, already has four children (usually in foster homes), has five outstanding legal issues, has done time in jail, has been addicted to crack cocaine for at least eight years, suffers from health problems that often go untreated, has a history of physical and sexual abuse, collects welfare and almost always has, and when she earns her own income, does so illicitly. Hopeless cases all.
The program turns on the belief that, if ever there is a time for such rough women to go straight, pregnancy is it. "It's worth investing, even though the situation is hopeless," Ms. Umlah says. "It may be the one that turns around. I never forget that."
The mentors will stick with the women for three years -- through alcohol binges, bouts of verbal abuse, weeks when they disappear underground -- as a friend who has also fought addiction and someone who can navigate a confusing and detested child-welfare bureaucracy.
After Lucy's son was taken, she launched into a six-week binge of drugs and booze that ended only when the sober thought grabbed hold that her son would never be returned unless she broke her addiction. "I was seeing him once a week," she says. "I'd see him for an hour. That was the only time I'd straighten out, for one hour to see him."
With Ms. Umlah's help, Lucy entered a six-week addiction-treatment program and after that, started attending regular Alcoholics Anonymous meetings. And in July, five months after she lost her baby, he was joyfully returned.
Of course, Lucy's not completely out of the woods. "I have no desire for booze at all, but it's the drugs that enter my mind when I'm having a rough time."
Back in Christopher's classroom at David Livingstone Community School, Karen Rudolph is clutching the manuscript for a book she started to write three years ago when her son was diagnosed with FAS.
It is a primer on the syndrome, a compilation of facts and advice on raising an FAS child from the studies and articles she has pored over.
She writes about the twists and turns of raising Christopher, her words poignant and wise for someone wearing the label of mentally retarded.
"He is very friendly, nice, kind, sometimes he can be very mean," she says. "People do not understand what we go through every day. You have to live with a child that has fetal alcohol syndrome to understand what they go through in their lives."
Despite Christopher's relatively early diagnosis and the fact that he sits in one of the few classrooms in the world designed for children with FAS, Ms. Rudolph knows that nothing will reverse the damage done.
"He is going to have this for the rest of his life. He can't change it. You can't change it. You can help him."