Suburban families cope with fetal alchohol syndrome
Five-year-old Sasha Wagner wants to be a "hunter of wolves" for Halloween. And she will ride on the wolves' backs. Unless she's a lion instead.
The words spill out rapidly, accompanied by peals of giggles. People always tell Janet Wagner what a great kid Sasha is, so chatty and outgoing.
"And she is," said the Glen Ellyn mom. "But it's really hard every single day, and it's exhausting."
Sasha's mood can turn on a dime, from sunny to screaming. She can't hold on to thoughts and ideas.
Her winsome little face bears the signs of prenatal exposure to alcohol: small eye openings with an extra fold at the corner of the eye; a thin, flat upper lip; ears that stick out a little. And she's so tiny, still in toddler Size 3 clothes, her mother says, with "Olive Oyl legs with knobby little knees." Sasha was almost 2 when Wagner brought her home from a Russian orphanage, and the mother immediately knew something was wrong. But even with the telltale facial features, it was another year before the family finally got a diagnosis.
Fetal alcohol spectrum disorders are "one of the best kept secrets in medicine," said Dr. Todd Ochs, an fetal alcohol spectrum disorders specialist at Northwestern University. "And unfortunately, it's an even better-kept secret in criminal justice."
Now efforts are under way on several fronts to prevent the disease and deal with its consequences:
• Illinois is the first state in the country to require FASD instruction in sex education classes.
• In DuPage County, State's Attorney Robert Berlin is heading an FASD Task Force aimed at creating a system to provide mental health screening for all youthful offenders for symptoms of FASD.
• All county clerks are supposed to provide a pamphlet describing the cause and effects of fetal alcohol syndrome to couples seeking marriage licenses. However, at this point "very few counties in Illinois are complying with this," said Illinois Appellate Court Justice Joseph E. Birkett, the former DuPage County state's attorney.
The third Illinois Fetal Alcohol Spectrum Disorders conference, held last week in Wheaton, attracted professionals from the fields of medicine, education, social services and criminal justice, plus parents who are raising children whose brains have been damaged by alcohol.
The message they heard is simple: There is no safe amount of alcohol during pregnancy. There is no safe time to drink.
"The brain is in play the entire pregnancy," Ochs said.
In Illinois, 55 percent of women report drinking alcohol, including 10 percent of pregnant women, according to a survey of women ages 18-44.
Nineteen percent of Illinois women report binge drinking -- a rate higher than the national average but similar to neighboring states, including Wisconsin, Iowa and Minnesota. And perhaps surprisingly, the binge drinking rate is highest among women with household incomes greater than $75,000.
Even one drink during pregnancy can cause damage, FASD experts say.
"My message is (unprotected) sex and alcohol don't mix," said Vivian Botka, FASD Birth Parent Network Coordinator, who worries people won't know they are pregnant and will continue to drink.
While FASD is the leading preventable cause of mental retardation, the majority of children affected have normal intelligence but problems with memory, attention, problem-solving and behavior. A teen with FASD can be too trusting and unable to learn from mistakes.
This can lead to trouble in school, trouble holding a job and trouble with the law. The typical youth with the disease who winds up in the criminal justice system is a nonviolent repeat offender.
"The earlier we get to these kids, the better their lives are and the safer society is," Ochs said.
Fetal Alcohol Syndrome, or FAS, is the most severe of the alcohol-spectrum disorders. But even there, the degree of impairment ranges widely.
Botka's adoptive daughter Kristy, 29, functions near the 18-month-old level and is just getting out of diapers.
Emily Travis, Miss Illinois Outstanding Teen 2008, is a straight-A student in college, fluent in Spanish and a classical pianist.
Travis' birth mother drank heavily throughout her pregnancy and also was addicted to cocaine. Travis struggles with memory, sensitivity to sounds and touch and impulsivity. She has a hearing deficiency and a heart condition.
"Everywhere I travel and every speech that I give, my No. 1 (point) is that this is 100 percent preventable," said Travis, the reigning Miss Southern Illinois, who will compete next summer for Miss Illinois.
There's still a long way to go to get the word out, advocates say. Even now, some doctors shy away from talking to a female patient about drinking. "They don't want to embarrass her; they don't want to make her feel bad," Ochs said.
In August, the American College of Obstetricians and Gynecologists sent physicians laminated pocket cards with tools for screening women for at-risk drinking, which includes any drinking during pregnancy.
DuPage County officials plan to survey school districts to make sure they are complying with the 2010 state law requiring sex education classes to include instruction on FASD as well as HIV/AIDS, STDs and abstinence.
There's also a push to improve the diagnosis of FASD, which can be tricky, especially in children who don't have the facial features. Most don't.
"My colleagues don't know much about FASD, and it's a shame," said Ochs, a pediatrician, adding that a 2009 study showed as many as many as 2 percent to 5 percent of first-graders have the disease.
Because Sasha's FAS was identified early, she's made significant progress in occupational therapy. She also has art and music therapy, which are believed to help improve the communication between the right and left sides of the brain, which is often impaired in people with FASD. Next fall, she'll start kindergarten. "She's going to be in special ed, and she's going to need a lot of services," Wagner said.
Wagner, an attorney, said her goal is for her daughter to attend college. And she's doing what she can to raise awareness of alcohol spectrum disorders, which are more common than autism or Down syndrome.
"It's crazy that people don't know about FAS when so many children are affected."
According to Illinois NOFAS (National Organization on Fetal Alcohol Syndrome):
Ÿ As many as 9,000 babies in Illinois are born each year with fetal alcohol symptoms.
Ÿ 10 percent of pregnant women say they drink.
Ÿ 2 percent of pregnant women admit binge drinking.
Ÿ 43 percent of pregnancies are unintended.
Ÿ Annual estimated cost of FASD in Illinois is $334 million.
Ÿ Annual estimated FASD-related cost for special education and juvenile justice is $64 million.
Where to get help
Ÿ Illinois Center for Fetal Alcohol Spectrum Disorder in Naperville, (630) 369-4152, and Des Plaines, (847) 299-2200, which offers screening, therapy (including neurofeedback and skills training), counseling, support groups and advocacy.
Ÿ Illinois NOFAS (National Organization on Fetal Alcohol Syndrome), nofasillinois.org.
Ÿ Local support groups. For the DuPage County FASD Parent Support Group, call (630) 369-4152 or email firstname.lastname@example.org. For the Northwest Suburbs FASD Parent Support Group, call (847) 458-2534 or email email@example.com.
Ÿ Illinois Birth Parents Network. Call (815) 993-1774 or email firstname.lastname@example.org.
Ÿ Recommended reading: "Fetal Alcohol Syndrome: A Guide for Families and Communities," by Ann Pytkowicz Streissguth (Paul H. Brookes Publishing, $26.95).