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Photo by Eric Engman

FAIRBANKS -- “Bells are rung at 9:09 a.m. in every time zone from New Zealand to Alaska ... to raise awareness about the dangers of drinking during pregnancy and the plight of individuals and families who struggle with Fetal Alcohol Spectrum Disorders ...” — FAS Awareness Day, Sept. 9 (www.fasday.com)

Maureen Harwood keeps a picture at work.

In it, a 4-year-old boy sits on her knee. Harwood steadies his waist with her right hand. He wears a big, open smile. His eyes are thin and dark, and his frame is small.

The photo is 16 years old. At the time, Harwood, then a disability specialist with the Lower Kuskokwim School District, had been working with the boy for more than a year as a disability coach. The boy, Eddie Tony, lives with fetal alcohol syndrome and is now 20.

Eddie’s adoptive mother, Marilyn Tony, said Harwood would become more than a disability coach. She was for years his life coach, helping the family landscape the issues that accompany life with fetal alcohol syndrome. Harwood took a genuine interest in Eddie’s well-being and, beyond that, in educating folks in and around Bethel — and, now, much of the state — of the dangers associated with drinking while pregnant, Tony said.

“We knew we had a jewel,” Tony said of her first meetings with Harwood.

Harwood would also become an integral part in forming a fetal alcohol syndrome diagnostic team in Bethel more than a decade ago, said Ardyce Turner, a friend and a former fetal-alcohol specialist at an Interior health corporation.

Harwood, Turner and a handful of others took a grass-roots approach 20 years ago toward spreading awareness of fetal alcohol spectrum disorders at a time when a budding body of literature began to spark broader public interest.

They organized fiddle dances, sold frybread to raise money and scheduled annual walks on international Fetal Alcohol Syndrome Awareness Day — which, this year, falls on Tuesday.

“She really thought that these children were very special,” Turner said of Harwood’s work. “She genuinely cared about them. She still does.”

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In Fairbanks, Harwood serves as one member of a diagnostic and advisory team — the Fetal Alcohol Community Evaluation Services team, or FACES — focusing on a medical and social issue cited as, among other things, the most common cause of preventable mental retardation.

The team includes speech and occupational therapists, pediatricians, psychologists and others who help navigate the social- and medical-services landscape for families with someone affected by his or her birth mother’s decision to drink while pregnant.

The group’s work occurs in the state with the highest documented rate of fetal alcohol syndrome — one of the most complex of the broader “fetal alcohol spectrum disorders,” which result when a pregnant mother drinks.

According to health specialists, when a pregnant mother drinks, she directly exposes her developing child to alcohol, which reaches the tissues of an embryo and fetus as the mother’s blood crosses the placenta. Through this, she greatly increases the chance of causing one of a number of birth defects and behavioral problems referred to collectively by health experts as fetal alcohol spectrum disorders. The spectrum includes symptoms like irreversible brain damage, physical disfigurement, central nervous system damage and lifelong behavioral and learning problems.

Fetal alcohol spectrum disorders are the second-most common type of birth defect reported to the Alaska Birth Defects Registry, following cardiovascular anomalies. The state’s Department of Health and Social Services estimates about 140 infants born in Alaska are affected by maternal alcohol use each year.

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Harwood is a developmental-disabilities specialist for the state’s senior and disabilities branch. She works with families and specialists who assess potential cases of fetal alcohol syndrome and the broader spectrum of disorders.

Harwood remembers her first recognizable encounter with fetal alcohol syndrome in Arizona more than two decades ago. She was working as a first-year teacher at a school for disabled children on a Native American reservation. Some students were prone to outbursts, and one day a 9-year-old boy started throwing rocks at another student who, from his wheelchair, was unable to defend himself.

Harwood told the boy to stop and was promptly flipped off. His reaction caught her off-guard.

“(Another teacher) just said, ‘Oh, he has fetal alcohol syndrome,’” Harwood said. The answer simply made her more curious about something she’d heard little-to-nothing about growing up in New Jersey, something she had yet to understand can put people with it at a higher risk of getting in trouble with the law, having problems at school, acquiring drug and alcohol dependencies and experiencing mental health disorders.

“He was frustrated with his life,” Harwood said she came to realize. “He knew when he did things wrong, and I didn’t think he wanted to be a source of pain and anguish.”

By 1990, when she left Arizona for the Alaska village of Bethel, she had come to view the boy’s behavior as a challenge for anyone interested in understanding the problems of life with fetal alcohol syndrome.

Her move came a year after the publication of a book, “The Broken Cord,” that some point to as helping to push attention toward fetal alcohol disorders into the mainstream. Public awareness was creeping toward the social service and educational sectors in places, including Alaska, with high rates of alcohol abuse.

“People were just figuring things out,” she said.

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Children with full-fledged fetal alcohol syndrome are prone to exhibit a range of physical growth problems, according to the Centers for Disease Control and Prevention.

They may be shorter and weigh less than average babies, characteristics they can’t escape or outgrow with age. Many have smaller heads and distinct facial characteristics including a flat mid-face and thin, droopy eyes.

Children with fetal alcohol syndrome may also have smaller brains, be more susceptible to lifelong attention deficits and be more at risk for intellectual problems. Fetal alcohol syndrome sufferers can also experience developmental delays including poor motor skills and coordination.

As a child with fetal alcohol syndrome ages, his or her developmental problems can manifest themselves in problematic behavioral and social issues. One may possess an unusually poor attention span or be hyperactive. Another can show poor reasoning skills, exhibit a dangerous level of fearlessness or have a tough time learning from his or her mistakes.

“Very often, these young people can repeat directions word-for-word. But they don’t absorb what the directions actually mean,” said Judith Kleinfeld, a psychology professor at the University of Alaska Fairbanks and the author of two books about fetal alcohol disorders.

•••

It was in Bethel that Harwood met Eddie. He was still short of his third birthday, but he was already unusually small for his age. Eddie’s adoptive parents had already been fostering him for over two years, adding him to a big family that included a number of foster children.

Eddie had the physical symptoms of fetal alcohol syndrome: Aside from his small size and facial characteristics, he was jittery and displayed irregular eating habits; there seemed to be little motivation to wake up in the morning; his motor skills were poor.

Harwood remembers spending hours one day walking with Eddie up and down the metal-grated steps in front of Bethel’s grocery store. Again and again, for practice. They sang songs to keep it fun and avoid frustration.

Marilyn Tony said Harwood came along at the perfect time, as Eddie’s disorder was visible enough to make things awkward at and away from home. Harwood’s genuine care for Eddie was like a breath of fresh air, she said.

“She was for real,” Tony said by phone last week. “She laughed at things he did without being embarrassed, because some of them were funny, and she enjoyed who he was. She loves FAS. And that can come off funny to some people.

“But, I mean, they’re here; they need to be loved; they need to be protected,” Tony said of children who fall within the spectrum of disorders. “They need to be included. And Maureen was all about that.”

Harwood moved to Fairbanks eight years ago, becoming a research fellow at the University of Alaska Fairbanks and earning a master’s degree under Kleinfeld in the school’s Northern Studies program. She focused on alcohol-impacted people within the criminal justice system.

Harwood and her husband, Chris, a biologist, planned to return to Bethel, but circumstances kept them here.

Harwood said many people might view Fetal Alcohol Syndrome Awareness Day, which falls on the ninth day of September each year, as an opportunity to remind expectant mothers, young people and others of the health implications of drinking while pregnant. She noted it’s also a chance to bring positive attention to all the people who deal with life with fetal alcohol spectrum disorders.

“Eddie shouldn’t have to live with this decision from his mother,” she said. “But he does. We have to celebrate what he has to offer.”