Fetal Alcohol Sprectrum Disorder (FASD) is preventable when people care
The Toronto Star's Atkinson series provides another essay by Marie Wadden on an important issue facing our society where alcohol consumption (like smoking cirgarettes) seems to be an honoured right for young people (or so the corporations tell us in their ads) ... Fetal Alcohol Sprectrum Disorder or FASD.
Troubled before they were born - Mothers' alcohol abuse leaves scars
Aboriginal kids face consequences - Nov. 20, 2006 - MARIE WADDEN - ATKINSON FELLOW
An impish Innu boy named J.B. Rich from an impoverished Labrador community might not appear to have much in common with the son of a former Canadian prime minister.
What Rich and Michel Chrétien share is the tragedy that befell them before they were born, ultimately leading to the destruction of one and the survival of the other.
Both came into the world — Michel in 1968 and Rich in 1989 — with a preventable brain disorder that has left a swath of destruction in its wake, particularly in the Aboriginal community. It occurred when alcohol their mothers drank seeped into the placenta and was absorbed by their developing brains, causing them to develop fetal alcohol spectrum disorder, or FASD.
The Canadian Pediatric Society says individuals with FASD have poor organizational skills, make poor choices and are unable to foresee the consequences of their actions. They are also impulsive, show inappropriate behaviour because they can't read social cues, are excessively friendly and lack inhibition. This makes them very difficult to parent.
Rich's brain damage caused him to repeatedly get in trouble with the law until he ended his own life. Michel Chrétien also got into a lot of trouble, but he sobered up, thanks to considerable financial and emotional support from his parents.
People with FASD have precarious lives that could turn from bad to worse on a dime. It's estimated that nine in 1,000 babies in Canada have FASD; it is believed to be much higher in many Aboriginal areas.
The extent of the problem has prompted some experts to fear for the cultural survival of some Aboriginal communities.
"If we don't act now we will end up with a lot of very dysfunctional individuals making decisions for their community, and because they are the majority, then things will really become very bleak for the community itself," says Dr. Ted Rosales, a pediatric geneticist who was one of the first Canadian specialists to take on the FASD challenge.
He first saw FASD in a non-Aboriginal community in Newfoundland 27 years ago. "I went into a delivery room in Grand Falls," he recalls, "and the smell of alcohol was so powerful you'd think it was a brewery. The baby had been soaking in alcohol throughout the pregnancy."
By the time that child and several of his brothers were teenagers they wound up in jail. Rosales learned a lot more about the condition, but his message of alcohol abstinence during pregnancy was rarely taken seriously.
Not very much was known about FASD in 1971 when Aline and Jean Chrétien adopted their son Michel from an orphanage in the Northwest Territories.
In fact, the term "fetal alcohol syndrome" was only coined two years later by researchers in Seattle who wrote up their findings in the medical journal, Lancet.
The antics of a 20-month-old-boy, playing in an Inuvik orphanage crib, caught the attention of Aline and her husband, who was then minister of Indian and northern affairs. They adopted the lively toddler who grew up beside their daughter France and son Hubert.
"Michel was beautiful," Aline Chrétien recalled as she spoke to me at an Ottawa reception in April. "We fell in love with him."
Michel Chrétien's birth mother, a Tetlit Gwich'in woman from Fort MacPherson, grew up in extreme poverty with 12 siblings. She was unaware of the consequences of drinking alcohol during pregnancy.
A recent study of Aboriginal health in Quebec suggests the awareness level is still low for young Aboriginal women. Aboriginal girls in that province, between the ages of 15-17, drink significantly more than boys of the same age and 62 per cent are sexually active.
There is little or no information in many Aboriginal high schools on birth control and FASD. Posters about the problem are usually in English, the second language of many First Nations and Inuit people.
Rosales saw first-hand the extent of the FASD problem in Aboriginal communities in 2001.
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`Aline and I have suffered when our son has suffered'
Jean Chrétien, former prime minister
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That's when 40 Labrador Innu children were evacuated to St. John's, Nfld., for routinely inhaling gas fumes from plastic bags. Rosales was asked to examine them. They were closely supervised for four months in Grace Hospital, which became a laboratory for one of the most heart-rending experiments in Canadian history.
"We did the best ever in terms of laboratory evaluation. We did all kinds of blood works, chromosome studies and cranial ultrasound, even MRI on some of them," Rosales says. "We concluded that 29 of these 40 children have FASD."
The children called the kindly doctor, who is a native of the Philippines, "Dr. Miyagi" (after a character in the Karate Kid movies) as he made his daily rounds in the locked-down facility. The situation was chaotic because, Rosales says, it's not a good idea to confine so many children with FASD in a single space.
Rosales says the ringleader of widespread mischief at the hospital was J.B. Rich, then 12 years old.
"He was the first one brave enough to call me Dr. Miyagi to my face," Rosales remembers with a smile. "You know, whatever came to his mind, he'd say. And if he thought of doing something, he went ahead and did it. He was always in the middle of trouble."
Michel Chrétien got into a lot of trouble too. He was convicted of impaired driving in Banff, Alta., in 1988 when he was 19.
"Poor Michel," his mother says. "He has an uncle who died from the disease of alcoholism. It's a real problem for him."
Two years later, he was charged with sexually assaulting a young woman in Montreal. His biological mother attended the trial with the Chrétiens.
Michel Chrétien spent two years in a maximum-security prison in Quebec and one year at a minimum-security prison in the Northwest Territories. When he was released, he rented a room in his birth mother's apartment in Yellowknife. After three years, that situation deteriorated and his birth mother accused the Chrétiens of being too indulgent with their adopted son.
Michel lived for a time in Regina where he was put on probation for throwing something at a child who upset him.
Bonnie Buxton, author of Damaged Angels: A Mother Discovers the Terrible Cost of Alcohol in Pregnancy, says addiction affects a majority of individuals with FASD. Nearly 60 per cent have trouble with the law; 80 per cent have trouble finding work and living independently while 95 per cent suffer a mental-health disorder.
In 2002, Michel Chrétien was exonerated on another sexual assault charge, but acknowledged his problems with drugs and alcohol in court. His father made a public statement.
"Aline and I have suffered when our son has suffered and have been deeply concerned by any harm that may have come to others as a result of his conduct. We are deeply discouraged by his apparent relapse. We have offered all of our care and support to him in good times and bad, and we will continue to stand with him."
In April, when I spoke to Aline Chrétien, Michel was living in a supportive Aboriginal community in Minnesota where he seems to have found the stability he needs to cope with his life-long disability.
"Jean, he loves that boy and says if we hadn't adopted him he'd probably be dead by now," his mother says. "Michel has been sober for six months and we are just hoping it will last."
J.B. Rich had not been as lucky.
After examining the Innu children, Rosales wrote a report recommending continuing care for those affected by FASD. Instead, he says, they were sent home after some counselling and solvent-abuse therapy.
Rosales next saw J.B. Rich four years later in a courtroom in Goose Bay, Labrador. The doctor sat there and listened to the litany of petty crimes the boy committed throughout his teens. He learned that Rich was in and out of the Goose Bay Correctional Centre, that his life was going nowhere. When it came time to take the witness stand in Rich's defence, Rosales lashed out at the officials who let this happen.
"If they had done what I had suggested, if he'd been given the community resources I said he'd need, this wouldn't have happened. I spelled it out. My recommendation was that all these children need ongoing lifelong resources and support. But my report never got any attention from the provincial, federal governments and local community. It (the treatment and testing) cost $6.5 million to do this and it was shelved."
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`My recommendation was that all these children need ongoing lifelong resources and support'
Dr. Ted Rosales, a pediatric geneticist
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It's not the waste of money that concerns Rosales. It's the waste of lives.
After testifying that day, Rosales spent some time with Rich.
"I asked how he was and whether he had a girlfriend and so forth," Rosales remembers. "He wasn't the same, not talkative at all. He was so changed. And I was really puzzled by that. Looking back, I think that it was dawning on him. Everything that was going wrong, and why."
The judge sentenced Rich to 40 days of community service. Several weeks after the trial, J.B. hanged himself. He was 17.
"A few weeks later his brother Charlie did the same," Rosales says. "Charlie also had FASD. I should have done more."
Both young men are buried now beside one another at the graveyard in Natuashish with identical wooden crosses decorated with plastic flowers, rosary beads and their baseball caps.
"I almost gave up doing diagnosis for the courts," the doctor says. "What's the point of having people like J.B. hear they have FASD if they are not going to get services to help them? But I have to keep diagnosing and talking about it because I want the children with FASD helped and I want mothers helped so they will stop drinking."
He thinks the best way to halt the spread of this condition is to raise the standard of living in Aboriginal communities and launch a public health campaign promoting alcohol abstinence on the scale of tobacco cessation programs in the south.
"From a public health point of view, that's the only program I know that will work," Rosales says. "Unless things are changed now, I think their very existence as a culture, as a very unique group of individuals, is really at stake."
Rosales spends some of his free time poring over portraits of Aboriginal people in museums and history books, looking for evidence of FASD in their past. He can't find it.
He looks closely at the space between the eyes; the upper lip and nose. People brain-damaged by intrauterine exposure to alcohol have characteristic facial conditions that Rosales can't find in the pictures he has examined.
He has concluded that prior to the 1950s the condition, if it existed, was indiscernible in Aboriginal societies.
"I've never seen an FASD face in the old pictures," he says of his informal historical research. "I'm certain it wasn't a problem for Aboriginal people in the past."
Rosales fears the very survival of Aboriginal cultures is threatened if the condition is not prevented. "If alcohol use during pregnancy is not stopped, the next generation will not have the brain capacity to appreciate their own culture as something they should be proud of," he says.
What's needed for those with FASD now, Rosales says, are individuals who can act as "second brains," helping loved ones and friends make better decisions.
In Sheshatshiu, an Innu nurse named Mary Pia Benuen does that for children affected with the condition. She keeps track of their progress in school, advocates for services and runs prevention programs. There isn't enough money in Aboriginal health budgets to ensure the same services are available everywhere they're needed.
Aline Chrétien is one of her son's "second brains."
"I bought Michel a computer recently," she says, "because he needed one. But I won't give him money in case he doesn't use it wisely. Jean and I talk to him a lot on the telephone. We love him very much."
Rosales has been so deeply affected by his work in Labrador he has postponed his retirement. In one community, he estimates as many as 35 per cent of the people have FASD — close to what he sees as a tipping point for cultural destruction in another generation or two. Michael Miltenberger, the minister of health for the Northwest Territories, says he believes FASD is just as widespread in Aboriginal communities there as well.
"You see how they have existed for a thousand and some years and then in a short period of time, 50 to 60 years, their whole culture and unique ways of life might go down the drain if this is not stopped," warns Rosales.