Saving Ellie: Battered Adoptive Parents Give Up Out-Of-Control Child

Little Ellie had fetal alcohol spectrum disorder.

BySusan Donaldson James
September 27, 2010, 5:54 PM

Sept. 27, 2010— -- Lori and Craig Gertz, parents from Long Grove, Ill., were faced with a heartbreaking and unimaginable choice: to keep their family together, or to give up one of their kids in order to protect the others.

Seven-year-old, adopted daughter Ellie was out of control, hurting her siblings and trying to hurt herself -- all because she was born with a condition called fetal alcohol spectrum disorder (FASD).

When Lori Gertz brought the eight pound adoptive newborn home from the hospital, she quickly noticed Ellie's inability to bond.

She was virtually impossible to soothe and would cry for hours, Gertz said. Touching and rocking only made Ellie worse. As she grew older, Ellie lashed out at anyone who would say no, and even pushed her mother -- then eight months pregnant -- down the stairs.

By the age of six, she'd had four psychiatric hospitalizations and made numerous suicide attempts.

"Last fall things really got pretty bad and she started to run into traffic with intent to kill herself," Gertz said on "Good Morning America" today. "The responsibility was solely on me to keep her from running into traffic."

Specialists began to recommend residential treatment. They worried that Ellie might one day fatally hurt her siblings.

So three months ago, the family did the unthinkable -- they sent their adoptive daughter, now 7, to Washington state to live with another family. They might have the expertise and emotional distance from the troubled child to cope with her.

"I just never, in my life, could imagine even associating with having to let my baby go," said Gertz, 47, a marketing specialist. "I will always love my Ellie."

"Our family was being destroyed," she said after seeing 38 specialists and spending hundreds of thousands of dollars to help Ellie. "Our savings is gone. We have paid out of our pocket everything to take care of our daughter."

Gertz was so stressed that Ellie could explode at a moment's notice, battering her little sister's Talia's head against the wall, that she was getting chest pains. "I had to watch Ellie like a hawk," she said.

Theirs is not an adoption-gone-wrong story. Gertz said she would adopt again in a heartbeat.

Instead, Ellie's lack of impulse control, inability to bond and neurological problems were diagnosed as having been caused by FASD -- a condition that affects as many children as autism, yet gets a fraction of the medical attention and resources.

The child's biological mother was an addict, but the worst of her vices -- crack cocaine, PCP, heroin and methamphetamine -- were nothing compared to the alcohol that had ravaged Ellie's developing brain in the first trimester of pregnancy.

"Even after all the drugs our birth mother did, it was the alcohol which left Ellie with the legacy she had," Gertz said on "GMA."

Lori Gertz and her husband Craig, a lawyer, have faced roadblocks at every turn, first diagnosing her condition and then getting support services.

And now, they have entered in to an arrangement called third-party guardianship, because they cannot afford the $160,000 a year for a residential treatment program.

They have handed over full control of Ellie's education and upbringing for a year, when the families will then make a final decision about her care.

"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."

Many Doctors Don't Know Fetal Alcohol Syndrome

"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.'"

Ellie was born in New Jersey in 2003. Gertz turned to private adoption after she suffered seven miscarriages after the birth of her son Jonah, then four. She went online to find the birth mother, who was eight months pregnant. Nothing in the medical records suggested the baby had been exposed to anything other than smoking -- a one-cigarette-a-day habit.

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.

Birth Mother's Brother Reveals Drug Abuse

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.

Studies have shown that treatment before the age of six can help children like Ellie control their behavior, saving society billions of dollars in the cost of having out-of-control children who endanger themselves and others.

But diagnosis is imprecise without a history of drinking, according to Bearer, who is doing studies to find markers for alcohol use among pregnant women.

"Not only are women reluctant to tell doctors, but doctors are reluctant to ask," she said. "They are never trained to ask in a non-threatening way and get a more truthful answer."

As for Ellie, her new family, 1,700 miles away from her adoptive parents, is a "handmade, God-sent solution," according to Gertz. "We were so desperate."

She is in a large family, younger than the last sibling by seven years, "so there is no one she can hurt," said Gertz.

The mother has fostered 150 children and has a teenage son with FASD.

"We are told [Ellie] is incredibly argumentative but not having the violent outbursts she was," said Gertz. "I couldn't be someone who could emotionally withdraw from her. This mother is experienced and comes into this with a new energy. I was beaten up and pushed down."

Gertz said her heart aches for Ellie, even though her daughter was more loving toward the "insignificant people" in her life than her family. "She would smile better at someone in the grocery store," she said.

Now, 5-year-old Talia and 11-year-old Jonah are blossoming. For the first time they are the focus of their parents' attention. The entire family is in grief therapy.

Gertz said she still has nightmares and constantly second-guesses her decision to let go of Ellie. But her husband's response is, "What about the rest of the family?"

"The other children were compromised," she said. "We had three birds in our nest, not one."

"I have come to accept that while she was very much my daughter, I was never her mother," said Gertz. "She never bonded with me. That's a hard pill to swallow."

"I couldn't be the kind of parent of my dreams," she said. "I could face the trauma, but I couldn't soothe the one I loved so deeply."

ABC News research specialist Nicholas Tucker contributed to this report.

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