Fetal alcohol syndrome needs more awareness, group says

September 10, 2009 By Bonnie Miller Rubin

For a decade now, the call has gone out every year on the ninth day of the ninth month warning women about the dangers of drinking while pregnant, yet Fetal Alcohol Syndrome remains stubbornly below the national radar, some health officials say.

At precisely 9:09 a.m. Wednesday, carillon bells will ring out from Austin, Texas to Auckland, New Zealand to observe Fetal Alcohol Spectrum Disorders Awareness Day, another chance to spread the word about the disorder.

In New York, people are expected to "freeze" in front of "Today Show" studios to emphasize the importance of taking a nine-month pause from drinking alcohol during pregnancy.

In the Chicago area, some 300 health professionals, teachers and parents will convene at an all-day forum at Prairie State College to raise awareness about birth defects that experts say are preventable.

Yet, almost 30 years after the U.S. surgeon general began warning women about alcohol-related brain damage, the disorder is still not as widely recognized as autism, epilepsy or other developmental disorders.

"It's frustrating," said Kathy Mitchell, of the National Organization on Fetal Alcohol Syndrome (NOFAS). "Many physicians and health clinics still do not screen women for alcohol use, do not educate them on the hazards of drinking while pregnant and do not recognize FASD in their patients."

In the United States, 40,000 children are born each year with FASD -- more than spina bifida, Down syndrome and muscular dystrophy combined, according to NOFAS. Children exposed to alcohol in utero are prone to poor judgment, impulsivity and are often unable to grasp cause and effect.

So why no telethons? Ribbons? Marches in Washington?

"There's a lot of stigma associated with alcohol abuse and this spills over into FASD," said Edward Riley, of San Diego State University, and one of the nation's leading researchers on the condition. For biological parents, it's difficult because "it means they have to admit that they were a contributor. And for adoptive parents, it means that the perfect family they were looking for might not become a reality."

Just about every mainstream public health organization agrees there is no known safe amount of alcohol, or safe time to drink while pregnant.

But convincing moms even a few beers or an occasional martini can do irreparable damage continues to be a muddled message. Last year on "Good Morning America" an obstetrician told a woman in her eighth month who enjoyed a glass of wine with dinner most evenings not to worry. "You're not going to do harm to that baby," he said.

The American College of Obstetricians and Gynecologists fired back, reiterating its "long-standing position that no amount of alcohol consumption can be considered safe during pregnancy."

Nancy Petersen of Roselle, Ill., adopted two kids -- a son and a daughter -- from Russia in 1997. Victor, who was almost 5 years old at the time, started showing behavioral symptoms almost immediately.

Armed with documentation of Victor's birth mother's chronic alcoholism, it still took Petersen five years to get help because he has no outward signs his capabilities lag far below his chronological age. "It's an invisible disability," said the mother, whose son, now 16, attends a therapeutic school in Bartlett, Ill.

Looking back on the past decade, Riley, the researcher, said, "We have a much better understanding of the mechanisms ... However, I think we have a long way to go."
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