Originally published Jan. 10, 1988. Part of a series.
A tiny baby struggles in a hospital incubator and lets loose a muffled cry. His wrinkled face turns red from the effort, while pencilthin ribs stand in sharp relief on his palmsized chest. The baby has been isolated in the plastic box because he has almost no fat on his scrawny, 4pound body and because one of the walls in his heart hasn’t completely formed.
The hole in his heart will eventually heal, either on its own or with a surgeon's help. Eventually, too, he will put on weight, although he always will be a small, spindly child.
But nothing will change the damage to his brain or the wreckage on his face. This child, who could have been an Einstein or a leader of his people, or just a normal, healthy boy, will not be like other children. His face will be flat, his lips thin, his eyes curiously folded. He will be susceptible to sickness and seizures. The stunted brain inside his tiny head may never learn to read a book or count the fingers on his hands.
The baby's deformities are not the result of a rogue gene, an unnatural trauma or some act of God.
He is the way he is because his mother drank.
Alaska Natives have the highest known rate of fetal alcohol syndrome in the country. Alcohol stunts one in every 25 Native babies, and the fullblown syndrome arrested growth, organ defects, facial deformities and mental retardation mars at least four of every 1,000 infants born to Native women, according to the Alaska Native Health Board.
That's more than twice the rate discovered among the Navajos, the only other Native Americans who have been studied, and two and a half times the rates in Seattle and New York.
The Alaska figure only counts children identified by health aides at village clinics or pediatricians at the Alaska Native Medical Center.
"Not everyone comes into the clinics. I think there are a lot of addicted women we just don't see," says Jerry Nasenbeny, a pediatrician at the medical center.
No one knows the FAS rate for other Alaskans. The state health department has never surveyed the general population, and private doctors aren't required to report children they think might be affected by alcohol. But the Native health board and many pediatricians believe the nonNative rate is also high.
"We know of one (nonNative) woman in Homer who has had seven FAS kids," says Vicki Hild, coordinator of the board's FAS prevention program. "The youngest is 5 months old. And the mother is still drinking."
These children carry an enormous financial cost. Their hospital bills, special education and welfare payments virtually none will ever be able to live independently will run at least $1 million in each child's lifetime.
But what bothers pediatrician Nasenbeny most is the human potential lost.
"This is an entirely preventable syndrome," he says. "These kids could have been Rhodes scholars. We'll never know."
THE CHILD AS VICTIM
Mack Kvasnikoff Jr., now 9, was the first to show the effects of his mother's drinking.
His four older brothers and sisters had been normal, healthy children. Three were born before their mother started drinking, and the fourth, now a pretty 16yearold, shows no ill effects from her mother's occasional drinking during pregnancy. But Mack wasn't so lucky. His mother drank heavily and didn't stop or even slow down when she found out she was pregnant with him.
Mack Jr.'s round, wideset eyes and thin lips were apparent from birth. When he reached school age, he fell behind the other children and had to be left back a grade.
"The public health nurses gave me pamphlets (about alcoholism and FAS). I threw them away," remembers his mother, Justina, a 38yearold resident of English Bay. When friends commented on the child's small size, she would say, "He's short like me. He's skinny like his dad."
By the time Justina's sixth child, Nicholas, was born in 1982, the Kvasnikoff family had almost fallen apart. Justina and her husband, Mack, fought constantly over booze and hoarded bottles from each other.
Mack Jr. remembers going to school with uncombed hair and dirty jeans. The oldest daughter, Kathy, now 21, remembers her parents passed out in the cluttered living room while the children struggled to make some kind of dinner usually scrambled eggs, because that was all they could manage.
Justina remembers her state of mind during those chaotic, ugly days, and it was brutally singleminded: all that mattered was alcohol.
"When Nicholas was 6 months old he got sick . . . Timmy (the oldest son) told me he might die," she says. "All I thought was, "So what? Then I will be free. Free to drink some more.' "
Today, Justina sits at her Formicatopped kitchen table, her eyes following little Nicholas as he bounces away to watch Sesame Street on TV. Nicholas also turned out to be a FAS child. At 5 he has the body and mind of a 3yearold. Nicholas is also deaf, the result of an diabetesrelated illness at 6 months. Doctors told Justina his deafness wasn't directly caused by FAS, but she says she still feels responsible.
But though small and prone to sickness, Nicholas is as brighteyed and rambunctious as most children, and he wrestles playfully with his older brother Mack before settling down in front of the screen.
The wall over their heads holds a Russian Orthodox shrine, with votive candles and pictures of Jesus that look over the small, spotless living room. A pot of coffee steams on the counter, completing a scene of order and neatness, an island of domestic tranquility in this windwhipped village south of Homer.
But Justina still vividly remembers what the home looked like five years ago. Clothes and debris were scattered everywhere. Dirty dishes piled high in the sink. The smell of unwashed bodies and unemptied ashtrays hung in the air.
She also remembers what she looked like then. Now a softspoken, smiling woman with bright eyes and a pixie haircut, then she was an unkempt drunk. Her face bloated from alcohol, her body battered from her husband's drunken rages, she would stand in the corner and scream obscenities over the citizens band radio whenever she was on a binge. She would drink from morning until insensibility; she drank so much on the night of Nicholas' birth, in fact, that she passed out in the middle of her contractions.
Justina says she started drinking at 19 to cover her natural shyness. Already the mother of three, she wanted to escape from some of her responsibilities and join in the fun her husband and his friends seemed to be having.
She drank until she blacked out. The next weekend, she did it again. The fun quickly turned into weeklong binges and then into months of daily, heavy drinking.
Finally, the Division of Family and Youth Services stepped in. The children were taken away and given to relatives. The Kvasnikoffs were ordered into treatment at the Salvation Army's Clitheroe Center in Anchorage.
That was the turning point.
Both Mack and Justina had been in courtordered treatment before, but neither could admit to alcoholism. This time, the message sank in and they began to face what they had done to their lives and their family.
"At first it was hard to accept (that alcohol had damaged the children). Denial was very strong," says Mack Sr. "But it was a mistake that we both made. I'm not letting her suffer alone."
The Kvasnikoffs have been sober for four years. They say part of their healing comes from talking about what happened to them. Mack is now English Bay's drug and alcohol counselor, and Justina talks with her daughters and sons, and their friends, about the dangers of drinking.
They also talk about learning to forgive themselves, although they say it isn't easy. The evidence of 15 years of binges, blackouts and hangovers always will remain on the faces, bodies and minds of their two youngest sons.
"Kids at school told Mack Jr. that he was small and slow because his mother drank while he was in her stomach. He asked me, is that true, Mommy?" Justina's brown eyes fill with tears. Her voice drops to a whisper. "I didn't know what to say. I say, yes, it's true."
NO DRINK IS SAFE
No one knows how much alcohol it takes to damage a baby. Researchers so far haven't seen the fullblown syndrome in women who drink less than one fluid ounce of alcohol the equivalent of two shots of whiskey or two beers a day. Some women can drink a sixpack a day and produce healthy children.
But as few as two binges, with five drinks or more at a time, can cause birth defects like stunted growth or mild retardation. Because research on the syndrome is just beginning it was discovered by a Seattle doctor in 1973 many doctors don't consider even a single drink during a pregnancy to be safe.
Most Native women now know alcohol can hurt their babies and stop drinking as soon as they find out they are pregnant, says Janet Allan, a nurse at the medical center who screens pregnant women for alcohol problems.
"That's what impresses me the most. It's what I call daily heroics," she says. "These women often have the courage to get out of bad situations. (Many) are faced with domestic violence, emotional violence, sexual violence. It's hard to quit when everybody around you is drinking. But some do."
Alaska has few places that pregnant women can go to escape the pressures of abusive, alcoholic families. Care Cottage, a hospice for women with highrisk pregnancies, keeps a few beds for alcoholic mothers, and shelters like Clare House and McKinnell offer some support.
But many of the pregnant women who stay at the shelters last only a few days or weeks, shelter workers say. Then they return to their friends and their families and their drinking. Some women never seek help at all.
"An addicted person who's using heavily sees alcohol as her best friend," Allan says. "Often the women feel guilty, but they continue to use anyway. They are into the denial stage of the disease."
Their denial is fueled when they see other women drink and give birth to seemingly normal children a not uncommon experience, since fetal alcohol syndrome is not inevitable. Even the heaviest drinker has less than a 50 percent chance of producing a defective child during the first pregnancy.
But once a woman has one child stunted by alcohol, the next babies will be more and more damaged, unless the mother stops drinking, according to researchers. That's why the Native health board urges villages and regional corporations to develop prevention programs, to educate children as early as junior high about the dangers of drinking and to step in with counseling and guidance when women are in danger of producing alcoholdamaged children.
What's at stake, many health care professionals fear, is the future of the Native population as a whole.
“What’s going to happen if we keep reproducing children that are so badly affected? How effective are we going to be?” asks Elenore McMullen, a village health aide who runs the fetal alcohol prevention program in Port Graham. “People have to be involved. Or what’s the Native population going to be like in the years to come?”