Fetal alcohol syndrome, or FAS, affects all racial groups, but American Indians are hardest hit. Studies from the Center for Disease Control show the fetal alcohol rate among Indians is 30 times higher than whites. Health workers on Minnesota Indian reservations say fetal alcohol damage is a huge problem in some tribal communities. There's a growing effort to fight a problem that, for years, has been ignored or misunderstood.
Bemidji, Minn. — It's no secret that alcohol has had a devastating impact on American Indians.
But what many in Indian communities are less comfortable talking about is the damage caused when pregnant women drink alcohol. Some call fetal alcohol exposure the No. 1 problem in Indian Country. It's causing a literal brain drain in tribal communities.
"I would say it's very definitely a problem, almost pervasive," says Sandra Parsons, director of Family and Children's Services for the Red Lake Band of Ojibwe in northern Minnesota. "I haven't found anybody yet who disputes that. I think people would be literally amazed at how prevalent it might be."
A FAMILY TURNED UPSIDE DOWN
Parsons has worked with American Indian kids for years on three reservations. She says acknowledgement of the extent of fetal alcohol damage in tribal communities is scattershot, at best. Yet there are many families who know intimately how that damage can turn things upside down.
When Red Lake tribal member Sue Antone adopted three kids in the 1990s, she had no idea what she was getting into. The children were adopted from an Indian tribe in Arizona, where Antone lived for several years. Antone says her kids seem normal to most people, but they have problems.
Joshua, Matthew and Shyra all have the same biological mother, an alcoholic who's in an Arizona prison after being convicted of murder. Antone has had the kids since they were babies. She could tell early on there was something wrong. She says 11-year-old Matthew is especially difficult.
"I would be crying, because it was so hard," says Antone. "Having him in a room was like having 10 kids in that room, not just one. He never could sit still. He was very destructive, abusive, not only to his siblings, but to himself. I swear, I thought he could not feel pain."
Matthew was diagnosed with Attention Deficit Hyperactivity Disorder when he was 18 months old. That made it easier for Antone to get her son into a fetal alcohol diagnostic clinic at the University of Minnesota. At age 3, Matthew was diagnosed with fetal alcohol syndrome.
Antone believes her other two kids are also damaged by alcohol. Like Matthew, Joshua and Shyra have learning, behavior or health problems.
Antone wanted proof that alcohol could be the cause, so she wrote a bunch of letters to the children's imprisoned biological mother. Antone pleaded with the woman to admit she drank while she was pregnant. Finally, in 2005, a letter from prison confirmed the mother drank heavily during all three pregnancies.
That letter was hard to take for Shyra, but knowing the truth didn't change much. Shyra, 16, still struggles in school. She has memory problems. She has trouble with basic math and counting money. The soft-spoken teenager is bitter over what her biological mom did to her.
"I was mad, and I got sad afterwards," says Shyra, "and I couldn't believe that she did that."
Shyra has still not been diagnosed with fetal alcohol damage. Antone says she's asked doctors at Red Lake to refer Shyra and Joshua, 9, to a fetal alcohol diagnostic clinic. So far that hasn't happened.
AN ENORMOUS NEED IN INDIAN COUNTRY
Antone says the schools are mostly unresponsive. She was denied disability services for the children. Antone says there's very little support in the Red Lake community for her kids' special needs.
"Every time I try to do something to try to get somebody to help me with fetal alcohol, another door slams," says Antone. "And it takes me a few more years for another door to open. Well, I don't have that many years left and I don't know if I can keep doing this. I feel like I'm failing."
Very few kids at Red Lake get diagnosed with fetal alcohol damage. Diagnosis is a long process that requires input from doctors, psychologists, and therapists. There's not even a diagnostic clinic on the reservation. Kids who get a referral are sent to Duluth, hours away, where there's often a six-month waiting list.
"I think there's just an incredible level of denial about alcohol affecting babies, and I'm not sure how you break through that denial."
- Mary May, Leech Lake public health nurse
Yet some say the need at Red Lake is enormous. Family and Children's Services Director Sandra Parsons says last year the agency worked with more than 900 children, many with behavior problems. She believes prenatal alcohol exposure is largely to blame. Yet she says fetal alcohol is one of those hush-hush topics in the community.
"It's kind of one of those 'don't talk about it, don't exist' pieces," says Parsons. "But if we are damaging our kids in those kind of numbers, somebody needs to talk about it. Somebody needs to be looking at what is the reality."
The reality is bleak on many Indian reservations. In some communities, the number of kids in special education is double the national average. American Indian students are three times as likely as other kids to drop out of school. In Minnesota, Indians are 12 times more likely to end up in prison.
Parsons says there's little scientific research to connect the dots from those looming social problems to fetal alcohol damage. But she and others believe it's likely a root cause.
Alcohol damages the wiring in the brain. People exposed have trouble understanding cause and effect. They sometimes have what Parsons calls a Swiss cheese memory, making it difficult to process the world around them.
"They're in trouble at school, they're in trouble at home, they're in trouble on the bus," says Parsons. "It gets to be very frustrating for these kids to believe that nobody listens, nobody understands, nobody cares. And yet they have no clue themselves as to what's going on, or why."
Parsons says Red Lake is trying to get the message out about fetal alcohol damage. The tribe is developing a children's mental health service that will screen toddlers for the condition. And there are efforts elsewhere in Indian Country.
'INCREDIBLE DENIAL' ABOUT ALCOHOL
Public health nurse Mary May, who works for the Leech Lake Health Division, educates women on the dangers of drinking while pregnant. May believes most women know alcohol can damage their fetus, and many quit drinking as soon as they discover they're pregnant. But May says alcohol is so engrained into the fiber of many tribal families, education isn't always enough.
"Even though we have educational efforts, I still think they take their cues from their family, from the society they're living in," says May. "And it may be one thing to say you know alcohol damages a fetus. But if everybody is drinking around you and you want to be a part of that unit, then I think that inclusion is going to be a higher need. I think there's just an incredible level of denial about alcohol affecting babies, and I'm not sure how you break through that denial."
Alcoholism is a big problem among American Indians. A U.S. Civil Rights Commission report says Indians are 770 times more likely to die of alcoholism than any other group. Indian Health Service data shows the alcoholism rate for Indians is more than 600 times the national average.
Mary May says addiction makes it difficult to stop fetal alcohol damage.
"Women tell me that if they're drinking, they don't get prenatal care, because they'll be confronted by the facts that alcohol does affect their fetus," says May. "And they just don't want to deal with the hassle of it."
Alcohol is not only harming babies, it's destroying families. On the White Earth Reservation in northwestern Minnesota, there were around 350 new child protection cases in tribal court last year -- not counting cases that go through state courts. And there may be many more kids outside the court system who are being raised by someone other than their biological parents.
A GENERATIONAL PROBLEM
Tribal Judge Anita Fineday says she suspects fetal alcohol damage is behind much of the family dysfunction.
"My guess is that 90 percent of those cases include a parent or a grandparent who has fetal alcohol effects or syndrome, and I think the children, as well," says Fineday.
What that means is that fetal alcohol damage is two and three generations deep. Brain-damaged parents and grandparents are trying to raise brain-damaged kids -- and they're often failing. The fetal alcohol problem is complicated. It's often intertwined with mental illness and depression. Fineday says it's all being overshadowed by widespread poverty on many reservations.
"All of those things kind of tie in," says Fineday. "What I see with our young moms is a sense of, 'What difference does it make? It doesn't matter whether I drink or not. Things are so bad that it couldn't be any worse.' They don't have any sense of hope, either for themselves or their children."
Fineday has seen 10-year-old alcoholics in her courtroom. She's had 16-year-old pregnant girls roll their eyes at her when she lectures them about drinking. She's civilly committed a few pregnant women to treatment programs, but she says that's rare.
Many American Indians have overcome alcoholism. Pat Moran has been in recovery since 1985. Now she heads the chemical dependency program at White Earth.
Moran says she drank while she was pregnant. Moran knew in her heart her daughter was damaged by the exposure. The girl struggled all through school. She'd sometimes go into unexplained rages.
It wasn't until her daughter's senior year in high school -- the year Pat Moran quit drinking -- that she was diagnosed with fetal alcohol damage.
Moran says she and many other women live with the shame and guilt of hurting their children. She says that stigma holds many women back from seeking help.
"Many years I denied the fact that my family or anyone else was hurt by my using," says Moran. "And that's a big thing to have to admit, that you caused harm to someone else. Not intentionally, because I was addicted. I'm not justifying. I was addicted and I could not stop."
The fetal alcohol problem is not just about alcoholism. The U.S. Surgeon General says there's no safe level of alcohol for a pregnant woman. Even just a few drinks can potentially cause harm to a fetus. Moran says that's an important message for all women of childbearing age.
"A lot of times when young people are out partying and drinking and pregnancy occurs, girls don't even know they're pregnant until maybe a month later, or two or three months later," says Moran. "In the meantime, they may keep drinking. That's a big problem for our young people, because that's a lot of times when the pregnancy happens. Alcohol causes promiscuous behavior, and our kids are out there more and more drinking with the opposite sex. Alcohol is a big factor in a lot of the unplanned pregnancies."
TRYING TO MAKE A DIFFERENCE
The White Earth Reservation got a five-year state grant to fight prenatal alcohol exposure. Allan DeGroat, director of the three-year-old program, says changing the mindset of the community is a huge challenge.
"Some days I sit there and think, 'Are we making a difference?' But I am passionate about this... I grew up around it and I need to help out," says DeGroat. "The Creator gave me this here opportunity to help out people that can't talk for themselves, are afraid to talk about fetal alcohol effects, or are in denial."
"We're not here to pass judgement on any male or female or any family," DeGroat adds. "We're here to help them get a better life for themselves and their children."
The goal of White Earth's fetal alcohol program is to create a reservation-based diagnostic clinic by the end of the year. There's education going on in schools, and there are plans to create support groups for families.
But those kinds of efforts are expensive. It's unclear what happens when the money runs out.
People in the Indian community are quick to point out that fetal alcohol damage affects all races. It affects some 40,000 newborn babies across the country each year, not just Indians.
According to the U.S. Department of Health and Human Services, alcohol causes more harm to a fetus than marijuana, cocaine, meth, even heroin. Yet experts say fetal alcohol exposure gets far less attention than it deserves.