Kathy Mitchell wants to share something with you. She's not proud of it, and it's not a behavior she hopes you'll emulate. It's just the truth: As a teen, Kathy drank alcohol while pregnant with her daughter, Karli. It was a perilous if unwitting mistake that has defined both of their lives.
Karli is now 43 but is the developmental age of a first-grader. In the home she shares with her mother and stepfather, she collects dolls and purses, and pores over Hello Kitty coloring and sticker books. Karli has fetal alcohol syndrome, the result of alcohol exposure in utero.
In middle age, Karli has none of the awareness, self-determination and independence that most of us take for granted. She can't recognize social cues, is easily led and manipulated, and can't predict dangerous behaviors. She can only follow one rule at a time and doesn't understand sequence. She can cross a street at a lighted crosswalk, but if the light is out, she'll step in front of a car. She likes to wear pretty clothes, but she can't remember to brush her teeth.
To Kathy, Karli's is simply a life snuffed of promise. "I adore my very sweet daughter," Kathy says. "She's a forever innocent child. But not a day goes by that I don't ask myself, 'What if? What if alcohol hadn't been a part of my life?' "
Fetal alcohol spectrum disorder, or FASD, covers a range of impairments from severe, such as Karli's fetal alcohol syndrome, to mild. Its effects can include impaired growth, intellectual disabilities and such neurological, emotional and behavioral issues as attention-deficit hyperactivity disorder, vision problems and speech and language delays. FASD is also sometimes characterized by a cluster of facial features: small eyes, a thin upper lip and a flat philtrum (the ridge between the nose and upper lip).
And, as the Centers for Disease Control and Prevention put it, the disabilities "last a lifetime. There is no cure, though early intervention treatment can improve a child's development."
"In our family, though, [Karli] is a blessing," Kathy says.
"She brings joy to everyone she knows." But, she adds, "it breaks my heart to think about why Karli is disabled."
But Kathy says that rather than "sit in self-hatred and self-blame," she has made it her mission in life to tell the story of her and Karli so that others won't make the same mistakes.
"I believe I would be a terrible person if I didn't do everything in my power to prevent this from happening to another child."
Kathy's lengthy affair with alcohol was nearly a birthright. She grew up in Rockville, Md., the fifth child of seven in a family in which, she says, problems were barely acknowledged and rarely discussed. Especially the alcoholism that Kathy says was a part of her family history.
In 1964, when Kathy was 10, her parents opened a restaurant in Olney, Md., which they would own for the next 33 years.
Kathy and her siblings all helped in the business, which took on a nightclub atmosphere after 8 p.m. "Customers would come for dinner, then dance and drink all night. At 1 a.m. they'd be stumbling out to their cars to drive home," she says.
By the time she turned 12, Kathy had been drunk more than once -- and figured out that she liked the euphoria of intoxication. "Drinking made me feel grown-up, cuter, smarter, and helped me flow with the rest of the world," she says. In her chaotic, sibling-filled household, she was essentially an "invisible child," she says, with no one noticing her drinking.
Maid of honor at age 14 at her sister's wedding, Kathy remembers drinking beer after beer until, thoroughly intoxicated, she fled the scene -- before the wedding photographs were even taken. "It was just, like, 'Oh, that's Kathleen!' Looking back now, I can say that I was in the early stages of alcoholism by then, having blackouts. Everyone else was busy surviving and doing their own thing, and no one seemed to notice that I needed help."
In 10th grade, Kathy got pregnant. She married the baby's father -- a teenage boyfriend -- and dropped out of school. Their son was born a month after Kathy turned 17. The child was healthy and Kathy went back to waiting tables and tending bar. Nine months later she was pregnant again.
In those days, she recalls, people would say, "If you want to have a big fat baby, drink a beer a day" and "red wine is good for the baby's blood." Kathy again drank throughout her pregnancy, but usually just with friends. She'd put away a bottle of wine, or four to five beers, during a weekend.
Drinking wasn't her only risky behavior: "The fact is, I had poor nutrition, smoked cigarettes, worked in bars and drank alcohol. None of this was conducive to a healthy pregnancy."
In 1973, just a few months after turning 18, she gave birth to Karli.
That same year, researchers at the University of Washington Medical School published a landmark paper that described children with physical and intellectual disabilities whose mothers had drunk heavily throughout pregnancy. Alcohol was a teratogen, a substance that kills or damages developing cells, the researchers said, and then for the first time used term fetal alcohol syndrome to describe the result.
That information came too late to make a difference to Kathy or Karli.
From birth, Karli had been plagued by relatively minor health problems that didn't raise red flags at the pediatrician's office. When she failed to sit up on time and was slow to reach other milestones, doctors told Kathy that her baby had experienced delays because of her chronic ear infections.
Yet Karli's problems grew more pronounced as she aged. She exhibited fine and gross motor difficulties, poor joint mobility and speech delays. At one point, a doctor diagnosed cerebral palsy, one of the many disorders and conditions whose symptoms overlap with those of FASD. Later it became clear that Karli didn't have cerebral palsy, but "at that point it is more accurate to understand that the physician didn't even have FASD in his lineup," Kathy says. "Very few are trained to diagnose the disorder, and the number was even fewer back then. No one ever asked me about my alcohol use."
And Kathy continued to drink.
Meanwhile, her life grew more chaotic: evictions, job loss, divorce, illicit drug use and even suicidal thoughts. She gave birth to three more children, drinking throughout each pregnancy.
With her parents providing the bulk of care for Karli and her siblings, Kathy drifted in and out of jobs, apartments, motivation and despair. Her third child, a girl, was born healthy, but by the time she became pregnant with her fourth child, Kathy had added an addiction to heroin to the alcohol and cigarettes. Six months later the baby, a boy, died at birth. In 1982 she gave birth to her fifth child, a girl she named Keysha. The child stopped breathing in her crib at 10 weeks. When Kathy went in to wake the baby and found her lifeless, she had a psychological break.
"All I remember is screaming and screaming and screaming," Kathy says.
"I ended up being carted off by the police to a mental institution in Sykesville [Md.], where doctors decided that I was an addict, not insane, and I was sent off to an inpatient treatment center to detox."
As she recovered, she resolved to change her life. Therapy segued from a 30-day regimen at the inpatient facility into a 10-month stay in therapeutic community, during which time Kathy earned her GED. She moved back in with her parents, took evening courses and learned the basic skills of mothering. She was 30 years old.
Soon she was hired as a counselor's aide at Montgomery General Hospital's detox center in Maryland and became a certified addiction counselor.
Kathy first heard about the effects of cocaine on fetal development in 1988 at a professional conference about the crack-baby epidemic and realized that many of the symptoms of these babies seemed to fit with those of Karli's.
"I hadn't used crack cocaine while pregnant with Karli -- I'd only used alcohol -- so I wondered whether alcohol could have caused her problems. I'd never heard of that possibility before," she says.
Now a teenager, Karli lagged far behind her classmates in all ways. She couldn't tell time or ride a bicycle, and she couldn't understand money or abstract math concepts.
So in 1989, Kathy took Karli, then 16, to Georgetown University Hospital. After a battery of tests administered over a couple of days, Kathy sat down with a team of doctors and specialists to hear the verdict. The geneticist spoke first: "Your daughter does have fetal alcohol syndrome."
Kathy's pattern of alcohol use, with the occasional spiked levels of alcohol, he told her, "were associated with lifelong brain damage," Kathy recalls him saying.
"I thought I would die from the grief and guilt," she says.
"It was one of the worst days of my life, and at that moment I knew that I had to do what I could to prevent this from happening to another child."
Today Kathy, 61, is vice president of the National Organization on Fetal Alcohol Syndrome, a nonprofit that aims to increase awareness of the risks of alcohol use during pregnancy and its effect on families. She hopes that being public about her own history will help destigmatize the issue and maybe prevent another young mother from doing what she did.
FASD statistics are not definitive, but some recent research suggests that as many as 2 to 5 percent of children in the United States and some European countries might have some form of fetal alcohol spectrum disorder.
In October, the American Academy of Pediatrics reported that there is no known safe level of alcoholic consumption during any trimester of pregnancy. But, according to the CDC, 1 in 10 pregnant women acknowledge alcohol use -- "a risk that doesn't make sense to me at all," says Kenneth Jones, a professor of pediatrics at the University of California at San Diego who was co-author of the landmark 1973 study. Each fetus has individual risk factors, he continues, driven by the genetics of both parents as well as the mother's diet, so it's nearly impossible to determine how much alcoholis too much. "But why bother putting an amount on it?" he says. "Why risk your baby's future?"
For Kathy, "the guilt and remorse are painful, but it's even worse to think of what Karli might have been -- a nurse, like she wanted do be when she was 10, or a wife or mother? She won't have any of it now, because I drank during my pregnancies. I would never knowingly harm my child, but what I didn't know ended up robbing her of so much."
Karli's days are pleasant and full, framed by her devoted family. An aide helps her every day while Kathy and her husband are at work. Karli takes Zumba and water aerobics classes and goes grocery shopping, and every Friday she sees a matinee. She has a paid job one afternoon a week as a stock clerk, supported by a job coach, at a discount clothing store near her home in Olney. On weekends she participates in social activities through the Montgomery County Department of Therapeutic Recreation, which provides programs for people with disabilities.
Every night, Karli puts on some Hello Kitty pajamas. Kathy tucks her into bed with her two favorite dolls, Laura Liz and April. In the glow of a Tinker Bell night light near her bed, Karli smiles up at Kathy. "I love you, Mommy," she says.