Saturday, October 10, 2015
NEWELL, S.D. — In one arm, Nora Boesem held a 9-year-old boy who sobbed as he told of being beaten up on the bus ride home from school.
In the other arm, she cradled a 4-year-old girl, who was being fed through a tube in her stomach.
Across the room, another 9-year-old boy, whose wrists are permanently bent at 90-degree angles due to a birth defect, paced the floor.
Top: In the chaos of a large family getting ready for school, Jeremy Boesem, 9, hugs his mom, Nora, while she tube-feeds son A.J., 9, in their home in Newell, South Dakota. The other Boesem children in the picture are, from left, Mark, 3; Kayleigh, 9, and Rachel, 14. All of the children were adopted by Boesem and her husband, Randy. Each child was born with fetal alcohol syndrome. (RYAN SODERLIN/THE WORLD-HERALD)
And darting across the living room was a 3-year-old boy, who hurled a plastic toy against a wall.
Boesem’s living room is a window into the sad and chaotic world of fetal alcohol syndrome: kids born with physical deformities and organs that didn’t develop fully; kids with lifelong learning disabilities and brains that don’t comprehend the consequences of risky and mean acts.
This is also a place where the unseen consequences of the rampant alcoholism on nearby Indian reservations come into sharp focus. Consequences that transcend any public policy debate and can mean lifelong physical and emotional problems for children, the innocent victims of an ugly addiction.
Boesem, a former pediatric nurse, and her husband have served as foster parents for 93 kids over the past 15 years, and ended up adopting 12 children — all from nearby reservations, and all suffering, either mildly or profoundly, from fetal alcohol syndrome.
Left: Dontae, 13, stashes his clothes in his locker with brother A.J. close by. Right: Annemarie Johnson, an occupational therapist with Black Hills Special Services Cooperative, works with Arianna Boesem, 4, left, and her brother, Mark, 3. (RYAN SODERLIN/THE WORLD-HERALD)
Seven of the Boesems’ nine children still at home came from the Pine Ridge Indian Reservation, where it’s estimated that one in four children is born with fetal alcohol syndrome. That 25 percent compares to estimates of 1 percent nationally.
Some activists say that Nebraska bears some of the blame for this epidemic. Just across the border from Pine Ridge is Whiteclay, Nebraska, where four beer stores dispense nearly 4 million of cans of beer a year. Most are purchased by residents of the officially dry reservation, where alcoholism rates have been estimated at upward of 80 percent.
While fetal alcohol syndrome is not just a Native American problem, and not just a problem on the Pine Ridge Reservation, it has been labeled as the “tragedy of the Pine Ridge” because of the high rate of incidence there.
The one-in-four estimate is hard to fathom because of its impact on generations of children. The estimate includes the full range of fetal alcohol disorders, from full-blown fetal alcohol syndrome involving physical deformities and abnormal growth to less severe cases involving learning disabilities and lack of impulse control.
Some believe the incidence of fetal alcohol disorders might actually be higher on the reservation because alcoholism is so rampant.
“This is decimating this reservation,” said Boesem. “You’re seeing a population that is affected very, very hard by the alcoholism there.”
“It will continue to get worse unless something happens,” she added.
Three of the Boesem children play outside: from left, Mark, 3, Jeremy, 9, and Frannie, 11. (RYAN SODERLIN/THE WORLD-HERALD)
Frank LaMere, a Native American activist from South Sioux City, Nebraska, recently traveled to Whiteclay to meet with Boesem and two other woman who have cared for children with fetal alcohol syndrome.
He said that the children were the “human toll” of refusing to shut off the flow of alcohol from Whiteclay. Though some maintain that shutting down Whiteclay’s stores won’t stem the flow of alcohol, LaMere said the state’s inaction allows the proprietors there to make millions off the misery.
“We as Nebraskans ought to be ashamed,” he said.
For its part, the Oglala Sioux Tribe recognizes that there is a problem and has launched efforts to address the issue. Among those is a program to educate women about the consequences of drinking while pregnant.
Boesem also is trying to shine a light on the issue of fetal alcohol syndrome.
She now works for Behavior Management Systems in Rapid City, counseling families who have children with fetal alcohol syndrome and teaching weekly classes to parents on how to care for children who act and react so differently from the norm.
Boesem started her own nonprofit organization, Roots to Wings, and, until the grant funding ran out, gave workshops on fetal alcohol syndrome at reservations across South Dakota as part of an effort by a Rapid City organization, the Chiesman Center for Democracy, to raise awareness about fetal alcohol disorders.
“I flunked speech twice in high school. I was terrified,” said the native of Philip, South Dakota. “But when I started giving speeches, I found I had a passion for it.”
Boesem never envisioned herself as an advocate for this cause, or as a foster parent.
She and her husband, Randy, who runs a bulldozer at a coal mine across the state line in Wyoming, lost several children to miscarriages. She encountered infants with fetal alcohol syndrome at her job at a Rapid City hospital — infants who had been abandoned by their mothers and had nowhere to go.
Finally her husband, a Canadian who is part Native American, told her to stop crying about the babies and do something.
The Boesems started by fostering two kids. But after six months, no one stepped forward to give them a home. So the Boesems adopted them. And then adopted more.
“After four (kids), my husband said it didn’t get harder,” she said. “I guess we thrive on chaos.”
And there is chaos, because kids with fetal alcohol syndrome deal with so many issues. Many are hyperactive or have attention disorders. Some have facial deformities, hearing problems, learning disabilities. Many are smaller than normal kids.
Kayleigh Boesem goes for a spin outside, courtesy of big brother Dontae, and with little brother Mark in tow. (RYAN SODERLIN/THE WORLD-HERALD)
That’s clear inside the Boesems’ home, a double-wide trailer on the edge of Newell, a ranching town 55 miles northwest of Rapid City.
One son, Mark, 3, explodes in tantrums and screams endlessly until he’s calmed by a long stay in a crib.
Another son, Dontae, 13, was born with a blood-alcohol level of .185, more than twice the legal limit to drive.
A.J., 9, was prematurely born at 25 weeks with methamphetamine and marijuana in his blood. His twin sister died in childbirth. A.J. survived, though his wrists, hands and face are deformed.
About fetal alcohol syndrome
The syndrome occurs when alcohol in the mother’s blood passes to the fetus through the umbilical cord. There is no safe time or known amount of alcohol that can be consumed during pregnancy. All types of alcohol are harmful, including wine and beer.
Signs and symptoms, which can range from mild to severe:
» Abnormal facial features, such as a smooth philtrum — the ridge between the nose and upper lip
» Small head size
» Shorter-than-average height
» Low body weight
» Poor coordination
» Hyperactive behavior
» Difficulty with attention
» Poor memory
» Difficulty in school, especially with math
» Learning disabilities
» Speech and language delays
» Intellectual disability or low IQ
» Poor reasoning and judgment skills
» Sleep and sucking problems as a baby
» Vision or hearing problems
» Problems with the heart, kidneys or bones
Source: Centers for Disease Control and Prevention
One issue the Boesems face: Kids with fetal alcohol syndrome often don’t recognize the risks of certain behaviors and actions.
One daughter, Rachel, 14, once punched her fist through a window. “I don’t know why,” was her explanation, according to Boesem.
One son’s failure to recognize risk was fatal. Donovan was 17 when he died of asphyxiation after wrapping a rope around his neck while playing the “pass out” game. Boesem said it came a day after he viewed a film at school about preventing such an accident.
Another son, Vincent, 24, was passed among 19 foster homes before the Boesems took him in. Now he is in a South Dakota prison for stealing a car. Vincent has an IQ of 68. Boesem doubts he understood the consequences of taking the vehicle, which happened a week after he moved out of the Boesem home.
“He’s 6-foot-1 and developmentally a 6-year-old,” Boesem said of Vincent. She said he probably could hold down a job, but would need constant coaching and counseling.
Ari, 4, has undergone a half-dozen surgeries since birth. She has heart defects, brittle bones and severe epilepsy, and is fed through a stomach tube.
Ari has already lived longer than expected.
“I don’t know an area of her body that formed the right way,” Boesem said.
A child’s organs develop early in pregnancy, so drinking during the first few weeks of pregnancy disrupts their development, said Dr. Amy Elliott, a senior scientist with Sanford Health, a Sioux Falls, South Dakota-based medical center that has studied the prevalence of fetal alcohol syndrome.
The U.S. Centers for Disease Control and Prevention recommends no alcohol consumption during pregnancy. The more a woman drinks, the worse the outcomes for her child, Elliott said.
Fetal alcohol syndrome is easily preventable. But women with alcohol problems are at a higher risk for an unplanned pregnancy. The woman may not realize she is carrying a child until several weeks into the pregnancy. Some problem drinkers are unable to stop drinking, but even for those who do stop, the damage may already be done.
Randy and Nora Boesem live in Newell, South Dakota, which has a population of about 650 people. Bear Butte, which is located near Sturgis, South Dakota, is considered sacred to the Lakota and by other Native American tribes. (RYAN SODERLIN/THE WORLD-HERALD)
Elliott and others emphasize that women in all demographic and racial groups can have children with fetal alcohol syndrome, and that it’s not a problem unique to Pine Ridge or other Indian reservations.
But because alcoholism rates are higher there, the incidence of fetal alcohol syndrome also is higher, they said.
A study conducted by Sanford Health and published in 2014 found that the incidence of fetal alcohol syndrome and its associated disorders was between 2.4 percent and 4.8 percent among first-graders in the Sioux Falls school district.
Previous estimates by other groups put the rate at about 1 percent nationally, which is about the same as for Down syndrome.
Top: Just across the state line from the Pine Ridge Indian Reservation, a woman who said her last name was Tail drinks on a sidewalk. Bottom: Robert Two Dogs, right, shows off his tattoos while drinking with friends in Whiteclay, Nebraska. (RYAN SODERLIN/THE WORLD-HERALD)
While a similar study of fetal alcohol syndrome has not been done on the Pine Ridge Indian Reservation, the tribe, based on anecdotal evidence, has estimated that one in four children born from the reservation have fetal alcohol syndrome.
Boesem believes the incidence is probably higher. Fetal alcohol syndrome is expensive and difficult to diagnose, and often, she said, birth mothers will not admit to drinking during pregnancy. As a result, many cases don’t get diagnosed.
“I’ve seen family members of some of my adopted children laying in the street in Whiteclay,” she said.
Barbara Vancil of Hay Springs, Nebraska, who runs a free thrift shop for the poor and has fostered two children from the Pine Ridge who have fetal alcohol syndrome, said the high incidence of the malady has huge consequences for the future of the reservation, which has an estimated 28,000 residents. One in nine is younger than age 5.
“These kids are so precious, but unless they get some kind of support in school and beyond, they’re not going to make it,” said Vancil, who has formed her own fetal alcohol syndrome awareness group in Nebraska, Special Needs Advocates and Parents, or SNAAP.
In 2011 the Oglala Sioux Tribe received an $800,000 grant from the National Institutes of Health. It teamed up with Sanford Medical to launch the Choices program, which now counsels about 175 women.
Though it has only two “interventionists” to cover nine districts on a reservation that’s nearly the size of Connecticut, officials with the tribe and hospital say the message of avoiding fetal alcohol syndrome is getting out.
The consequences of drinking while pregnant are discussed at educational forums. Women are offered birth control pills to prevent at-risk pregnancies.
Susan Pourier, the tribe’s program director of the Choices program, said that most young women opt for birth control.
“I thought that some of the elders would say we shouldn’t be giving them birth control, but it’s better than having a sick baby,” Pourier said.
Still, funding is short — the tribe sits in one of the poorest counties in the United States — and those involved say more needs to be done.
Newell, South Dakota, school bus driver Vern McCarthy and teacher’s aide Shannon Dirks help Kayleigh Boesem, 9, onto the vehicle from the back while Kayleigh’s brother A.J., also 9, steps aboard in the front. Kayleigh and A.J. were both born with fetal alcohol syndrome. In addition, Kayleigh has cerebral palsy, and A.J. was a shaken baby. (RYAN SODERLIN/THE WORLD-HERALD)
Boesem is doing her part, not only through her counseling but by caring for the nine children still living in her home. Because the kids were adopted via foster care, they qualify for Medicaid, which she said makes it possible to afford the medications and helpers.
In her lap, she soothes 9-year-old Jeremy. The boys he accused of beating him up are usually kind and friendly to him, she said, so she wonders if Jeremy misunderstood what happened.
Nearby, full-time nanny and friend Raean King helps two other boys, dirty from a mud fight outside, get showers. Later, King hustles off to pick up pizzas for supper from the town convenience store.
Boesem and her husband have won state and national awards for serving as foster parents and their work for children with fetal alcohol syndrome. She has traveled to Washington, D.C., to advocate for help. She’s appearing later this week at a forum at Whiteclay. She counsels 35 families in a fetal alcohol syndrome support group.
When she first considered fostering kids with fetal alcohol syndrome, Boesem said she was told not to do it. There’s nothing that can be done for these kids, she was told; their brains and bodies are too damaged.
But holding 4-year-old Ari in her lap, she finds strength in the tiny girl, just as she does in her other eight adopted children still at home.
“I can’t look at her and say there’s no hope for her,” she said.
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