"At the end of the year, we're going to all sit down and see what's next for Ellie and what's the next step," said Craig Gertz.
Lori Gertz decided to go public with her story because of the "shame and guilt" that she feels, unable to nurture the daughter she loves as much as her two biological children, Jonah, now 11, and Talia, 5.
"I could not be everything I promised to the child," she said.
She started a blog about FASD, and hopes to help others by sharing her journey with Ellie in a book, "Not of My Womb: Parenting the Legacy of an Addict."
"Doctors don't know what it looks like and the medical community is afraid to approach it," said Gertz. "God forbid the big alcohol companies got involved in saying it was bad when you are pregnant. One of the challenges is that nobody wants to admit they did something harmful to a child knowingly. You are creating a life -- you are a canister for a child. It's 100 percent preventable."
About 40,000 newborns a year are affected by FASD -- about 1 percent of all live births in the United States, according to the National Organization on Fetal Alcohol Syndrome (NOFAS). About 2 million adults are affected by FASD and alcohol-related neurodevelopment disorders.
"It's a significant health issue with a prevalence similar to autism," said NOFAS president Tom Donaldson.
Although it's the leading cause of birth defects and developmental disabilities, doctors are not well-trained in diagnosis. When they do see it, they are "not prepared to deal with it," he said.
According to the Centers for Disease Control and Prevention, about 125,000 women a year have serious alcohol problems throughout pregnancy.
A fetus is most vulnerable in the first trimester. The severity of the disorder can range from full-blown fetal alcohol syndrome, with facial deformities and neurological damage, to a spectrum of disorders like Ellie's.
How a child is affected is determined by both the timing and pattern of alcohol use.
Alcohol, like the carbon monoxide from cigarettes, passes easily through the placenta into the blood of a developing fetus, putting the child at risk for FASD. Because the fetus cannot break down the alcohol the way an adult can, its blood alcohol levels remain high for a longer period of time.
"Alcohol is a neurotoxin," said Donaldson. "Why would you want to ingest any amount?"
From the start, Ellie showed signs of FASD, though it would take almost three years to diagnose her. She was born shaking violently and had feeding difficulties and colic.
Later, she showed deficits in the executive functions of the brain, like impulse control and understanding cause and effect.
In her blog, Gertz describes a family outing when Ellie stepped off the curb and darted into traffic.
"I grabbed her and pulled her close in, that frightened way a parent does when they are scared and angry, and I said, 'What were you thinking?'" said Gertz. "She looked at me as though she was having a moment of not being able to process what she was hearing -- I called them 'blips' and they were often -- but she just stared at me and began to cry and say, 'I don't know mama, I don't know what I was thinking.'"