Chicago mom fights to bring awareness of disorder

By Karen Mellen
Chicago Tribune staff reporter
Published September 10, 2004

Vivian Botka of Streator knows her 21-year-old adopted daughter, Kristy, who
has a very low IQ and needs help feeding and dressing herself, is the extreme
outcome from fetal alcohol syndrome.

But about 1 percent--or about 40,000--of babies born each year suffer from
fetal alcohol spectrum disorders, a wide range of problems from facial
deformities to growth deficits to hyperactivity, caused by alcohol consumption
during pregnancy, according to advocates.

On Thursday, Illinois commemorated its first-ever Fetal Alcohol Syndrome
Awareness Day, designated in a proclamation signed by Gov. Rod Blagojevich
after Botka lobbied state officials.

Although advocates concede that a proclamation is not as helpful as more money
for prevention or treatment programs, they say that even small steps are
necessary to educate the public and combat apathy.

Emerging research suggests even a few drinks can harm a fetus in some pregnant
women. But a survey of obstetricians by the American College of Obstetricians
and Gynecologists in 1998 found about half of doctors questioned believed the
occasional use of alcohol would not increase the risk of damage.

That has led advocates to focus more energy on getting the word out to doctors
and pregnant women who occasionally drink wine or beer.

Studies show the most severe cases of fetal alcohol syndrome are caused by
consuming significant amounts of alcohol.

"Everyone recognizes that fetal alcohol syndrome is the leading cause of
diagnosable mental retardation in the United States, and that's true," said
Dr. Ira J. Chasnoff, a pediatrician at Chicago's Children's Research Triangle,
which annually takes in 1,000 new patients.

"However, the majority of children we see here have normal intelligence. ...
The children look normal, and they have normal cognitive development. But they
have severe problems in learning and behavior and development."

These children often suffer from fetal alcohol spectrum disorders, which
include a broad range of symptoms caused by alcohol exposure. Learning
disabilities and behavioral problems are two examples.

Chasnoff said medication sometimes is prescribed to treat symptoms and that
therapy for the family and child is recommended. But all that can be
prevented, he stresses, if women are encouraged to stop drinking entirely when
they learn they are pregnant.

The College of Obstetricians and Gynecologists, in literature available to
patients, also tells women that the best course is to not drink any alcohol
during pregnancy because it is unclear how much alcohol is too much.

Chasnoff said not every woman who drinks alcohol during pregnancy will bear a
child with fetal alcohol syndrome or fetal alcohol spectrum disorders. That's
because genetics affect how a woman's body breaks down alcohol, and alcohol is
more harmful at specific times during pregnancy, doctors say.

Chasnoff said his center regularly has cases in which one fraternal twin has
fetal alcohol syndrome and the other does not, showing genetic differences in
babies also can contribute to the severity of problems from alcohol.

"If you want what's best for our children, you simply won't drink during
pregnancy," he said.

In general, studies show the most severe cases of mental retardation and brain
damage are caused by excessive alcohol consumption by pregnant women,
including binge drinking. That was likely the case for Kristy Botka, her
mother said.

As a result, the National Organization on Fetal Alcohol Syndrome continues to
push for more screening of pregnant women who are at risk of drinking heavily,
to refer them to Alcoholics Anonymous meetings, for instance, or even in-
patient treatment until the due date.

That's not an easy job, as many women may not be forthright when discussing
alcohol dependency, said Adam Litle, director of government affairs for the
Washington-based organization.

"There's a lot of shame and blame that goes with the mother," he said.

But Botka, like other adoptive parents of children with fetal alcohol
syndrome, hopes to change the stigma. She believes that no mother willingly
would harm her child, but that pregnant women need to understand better the
risks they face in drinking alcohol.

"They weren't abused by their mothers; I believe all mothers love their
children," Botka said. "We have to better educate doctors--educate doctors
that mom's not to drink."

When Botka and her late husband adopted Kristy at the age of 6 months, they
knew she had problems but not the nature of them.

"It didn't matter," Botka said. "What better baby to have, than one who needs
more help?"

Now, Botka said her daughter is learning independent living skills at Trinity
Services in Mokena. She does not speak but can make the "g" sound, or lead her
family to the object she wants.

Botka said she would continue to lobby for more services for children who are
disabled because of alcohol use, as well as push for more prevention of
drinking for mothers.

"We just want to make sure children are diagnosed right, so they get the right
services," she said.


Copyright © 2004, Chicago Tribune