Malvina is a million dollar baby.
Malvina has fetal alcohol syndrome (FAS). Her mother, a young Indian woman from Alaska who drank heavily while angrily denying her pregnancy, sought medical assistance only after the first labor pains signaled Malvina’s imminent arrival.
During her time in the womb, Malvina wallowed in alcohol as often as her mother drank. The placenta allowed free passage of alcohol consumed by the woman into the baby’s bloodstream. Her mother left the hospital and was back on Skid Row while Malvina’s medical bills soared past $100,000.
Just ten years ago, most low birth weight babies with severe problems died at birth. Today newborn intensive care saves four of five.
When doctors deem her strong enough, Malvina will need surgery for cleft palate at a cost of $75,000. If she survives, she can look forward to almost certain rehospitalization for pneumonia, failure to thrive, hip dysplasia and other problems at a cost of $15,000. Heart, dental, kidney and spinal problems may appear later.
In addition to foster care, Malvina will need a special trainer to teach her to sit up, crawl and do those things normal babies do by themselves.
Fifty-eight percent of FAS babies surviving birth have IQ’s below 70. Social service costs for the moderately to mildly retarded child in Alaska are $25,000 a year. Special education costs add another $20,000 each year for 15 years.
When she becomes an adult, $135,000 in training will equip Malvina to live in a group home and work in a sheltered workshop at an annual cost to the state of $22,500. Staff researchers for Alaska state Sen. Johne Binkley, who compiled the above estimates, report the average cost to the state of an FAS baby will be $1.4 million over its lifetime.
Jeaneen Grey Eagle, director of Project Recovery at Pine Ridge South Dakota, warns that FAS and its cousin, fetal alcohol effects (FAE), threaten annihilation of Native America. American Indians, having survived war, smallpox and famine, face an enemy that threatens to cripple the coming generation.
Alcohol use begins early among youth on Indian reservations. In a recent survey reported by the Indian Health Service, nearly 70 percent of Indian adults said they started drinking before they reached their teens. In another study, 33 percent of reservation youth 9 to 12 were regular drinkers.
America’s Indian population is young. More than 63 percent of the population is under 30, and the birth rate is 83 percent higher than the national average. If, as some studies have suggested, one drinking mother in four gives birth to a child with FAS or FAE, an epidemic is about to sweep Native America.
But while Grey Eagle uses words like “genocide” and “plague” to describe the FAS/FAE threat in South Dakota, Dr. Dean Effler, a pediatrics specialist for the Indian Health Service in Billings, Montana. reports “there has been a remarkable decline in FAS births in our area since 1980.”
Grey Eagle directs a drug and alcohol recovery program on a reservation where, according to the IHS. the alcohol related death rate is seven times the national average. In an office awash in paper work, she conducts a telephone search for beds in one of several regional treatment centers for a pair of teen-aged drug addicts and a young alcoholic woman waiting in the outer office.
She knows her clients by name. She knows their personal and family histories, histories that include car wrecks, basketball and rodeo heroes, divorces, adoptions, addiction, recovery and relapse.
Alcoholism, a killer and crippler of Oglala people since the tribe’s first contact with Europeans, became a rapidly growing threat to the unborn in the more recent explosion of drug and alcohol addiction among young Indian women.
“A decade ago, the ratio of men to women in alcoholic treatment centers and Alcoholics Anonymous here was 3 to 1, Grey Eagle says. “Today, nearly half the young people in trouble with drugs or alcohol are women.”
The result, she says, is an FAS/FAE epidemic that threatens the future of the tribe’s existence.
“Walking through the schools and hospitals, you can see the results,” she says. “I have heard estimates that as many as one Indian baby in ten has FAS or FAE. Here, I would say the number is closer to one in four.”
While Grey Eagle claims one in four Oglala babies shows the effects of maternal alcoholism, Doctor Effler finds a remarkable decline among the FAS/FAE rate among neighboring tribes in Montana and Wyoming, where the alcohol-related death rate among Indians is one and a half times as high as in the Dakotas.
“Claims that one in four babies are affected are an affront to Indian people, misleading and definitely in error,” Effler says. Effler claims his statistics are more comprehensive than most he has seen. “We don’t just look at birth record data but also at the rest of the child’s life. In some cases a diagnosis is not made until the child shows signs of mental retardation or physical problems three or four years after birth.”
Unwilling to disclose the FAS/FAE rate recorded by his staff, Effler notes. “The encouraging thing is, we have seen the rate drop 69.5 percent since 1980.”
While Effler is outraged by high estimates of the problem among Indian populations, other Montana researchers dispute his assertion that the FAS/FAE rate has dropped nearly 70 percent in the past decade.
Dr. James Reynolds, geneticist at Shodair Children’s Hospital in Helena, is astounded by Effler’s claim.
“Where did he get that number?” Reynolds asks. “Numbers don’t count until they are in print.” One of Reynolds’ colleagues, Dr. John Opitz, estimates that as many as one in ten Indian babies in Eastern Montana are born with FAS or FAE.
Still another researcher, Dr. John Aase of the University of New Mexico, sampled Effler’s region and found an FAS/FAE rate among the Native American population about equal to that of Sweden and France, or less than 2 cases per 1.000 births.
Why the great gap between Grey Eagle’s estimates and Dr. Effler’s claims? Why the difference between the findings of Aase and Opitz? Dr. Aase, who has sampled Indian populations from the Arctic to the Mexican border and found FAS/FAE rates as high as 1 in 10 and as low as 1.9 in 1,000, cites three reasons for the disparity:
“First, a diagnosis of FAS or FAE is fraught with implications. It could mean you are a bad mother, have a bad tribe, run a bad health system. Or, if you run a treatment program, it could mean you need more money to fight alcoholism. There are a lot of agendas involved, a lot of axes being ground.
“Second, Indian populations differ. The problem may be greater among South Dakota’s Sioux than the Montana-Wyoming tribes. (A 1982-83 University of New Mexico study of Indians on 26 reservations in New Mexico, Colorado, Utah and Arizona showed a wide variation in prevalence of FAS among cultural groups. Among Navajo Indians, the incidence was 1.4 FAS cases per 1,000 births; among Pueblo Indians it was 2 per 1,000 births and among Plains Indians sampled it was 9.8 per 1,000 births.)
“Finally, and most important, there is no single “gold standard’ for FAS/FAE,” Aase said. “Fetal alcohol syndrome is what a clinician says it is. It could range from full blown FAS with all the symptoms to the case of a slightly hyperactive first grader who is slightly smaller than average.” Even when there are no “special agendas” involved, diagnosis and reporting of FAS results in great discrepancies. According to a 1987 congressional report, Cleveland had .4 cases of FAS per 1,000 in 1973-79. The same report shows three cases per 1,000 in 1979-82, an increase of 750 percent.
Dr. Sterling Clarren, a researcher from the University of Washington where FAS was first studied and described, says diagnosis can be “a bit of an art.” Clarren sent photos of 42 children to seven experts and asked them to judge which of these youngsters suffered prenatal alcohol damage. Clarren says he was pleased that 6 of the 7 did very well. One expert did not.
“FAS is a recognizable syndrome,” Clarren said. “Diagnosing it is a matter of pattern recognition. Some people are better at it than others.”
If diagnosis of FAS is a blend of art and science, diagnosing the less pronounced fetal alcohol effects can be a judgement call, and thatjudgement is subject to the pressures of politics surrounding public funding. “This country has never done a good job in funding research and treatment of birth defects,” Clarren says. “We tend to play one cause against another. There is money for the treatment of certain heart defects but not others, for certain spine defects but not others. There is funding to repair a cleft lip but not a cleft ear. There’s a zillion telephones competing for your money.”
Clarren insists FAS/FAE is a preventable birth defect, one that could be eliminated. “There’s no reason for it to continue,” Clarren says. “it can be whipped, but it will take the cooperation of the state, alcohol vendors, the tribes, and health care providers.”
Molly Malone, public health nurse at Crow Agency, Montana, finds that cooperation scarce. “It’s a frustrating struggle when the womanis pregnantandyoucan’tmakeherquit drinking,” she says.
Social workers and nurses like Malone who are involved with FAS mothers and infants complain that the state has little interest in the problem, tribal governments find it an issue too hot to handle, bar owners refuse to hang up posters that warn of alcohol danger to the unborn, and doctors with a shallow understanding of alcoholism and drug addiction too often believe a pregnant alcoholic can “just say ‘No.”‘
Fetal alcohol syndrome is a specific pattern of abnormalities in babies of chronic alcoholic mothers. Although this condition has only recently been described, the link between maternal alcoholism and serious problems in infants has been suspected for centuries. Classical Greek and Roman mythology suggests that drunkenness at the time of conception can result in serious problems in fetal development. Ancient Carthegian ritual forbade the drinking of wine by the bridal couple during their wedding night in order that defective children might not be conceived.
Researcher Dr. Frank Iber of the University of Maryland notes that until recently, the Bible offered better medical advice than most doctors. Ancient Hebrews believed alcohol would cause birth defects. The book of Judges warns “thou shall conceive and bear a son, and now drink no wine or strong drink.” In the middle of the last century, British novelist Charles Dickens observed that children born of chronically drunken mothers were frequently mentally defective.
But it was not until 1973 that a Seattle doctor noticed that babies born to alcoholic women were frequently and uniformly malformed and often mentally retarded. Dr. David Smith of the University of Washington Department of Pediatrics described and named this infant malady fetal alcohol syndrome.
Smith and three other doctors found the mother’s alcohol consumption stunted an infant’s growth before and after birth. IQ’s of children followed by the University of Washington team ranged from 50 to 83 with an average of 63.
The discovery of a link between maternal alcoholism and birth defects may have caught the Indian Health Service off guard. The IHS has long fancied itself a miracle worker. Under-funded, understaffed and working under primitive conditions, the IHS fought a frontier war against disease, malnutrition and infant mortality.
IHS records reflect dramatic results from heroic efforts: The number of Indian mothers dying in childbirth was eight times as great in 1957 as today. The infant mortality rate among Native Americans plunged 84 percent in the past three decades. Today it is 9 percent below the national average.
IHS’s medical missionaries successfully assaulted influenza, diphtheria, smallpox and other killers. Tuberculosis ravaged reservations and remote villages as late as 1946 when it still accounted for 43 percent of all Native deaths in Alaska. Only 13 Alaskans died of tuberculosis between 1981 and 1988. Life expectancy at birth for Indians has increased from 51.1 years in 1941 to 71.1 years today.
But the IHS has found FAS/FAE a foe like none other. Most mothers of FAS/FAE babies are chronic alcoholics, victims of a disease that cannot be eradicated by vaccines, cured by wonder drugs or treated with expensive, high-tech equipment.
Poverty, high unemployment and cultural trauma aggravate alcoholism rates on reservations but most of these factors are beyond IHS influence. While the IHS finds itself in an uncomfortable position, counselors and administrators of Indian alcoholism treatment programs charge the agency with down playing or even covering up an FAS/FAE problem that it finds medically, and politically vexing.
Anna Whiting Sorrell, Director of the Alcohol Program for the Confederated Salish-Kootenai Tribes at Ronan, Montana, says, “I don’t know how anyone could say FAS has gone down. Have drinking rates gone down? Is there a reduction of drinking among native women?”
Sorrell, who is part Salish, says no one qualified to diagnose FAS/FAE has tested children on her reservation in the six years she has directed the tribal alcoholism program.
Last year, Sorrell herself felt the sting of the political implications of FAS/FAE.
“We wrote a little $5,000 grant to do FAS education,” she says. “We called our campaign Only the Best for Our Babies,’ and handed out buttons with a little rosebud and that slogan. We held dinners in each reservation community, showed a film and answered questions.
“You couldn’t believe how much emotion we turned loose. People were terrified that we would blame mothers with FAS babies, that we would label children for life.
“FAS is a problem that cannot be corrected in children who have it,” Sorrell said. “Emotions surrounding FAS are tremendous. Guilt eats at everyone. Women wonder if their drinking hurt their baby. Men wonder if their own drinking encouraged their wife’s abuse of alcohol during pregnancy. Alcoholic women who are pregnant are forced to take a look at their disease.
“It’s a terribly touchy subject,” she says.
Jerry Lyle, national coordinator of HIS’ handicapped children’s programs, says the agency is considering creation of an FAS/FAE team to conduct training clinics for doctors, nurses and social workers on reservations.
Funds for this effort are not yet committed. Statistics like those kept (but not made public) by IHS’s Dr. Effler will influence the appropriation process. Sorrell says “Dr. Effler’s claim of a 70 percent decrease could make people think we no longer have a problem.”
Increased attention to FAS has brought outside money as well. The Robert Wood Johnson Foundation, the nation’s largest health care philanthropy. operates an “Improving the Health of Native Americans” program, which recently approved 13 new projects in Indian areas in Oklahoma, Arizona, Idaho, Minnesota, New Mexico, Wisconsin, Montana and South Dakota. Most deal with projects to prevent alcohol and drug abuse. One program, in Bernalillo, New Mexico, is for coordinated care for chronically impaired Indian children and families. Another, in Kayenta, Arizona, is to improve access, use and delivery of health services for Navajo women.