She had facial anomalies at birth, but nobody thought they meant anything: a flat philtrum (the line between the nose and the upper lip), wide-set eyes, flaps inside her eyes, a small head size and low-set ears.
"No one who looked in the face of my beautiful rash-ravaged daughter suggested FASD to us," said her mother.
It wasn't until Ellie was two that they received a flurry of e-mails from the birth mother's brother, revealing her heavy drug habit. A year later, they learned that Ellie's birth mother had been in jail and committed suicide the day she was released.
In 2006, when Ellie was three, a doctor familiar with FASD -- the 39th specialist the family had seen-- diagnosed Ellie in "under five minutes," according to Gertz.
"She was really already as a 3-year-old completely out of control. She had behaviors that were disruptive. She would have sudden rages that came out of nowhere," said Dr. Ira J. Chasnoff, author of "The Mystery of Risk; Drugs, Alcohol, Pregnancy, and the Vulnerable Child." "Ellie also had a significant attachment disorder."
"We sat there like the earth stood still and the tears fell out of my eyes and my husband got so angry in the moment," she said. "She'd had drugs, but they were nothing compared to what alcohol had done with her brain."
In the first few years, Gertz went through eight nannies -- one quit the first day. They even hired a babysitter to take Jonah to school because Ellie would thrash so hard trying to get out of the car seat.
Eight weeks after Ellie entered first grade, she kicked the principal in the head. "She bit, spat and went AWOL," said Gertz.
By the time she was in grade school, Ellie had exhausted all support services at her local public school.
The family spent "hundreds of thousands of dollars" on 38 specialists and a myriad of antipsychotic drugs to help their daughter, but nothing helped.
"I tried pills and every sort of food and diet and doctors and specialists," she said. "But you can't medicate an organic disorder."
Ellie did reasonably well in preschool with early intervention services. But when she transitioned to first grade, the local school system determined how much federal funding the family could receive.
The biggest hurdle continues to be that FASD is not a diagnosable mental health disorder, as defined by the psychiatric Bible of psychiatry, the Diagnostic and Statistical Manual of Mental Disorders, edition IV.
There was no health impairment category that could define the help Ellie needed.
Had Ellie been born with brain damage or suffered a brain trauma in an accident, it would have been easier to obtain funding for a residential treatment center (RTC), according to Getz.
"There aren't many options," said Gertz. "We tried to get funding from the state and they said no. The school said no. No one wants to put a small child in an RTC. It's tragic."
Ellie had a reasonably high IQ, but in Illinois, "developmentally disabled" children entitled to funding must have an IQ of less than 85.
"The health care system is so flawed," said Gertz. "It's not meeting the needs of children."
Early intervention programs are can be critical for children with FASD, according to Dr. Cynthia Bearer, chief of neonatologist at University of Maryland School of Medicine and Medical Center.