THE VIRGINIAN-PILOT
Copyright (c) 1996, Landmark Communications, Inc.
DATE: Tuesday, February 27, 1996 TAG: 9602270034
SECTION: DAILY BREAK PAGE: E1 EDITION: FINAL
SOURCE: By DEBRA GORDON, STAFF WRITER
LENGTH: Long : 212 lines
LOCKS.
Shiny brass deadbolts decorate every bedroom door in the Lee family's sprawling ranch home in suburban Richmond. They are a symbol of the effect alcohol has had on this family - the alcohol someone they don't know drank more than 15 years ago.
For the Lees' adopted son Curtis, the alcohol that his birth mother drank while pregnant has marked him forever with three devastating letters: FAS.
Curtis, 15, has fetal alcohol syndrome, a condition he acknowledges with a shrug. The locks are necessary because he steals incessantly, his judgment and ability to differentiate between right and wrong severely impaired by his birth mother's drinking.
But locks can't keep Curtis out of the rest of the world. The malls where he shoplifts shamelessly. The psychiatric treatment centers where he invites and initiates sex with boys and girls.
After 15 years of watching her family ravaged by a hyperactive child who constantly lies, steals and is prone to dangerously violent behavior; after years of court dates and psychiatrist appointments; after spending more than $100,000 of her own money and maxing out the lifetime benefits of two insurance policies, Curtis' adoptive mother, Mary Ann Lee, is exhausted.
She's considered giving up custody of her son, as she did his sister. But instead of quitting, she's decided to fight one last battle against FAS. For the past two months, she's been lobbying the General Assembly to designate an Alcohol Related Birth Defects
Awareness Week. She's also organized what may be the state's only support group for FAS parents.
Her message is simple: A pregnant woman should not drink. Not an occasional glass of wine, not one or two beers on a hot summer night. Nothing.
Unless she wants to risk having locks on every door in her house, too.
Admonitions against pregnant women drinking can be found in the Old Testament: ``You shall conceive and bear a son. Therefore, beware, and drink no wine or strong drink. . . .'' (Judges:13).
But through much of modern times, physicians recommended that their pregnant patients relax with a glass of wine or a beer. Until relatively recently, premature labor was even halted by means of injecting an alcohol-based solution.
In 1968, the first published studies appeared in scientific literature documenting a recurring set of birth defects among children of mothers who drank.
In 1973, those symptoms were named: fetal alcohol syndrome.
By 1981, the connection between drinking and serious birth defects - including mental retardation and facial deformities - was so clear that the U.S. surgeon general recommended pregnant women not drink alcohol, a warning now required on all alcoholic beverage labels.
Ironically, the recognition of the connection between drinking and birth defects coincided with a substantial increase in the number of women who drank. As women entered the work force in increasing numbers in the 1970s and '80s, and became exposed to the same stresses men had been facing for years, they turned to the bottle for relief. And their babies suffered.
In 1993, the latest year for which figures are available, the Centers for Disease Control and Prevention estimated that one in 13 newborns was diagnosed with FAS - a six-fold increase over 1979's rate. Part of the reason could be an increase in diagnosis, the CDC said, but the findings also reflect a true increase in the number of infants with FAS.
Although the problem is garnering more publicity, many women still aren't listening. National studies show that 20 to 66 percent of pregnant women drink after learning they are pregnant.
Louise Floyd, chief of the CDC's fetal alcohol syndrome prevention section, says one reason some women ignore the warnings may be that there are still no definitive answers as to how much is safe to drink during pregnancy.
The American College of Obstetricians and Gynecologists recommends that pregnant women not drink at all. Yet, Floyd said, ``physicians may be informing their pregnant women that an occasional drink will not be harmful. . women that maybe this is actually OK.''
Another reason is lack of awareness.
``FAS is just still not an issue regularly talked about by OB-GYNS,'' said Patti Munter, president of the Washington-based, nonprofit National Organization on Fetal Alcohol Syndrome.
Only in the past five years, she said, have there been national public awareness campaigns about the dangers of alcohol use during pregnancy.
Too late for Curtis Lee.
Mary Ann Lee first spotted Curtis and his sister Dawn in church. The cute 2- and 3-year-old siblings immediately grabbed her heart. She'd already adopted one child, who was 7 at the time, and desperately wanted to give him a brother or sister.
All the Lees knew about the toddlers was that their mother was a drug addict and an alcoholic. The kids were being raised by their grandmother, who was in poor health and couldn't keep them. If the Lees adopted them, she could at least stay in touch.
The Lees fell in love with the children on their first visit and brought them home that very day.
Curtis and Dawn were typical toddlers, Mary Ann remembers. Into everything.
But the normalcy changed when they reached school age.
In Curtis' case, the boy couldn't sit still. Wouldn't follow directions. Eventually, he was kicked out of first grade.
Teachers said he was lazy. That he wouldn't do his work or follow directions. Socially, he was always in trouble, throwing sticks and rocks on the playground, getting into fights.
At age 5, he was diagnosed with attention deficit disorder, a common finding in children affected with FAS or its milder, sister diagnosis, fetal alcohol effect.
But the drugs commonly used to treat ADD had no effect on Curtis. And his behavior problems worsened, particularly as he reached adolescence.
He started running away. Stealing. Kicking the door if he wanted to go out of the house. One night when he was 12, he threatened Mary Ann with an ax when she refused to let him go out. He snuck money out of her purse.
And the lying. To his parents, the lying was the worst.
Lies about money. About where he got the cigarettes, lighters and other paraphernalia Mary Ann Lee found in his room. ``He just doesn't learn from cause and effect,'' she said, describing a common symptom in FAS adolescents.
In 1992, after a hospital stay and examination by a geneticist, the Lees got the diagnosis they had been seeking, yet dreading. Fetal alcohol syndrome.
They finally had an explanation for their son's unexplainable behavior. But it didn't make living with him any easier.
FAS and the less-debilitating FAE are diagnosed not through blood tests, but through observation.
``We deal with it almost every day here,'' says Dr. Thomas R. Montgomery, director of developmental disabilities at Children's Hospital of The King's Daughters in Norfolk.
In severe FAS cases, doctors can trace the pattern of a mother's drinking upon her newborn's face. The babies have wide-set, abnormally small eyes, low-set ears and a flattened bridge under their nose.
They are usually smaller at birth than most full-term infants and remain painfully thin and short throughout their lives.
Most, but not all, FAS children have borderline or below IQs, and many are classified as mentally retarded. In fact, FAS is the leading cause of mental retardation in children - surpassing Down syndrome and spina bifida.
``It's the only completely preventable cause of mental retardation we know of,'' Montgomery said.
Although not every child he sees has FAS, nearly every time he sees a child with developmental problems he asks: Did the mother drink during pregnancy?
And if she did, how much? And when?
Both questions determine the extent and type of damage an FAS or FAE child will likely incur.
Heavy drinking during the first trimester of pregnancy typically results in the facial deformities of FAS babies, and also affects the heart and brain. Drinking during the second trimester primarily affects brain structure and function. And third trimester drinking may stunt the baby's growth and cause brain and behavioral problems.
Certain facts are clear. Alcohol is definitely a ``teratogen'' - something that causes deformities in the developing fetus.
``But, like any other teratogen,'' Montgomery said, ``the effect of alcohol is not 100 percent.''
The best estimate, he said, is that 47 percent of the babies of women who were drinking heavily during their pregnancy will have FAS. That's less than half - but it's also the highest percentage of damage caused by any known teratogen.
The damage might be less for lighter drinkers, but that doesn't mean it's OK to have an occasional glass of wine. The CDC's Floyd said new studies are showing that the threshold of what women can safely drink is lower than previously thought.
``Maybe a drink a day carries some consequences,'' she said.
And those consequences carry through into adolescence, with medical studies showing that many FAS adolescents exhibit severe psychiatric problems.
In the case of Curtis and his 16-year-old sister Dawn, who has never officially been diagnosed with FAS, but who the Lees believe has the syndrome, those problems have driven both children out of the house.
The Lees relinquished custody of Dawn to the state last year after the girl threatened to kill her mother. She is currently in juvenile detention.
Curtis has also spent much of the past year in detention or group homes.
His last stint in detention ended in early January. He had been sentenced to 30 days for using tobacco, verbally abusing his mother and vandalism.
The experience, he said, wasn't too bad.
``I got to meet new people and learn a lot of stuff,'' he said nonchalantly during an interview a few days after he was released.
Ask him about his FAS and he dismisses the diagnosis with a wave of his hand. ``It's a disease,'' he said, ``but it don't mean nothin' to me. I have problems controlling my behavior, certain things make me angry, set me off.'
``I can't use FAS as a crutch because I know I'm doing wrong.''
His stint in juvenile detention taught him there are consequences for everything, he said, yet later in the conversation he said he'd probably steal again to get something he wanted.
``I've got itchy fingers,'' he said.
Unlike many FAS kids, Curtis is not mentally retarded. In fact, his mother said he has an above-average IQ. He reads - mostly mysteries - and is teaching himself shorthand. And he said he likes school because it gives him an excuse to get away from his parents.
He readily admits to the things his mother accuses him of: stealing, lying, threatening her. Calmly recounts the time he stole the communion cups from church. The time he knocked his mother down and his father threatened him with a gun.
And he barely flinches when his mother says how nice and peaceful it was over the holidays without him.
Does he still love his parents?
``Yeah,'' he mumbles.
And his mother says she still loves him and his sister.
``They're a part of you. You wanted children so bad; it's just like they're yours. But there's a part in there you can't take but so much. I feel sad because it's no fault of their own; but they're never going to live a normal life.'' MEMO: For information on the support group for FAS parents, call (804)
520-2201 or (804) 541-7795.
ILLUSTRATION: Color photo by Bill Tiernan
Mary Ann Lee and her adopted son Curtis, 15, who suffers from fetal
alcohol syndrome.
[SIDE BAR]
Facts about Fetal Alcohol Syndrome and Fetal Alcohol Effect:
For complete text, see microfilm
KEYWORDS: FETAL ALCOHOL SYNDROME FAS by CNB