Part 6: It's 100 percent preventableby Cara Hetland, Minnesota Public Radio,
Tom Robertson, Minnesota Public Radio
Alcohol exposure happens to babies in all segments of society, not just those born to poor women, or minority women, or uneducated women.
The U.S. Surgeon General says there's no safe amount of alcohol for a pregnant woman, but many women don't seem to be getting that message. Studies suggest some 30 percent of women drink alcohol while they're pregnant.
Advocates say many of those women may have consumed alcohol without even realizing they're pregnant. It's not unusual for a young woman to have a few drinks at her cousin's wedding or a New Year's Eve party, then find out two weeks later she's pregnant. Experts say that means a woman who's having sex and could get pregnant should not drink alcohol.
Linda Walinski from Isanti, Minnesota, is the adoptive mom of four kids with severe fetal alcohol damage. Walinski says last year alone, the medical bills for her four kids were more than $1 million. That figure includes 28 hospitalizations for an assortment of health problems associated with fetal alcohol damage.
Walinski says fetal alcohol syndrome is a huge drain on society. She says there has to be a massive prevention effort.
"There cannot be use of alcohol while someone is pregnant. There just cannot be," Walinski says. "We're acting like a factory, churning out permanently brain-damaged human beings. They suffer as a result, and the cost to society is more than we can afford."
It's estimated the nation spends close to $4 billion annually to care for children and adults with fetal alcohol syndrome. That includes costs in health care, social services and prisons. Indirect costs may be much higher.
Even though research on FASD is still in its infancy, Dr. Gene Hoyme, head of pediatrics at Sanford Health in Sioux Falls, South Dakota, is working on a way to diagnose FASD in infants. He says it could save money and improve lives.
"Half the children born with FASD are born to women who have other kids with FASD," Hoyme points out.
"Imagine what would happen if you find those women who had a child with FASD -- because we can diagnose at infancy -- and you said to the mother, 'Your child is damaged by what you have done, and I'd like to help you prevent this from happening again.' So either she stops drinking or she's on birth control. Then half the children are prevented from being born with FAS," Hoyme says.
Hoyme says because alcohol is legal, it's difficult to tell people not to drink, even pregnant women. But he says doctors should ask every pregnant woman questions about their nutrition, and drinking and smoking behavior at every prenatal visit.
To expand research and improve public education programs on FASD, money is essential. Former South Dakota Sen. Tom Daschle has been actively involved in raising money and awareness for about 20 years.
Daschle says he first became aware of fetal alcohol syndrome when he read the book "The Broken Cord" and called author Michael Dorris. He arranged a showing of the movie in Washington D.C. so his colleagues could watch it, too.
Daschle says it's a slow process raising awareness because every cause needs money, attention and legislation of some kind.
"There just isn't enough research money, and enough education money, and enough programmatic money and enough people to address the consequences of this like I wish we could," Daschle says. "It's unfortunate to say, but we just really don't have the resources we need to get the job done."
One of the first steps, according to Daschle, is legislation that would recognize fetal alcohol syndrome as a disability. He says states, school districts and health departments need to list FAS as a mental disability, so services are available to children and adults.
Until that happens, most kids who were exposed to alcohol before they were born will be mislabeled and misdiagnosed. They'll be seen as bad kids, and their behavior will all too often land them into the juvenile justice system.
Kids and adults with a fetal alcohol disorder can't explain their actions or show any remorse. That's another knock against them once they're in the system.
But there are small changes. Some advocates are teaching court officials about fetal alcohol disorders, and training corrections officers on what to look for and who to call for assistance.
There are studies designed to provide clearer information about how many prison inmates have fetal alcohol spectrum disorders. Many fear the number will be high.
Unlike many other birth defects, the damage from fetal alcohol exposure is 100 percent preventable. Experts say that may be the most important message of all.
Cara Hetland has been a reporter for southwestern Minnesota and eastern South Dakota since 1989.