"Alcohol is a neurotoxin," said Tom Donaldson, president of NOFAS. "Why would you want to ingest any amount?"
"We see articles that say you can't tell a woman, even if she is pregnant, she can't have a drink on New Year's Eve or her anniversary or Christmas," he said. "Are you willing to take the risk? It's like saying to your child you can eat lead paint off just one window sill, but not four."
FASD is one of the leading causes of developmental disabilities and many doctors are not well-trained in diagnosis and few resources exist to help these children.
The disorder is still not recognized, although it is under consideration in the American Psychiatric Association's DSM-V.
When they reach the age of 18, an estimated 50 percent of those with fetal alcohol syndrome go on to have trouble with the law, according to recent articles published by the Harvard University journal, "Law and Psychiatry."
Many, like Ellie, have a normal IQ, but have poor executive-decision skills and maladaptive behavior.
"You are describing someone who doesn't understand right from wrong, doesn't learn from experience and is awkward in social situations," said Donaldson. "They act out."
The Gertz family first learned that Ellie had been exposed to alcohol in utero when the little girl was 3, after they received a letter from her uncle. Ellie's biological mother had abused crack cocaine, PCP, heroin and methamphetamine, but later doctors said alcohol had taken the greatest toll.
Ellie ran into traffic and hit her little sister Talia's head against the wall. She even attacked her school principal. To get Ellie the school services she needed, Gertz was able to get a diagnoses of bipolar and reactive attachment disorder.
But after exhausting all local resources in Illinois, the family was unable to afford the $160,000 a year for a residential treatment program, so Gertz entered into a third-party guardianship with the Washington couple.
"Our family was being destroyed," she told ABCNews.com last September, three months after Ellie had left.
The mother had fostered 150 children and has a teenage son with FASD. They continued to support Ellie financially, pay the couple a stipend and carried her on their health insurance policy.
At first she fared well, going to a Christian school with only six other children. But last spring, Ellie attacked a child and her teacher was forced to physically restrain her. A parent in an adjoining preschool filmed Ellie on her cell phone screaming, "They are trying to kill me," and called police.
Child Protective Services were called in to investigate both the school and Ellie's guardians, according to Gertz.
Gertz said she couldn't blame the mother for calling police, but no one checked her medical history.
"Here you have a child with a history of reporting [abuse] and it being unfounded," she said. "All they had to do was read the files and see the diagnostic stuff. They went right for the jugular."