Fetal Alcohol Syndrome Rate Higher Among American Indians
A mother rouses from sleep, cradles her newborn infant and yawns. She then gets up and carries the baby, all soft and not quite ready to wail for food, into the kitchen. She reaches for a bottle, but it isn’t a baby bottle. It’s glass. It has a screw-top. It’s 80 proof. The mother opens the bottle, smells it and takes a drink. Then she pours the liquid, amber and strong and straight-up, into her baby’s nursing bottle. She puts it to her baby’s lips, forces the nipple into her infant’s mouth and smiles as the baby drinks.
This nightmare scenario might as well be taking place every time a pregnant woman drinks alcohol. For the growing baby inside the womb, every drink the mother takes is a drink her baby takes, too, and for that baby inside the womb, nothing will protect her from the harmful effects of the alcohol her mother drinks. There is no filter, no barrier. There is no, No.
And the effects are devastating. According to the U.S. Department of Health and Human Services, fetal-alcohol spectrum disorder, or FASD, “describes a wide range of birth defects that can occur in any baby whose birth mother drank alcohol anytime during pregnancy. FASD is not a diagnosis but refers to a group of conditions. Even though each condition—or disorder—has unique features, all FASDs can result in physical, mental and behavior problems, as well as learning disabilities. Fetal alcohol syndrome (FAS) is the most-common and most-serious disorder. Others are alcohol-related neurodevelopmental disorder (ARND) and partial fetal alcohol syndrome (pFAS). Other terms used less often include alcohol-related birth defects (ARBD) and fetal alcohol effects (FAE).”
The Department of Health and Human Services also notes that “the only sure way to prevent FASDs is to totally avoid alcohol while trying to get pregnant, during pregnancy, or after having unprotected sex where it was possible to get pregnant. Current research shows that no amount of alcohol is sure to be safe to drink at any time during pregnancy.” The heart-wrenching fact about FASD is that it is 100 percent preventable, and one young adult who has struggled with it since before he was even born has devoted his life to preventing the preventable. Morgan Fawcett, a 19-year-old public speaker and flutist, has founded One Heart Creations, a nonprofit dedicated to giving both pregnant mothers and unborn children the healthiest lives possible. He travels the country to raise awareness of FASD, and he uses his personal narrative to spread the word. Fawcett is a victim of FASD, but he has used two things to help him overcome his condition: his family and his flute. Through the support of his relatives as well as the power of his music-based art therapy, he has been able to triumph—and help others triumph, too.
Fawcett calls his organization One Heart Creations because, he says, “during pregnancy, mother and child share one heart.” Though his mission is to focus on youth of all racial and ethnic backgrounds to, he says, help “prevent one more child from being born with fetal alcohol spectrum disorder,” much of his work focuses on the American Indian community. According to the Centers for Disease Control and Prevention, from 1981 to 1991, the prevalence of FAS in the overall U.S. population per 10,000 births was 2.1. Among American Indians, that number was 31.0. And in a 2007 document titled “Fetal Alcohol Spectrum Disorders among Native Americans,” the U.S. Department of Health and Human Services reported that the prevalence of FAS in Alaska was 1.5 per 1,000 live births; but among American Indians and Alaska Natives, the rate was 5.6. Fawcett, who was born in Alaska and is Tlingit and of the Eagle Moiety as well as Kaagwaantaan from the Box House, has experienced much of the personal and social violence associated with alcoholism and FASD. Fawcett’s mother was arrested while she was pregnant with him. Though he was still in the womb on the day of her arrest, he considers it one of the most significant experiences of his life: “I call September 9, 1991 my first day of sobriety.” Incarceration imposed sobriety on his mother—and him. Fawcett’s mother remained in jail throughout the rest of her pregnancy, and he wonders how many more physical, emotional and neurological issues he would be struggling with today had she not been locked up and unable to drink after that fateful day.
Fawcett says he was born undersized, underweight and with no hair, with a persistent case of eczema and a clinical failure to thrive. He adds that in his first year of life, every developmental milestone came later for him. It took him longer to sit up, crawl, talk and walk, and he continues to literally stumble through life to this day. “I still trip and fall all over myself,” he says. “If falling was an Olympic sport, I would take gold every year. I have scars up and down my body from trips and falls and stumbles.”
Fawcett explains that in most children the neurological dysfunction resulting from FASD becomes clear between ages 5 and 9. With the onset of puberty comes a new round of challenges for the young person with FASD, especially as hormones become active and the expectations placed on young adults increase. Fawcett says that in grade school he failed just about every class except for English and science, and his grandmother began taking him to doctors when he was 13 to try to get a handle on what was happening to him. By the time he turned 15, Fawcett was formally diagnosed with scoliosis, submucous cleft palate, spina bifida occulta, underdeveloped muscle mass, deformed hips, nearsightedness, eyes that focus incorrectly, sensory-integration problems, intellectual disabilities and cognitive-skill deficits.
Fawcett says it took so long for these diagnoses to be made not only because some conditions manifest when victims of FASD get older, but also because he had limited access to health care when he was younger. “I was removed from my mother’s custody at six months,” he explains. “I was raised by my father in an abusive household.” Fawcett says that he was abused sexually, emotionally and physically in his father’s home. When Fawcett was 2, his father moved with him to Oregon, where he met and married a woman whose parents worked in the same mill as he. The marriage lasted four years, so by age 6 Fawcett was back in Juneau, Alaska, where the abuse continued, he says.
Fawcett admits to getting into trouble and “not being a very respectful child” while he grew up in Alaska. “When I was 13 my codependency counselor and others arranged an intervention and removed me from my father so I could begin to heal,” Fawcett says. Because some of his happiest experiences took place in the four years he lived in Oregon, he moved back in with his former stepmother’s family, the aging mill workers who were not biologically related to him, but happily claimed him as their own. According to Fawcett, his Grandma Sue said at the time, “‘He’s still my grandson, and I don’t give up grandchildren.’”
One of the greatest gifts Grandma Sue gave Fawcett was the gift of knowledge—a fact-based self-awareness—once he had been to doctors who could explain what was happening to him. “During the year of going to the doctors we started reading and learning about FAS and FASD,” he says. “I started to learn more and more about myself. I learned that I wasn’t stupid, that I actually have organic brain damage.”
Dedicating his professional life to One Heart Creations has meant talking about his very painful experiences with FASD over and over again. “It’s not easy for me to talk about,” he says. “It does hurt me to tell it. But someone has to do it. Someone has to say in a calm, collected manner, ‘This is what alcohol does.’?”
A confluence of loving support from his grandparents and the power of music as art therapy formed the pivotal moment when Fawcett realized his calling in life: “I was playing my flute, and this idea came to me.” He says he told Grandma Sue, “I want to tell my story about FASD. I want to play my flute. I want to help others.” Grandma Sue looked at him, he says, and replied, “‘Well, how exactly are you going to do that?’” “I don’t know, Grandma Sue,” he says he told her, “That’s your job.”
It is a job she took on and continues to perform with grace. Grandma Sue draws up the legal papers and “stuff he can’t,” while Fawcett leads all his presentations and
“what she can’t.” They make a great team, but this family has been supportive of Fawcett from the moment he came to live in their home as a young adolescent—Grandma Sue’s father bought Fawcett his first flute. Fawcett says the family was visiting the End of the Trail Museum at Trees of Mystery in northern California. As they gazed at Native American artifacts, he was given a flute to explore. “I closed my eyes,” Fawcett says, “I played the scales twice, and I composed a song.” Now, three CDs later (Ancestral Memories, Tears of Our Fathers and Legacy), he still calls that moment that he first held the flute the most exhilarating experience of his life.
Fawcett says becoming a flutist helped save him. He would play during his lunch hour at school, and he realized he could retain and recall information better in the afternoon. His grades in his afternoon classes were significantly better than the grades he was getting in his morning classes. Science, Fawcett says, supports his anecdotal experience. Flute playing releases serotonin, he claims, and enables more oxygen to reach the brain so it can function at a higher level. Playing the flute definitely helps him relax, focus and speak better when he does his presentations.
The three CDs he has recorded also celebrate Fawcett’s Native American heritage. “Being Tlingit is not something that I can separate from my work and what I do on a day-to-day basis,” he says. “I wouldn’t be as mentally healthy as I am now without my culture.” He adds that by researching his own traditions with Grandma Sue, “I began to feel whole.”
This wholeness has helped Fawcett reconnect with his birth mother, whom he says has been living semi-homeless in Juneau for the past 10 years. “She still drinks, but I absolutely adore my mother. I do.” He says he tries to get to know her through regular phone calls and helps arrange shelter for her when the weather is bad. Fawcett’s mother has seen him perform and, he says, supports his very honest and very public work around the issue of FASD.
“I’m not angry at my mother,” he says, “I understand she has an addiction and is not a bad person.” He believes that women who drink during pregnancy should not be demonized: “These are women who either didn’t have information, or they were addicted and didn’t have the means or ability to quit.” With FASD, Fawcett adds, there are no perpetrators—only victims.