A handicap in hiding

Alcohol-exposed kids often ruled by impulse

Teaching FAS/FAE kids requires patience, understanding

Finding homes for alcohol-affected kids tough

Nurse opens heart, home to child savaged by booze

Five-year-old FAS victim Gabi Hoeft shares a quiet moment wither her adoptive mother, Mary Hoeft.

She calls them blank days.
Some days, Mary Hoeft's daughter remembers simple tasks, like how to pick up her toys and stack them in her toy box.
"Then there are those days where the information just disappears. It's like a blank-slate day," says Hoeft, of her 5-year-old adopted daughter, Gabriella.
Gabi was born at University Medical Center to two longtime street people. It was clear the infant had full-blown fetal alcohol syndrome. Immediately, Child Protective Services removed her from her parents and placed her in a foster home.
At 10 months, Gabi went to live with Hoeft. The 56-year-old retired pediatric nurse has been a foster mother for nearly 20 years, specializing in children with failure to thrive syndrome. She has cared for about 20 FAS babies.
Gabi had been in foster care with a family who wasn't familiar with the needs of FAS babies, and she came to Hoeft malnourished.
"She was 10 months old, and she weighed 10 pounds," said Hoeft.
In foster care, Gabi hadn't bonded with anyone, Hoeft said. "She hadn't been held or nurtured. She stayed away from me for a while."
State officials tried to find a family with the same ethnicity as Gabi, who is half African-American and half Native American.
"Nobody wanted her," Hoeft said of the fragile, badly damaged baby.
Hoeft, the divorced mother of three grown children, heard of this child nobody loved and thought she could help. "I made a commitment to adopt her before I brought her into my home."

Gabby Hoeft gazes up at a chart for her brother Donovan, which lists his medication schedule. Mary adopted Gabby in part because she thought Gabby and Donovan have similar medical problems, although Donovan does not have FAS.

The moment Hoeft saw the adorable child, she fell in love and knew Gabi was meant to be her daughter.
"I wanted to give her a sense of belonging, a sense of family," Hoeft said. "I didn't want her bouncing around the system."
When state officials could not find an African-American or Native American family willing to adopt an FAS child, Hoeft immediately began adoption proceedings.
Gabi's birth parents opposed the adoption and fought it in court. But on April 29, 1996, Gabi legally became Hoeft's daughter.
Hoeft worries about Gabi's survival in a confusing, sometimes heartless world. It saddens her to admit it, but it probably would have been better had Gabi not been born.
"Neurologically, she's very, very damaged," Hoeft said. "On the blank days, nothing clicks. Things she was able to do the day before, she suddenly can't do. If those blank days stay, she won't be able to make it on her own."

Eating is a struggle

This sweet victim of FAS will never be able to take care of herself. Her adoptive mother, worries about what will become of her after she's gone.

Gabi sits in her chair at the kitchen table, fiddling with the Cheerios on her plate and licking yogurt off a spoon.
Like many children with FAS, eating has been a struggle since the day she was born. At 31 pounds, she is rail thin.
"Gabi has absolutely no desire to eat," Hoeft said. "She simply has no desire for food."
So Hoeft makes sure every bite Gabi eats is loaded with as much nutrition and fat as possible. She stirs mashed avocado and softened cream cheese into foods, adding the fat Gabi needs for her damaged brain and tiny body.
When Gabi moved in with Hoeft, she was a "happy-go-lucky baby who rarely cried."
"She was too easy, really," Hoeft recalled. "She didn't demand anything, including food."
Doctors determined early in her life that Gabi was badly damaged.
She is microcephalic - her head and brain are too small. She is borderline mentally retarded and developmentally delayed. Before this year, she spoke little. Skills normally mastered by children much younger than she, such as potty training, remain out of reach.
Gabi's immune system is weak. She is plagued with sinus trouble and ear infections, a result of an improperly formed head.
And Gabi has incontinentia pigmenti, a rare cartilage deformity that could cause her to go blind and have severe joint and ligament problems. In the world, there are only 500 reported cases of the disease, which is apparently not related to FAS.
Despite her handicaps, Gabi was happy in her early days. She immediately formed an intense friendship with a foster child named Addi in Hoeft's home. Addi also was of mixed race and looked like Gabi.
"They were inseparable," Hoeft said. "People always thought they were twins."
But when Gabi was 2, the state removed Addi from the home and placed him with another foster family of the same race.
It's been two years since Gabi's best friend disappeared from her life. She misses him terribly.
"Since Addi left, Gabi's very emotionally fragile," Hoeft said. "I think she's afraid to trust me, because I let Addi go. She doesn't ask for hugs or kisses like she used to. Sometimes when I hug her, she doesn't want to be hugged. She used to cuddle, but she doesn't want to anymore. I miss that."

Friendships hard to keep

Gabi gets a checkup from Dr. Burris Duncan, in the pediatrics department of University Medical Center. Doctors monitor her growth closely.

A stranger has come to call, and Gabi is curious.
She picks up her favorite book and asks the visitor to read.
Climbing on the love seat, Gabi inches closer and closer until she presses up against the visitor's side. She peers through enormous glasses perched on her tiny nose, giggling at the brightly colored animals in her book.
Hoeft says her daughter has a difficult time making friends. "She has a hard time understanding boundaries," Hoeft said. "She wants to get into other kids' space. Fetal alcohol kids have a hard time keeping friends. They get too clingy."
Gabi is in school at Project ABLE in the morning and at Children's World day care in the afternoons. The Department of Economic Security's Department of Developmental Disabilities pays for the day care.
Project ABLE is for preschoolers with special needs. Gabi attends the day care program "So she's around regular kids," Hoeft said.
Hoeft knows it is time to start talking about critical issues with Gabi.
She worries that Gabi could destroy her life if she were to drink alcohol, and knows she must never drink. "She's an addict, and she always will be. She started out life drunk."
Hoeft also worries about Gabi having children of her own and hopes she will consider sterilization.
"She should not have children," Hoeft said, "and I just don't see her taking birth control pills regularly.
"Life for Gabi is going to be difficult enough without children," she added.
Hoeft worries about what might happen if she were to become disabled or die. She knows Gabi would never be able to live on her own.
With help from the Home of Their Own program, Hoeft bought a house on the Southeast Side. The state program keeps disabled people out of institutions. Hoeft received a low-interest loan and help with the down payment.
The house belongs to Gabi, her 17-year-old adopted brother, and a 3-year-old boy with Down syndrome whom Hoeft is adopting. If Hoeft were to become unable to care for the three, the state would provide care in the home.
"Gabi will be able to live here with support. They will never have to move. This is their home."
Hoeft is doing everything she can to help Gabi make it through life later.
"I'm afraid she will be very vulnerable as an adult," Hoeft said. "I'm hoping I can ensure she's going to get her needs met."

Gabi swings with her 17-year-old adoptive brother, Donovan, in the family's back yard.

On a swing set in her back yard, Gabi soars to the sky, kicking up her feet and screeching in delight.
"Look how high I am!" she yells out.
On the next swing is her adopted brother, Donovan, who has stuffed his large frame into a swing. The blind, autistic teen with cerebral palsy rocks gently back and forth, sipping apple juice from a plastic cup.
Gabi is happiest outside, where she can demonstrate her physical prowess and play with her dog, Frances, a retired trained guide dog.
"Gabi has the mobility of a 6-year-old," Hoeft said. "She could climb before she could sit up."
But cognitively, the fearless child has the skills of a 2 1/2-year-old.
"Gabi just doesn't understand consequences," Hoeft said.
Last New Year's Day, Gabi was playing in the back yard when she discovered the gate was open a crack. She slipped out and ran down the alley.
By the time she stopped running, she was seven blocks from home and hopelessly lost. Strangers came to her aid, but she couldn't tell them her name or where she lived. Luckily, Hoeft, who was searching the neighborhood, found the child.

Gabi uses sign language while reading a book with her mom.

Hoeft worries that Gabi's health and mental abilities will deteriorate. The child experienced her first brain seizures last winter. In an odd way, they are a blessing.
"If she continues having them, she's guaranteed services" by the state, Hoeft said.
Hoeft also worries that Gabi is hyperactive. She has great difficulty doing what is asked of her. "You need to speak in short sentences and give one-step directions."
Sleep is another troubling issue. Gabi's restlessness follows her to bed, where she flails about, crashing into the wall.
But Hoeft is used to missing sleep. She has cared for countless babies whose brains and bodies were invaded by drugs and alcohol in the womb. She has helped more newborns through withdrawal than she can remember.
"I say to the right-to-lifers, come and walk in my shoes and spend the night with these babies and see if it's right that they should be born," Hoeft said.
Hoeft believes that to prevent FAS and FAE, there must be places for pregnant women to go for help, places where they don't have to worry that the state will take their children.
"The ones that can't control it should get residential support to help them not drink," Hoeft said. "We should give them all the emotional support they need, but not allow any access to alcohol. The government should pay for rehabilitation. They pay so much to support FAS and FAE people after they're here."
While Hoeft is doing all she can, she knows Gabi will always be brain-damaged.
"I have my hopes she might provide the world with some great revelation that will make life better for others, but I also know life is going to be very hard for Gabi," Hoeft said. "She's going to have a lot of major issues to deal with. I worry about how she's going to make it."