Studies offer hope for alcohol-damaged kids

By Warren King
Seattle Times medical reporter

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Now new findings from University of Washington scientists offer some hope: Those diagnosed early with the disease and who grow up in a stable, nurturing home are much less likely to have the problems that plague so many.

"They can be successful in life, but they have special needs," said Ann Streissguth, who directed the research. "We need a community that is aware of that, and when that is understood from their birth on, it is so much better for them."

Streissguth, UW professor of psychiatry and behavioral sciences, and her colleagues found, from their interviews with caregivers, that children with early diagnoses and from stable homes were two to four times less likely to have some of the most-significant problems.

"My mother helped me find the strength I needed and not think ... my life is over because I have this diagnosis," said Sidney Guimont, a 29-year-old Bremerton woman whose mother worked hard to see that she achieved her potential despite fetal alcohol syndrome (FAS).

Many of the 415 patients in the study with fetal alcohol syndrome or a variation of it, fetal alcohol effect (FAE), had significant problems at some point in their lives: 61 percent were suspended or expelled from school or dropped out; 60 percent had trouble with the law; 50 percent were confined (imprisoned or in inpatient psychiatric or substance-abuse treatment); 49 percent had repeated inappropriate sexual behaviors; and 35 percent had alcohol or drug problems. The patients ranged in age from 6 to 51.

People with fetal alcohol syndrome or fetal alcohol effect are troubled by deficiencies in problem-solving and judgment. They have an average IQ of about 85, but a few have scores up to 120, and some are mentally retarded. Those with FAS also have certain facial characteristics, such as smaller eye openings, while those with FAE do not have most of the features. The features often are less noticeable as the person ages.

For more information on fetal alcohol syndrome Centers for Disease Control and Prevention: www.cdc.gov/ncbddd/fas National Institute on Alcohol Abuse and Alcoholism: www.niaaa.nih.gov/publications/brochure.htm University of Washington Fetal Alcohol and Drug Unit: depts.washington.edu/fadu/content.html

"They experience a lot of frustration in life," said Streissguth, a pioneer researcher in the field. "They have trouble learning from their experiences, and people become very angry with them."

The new research by Streissguth and her colleagues at the UW and the University of Michigan is the first to offer real hope to those whose brains were damaged by alcohol before they were born. Reported in today's edition of the Journal of Developmental and Behavioral Pediatrics, it is based on extensive "life history interviews" with caregivers or others close to the patients.

Streissguth and her colleague Helen Barr, a UW biostatistician, said the advantage of an early diagnosis is getting help to a child as soon as possible. Even in infancy, therapy can enable children to better respond to sensations and control volatile emotions.

"We're saying the sooner the diagnosis, the better," Streissguth said. "It helps them get started on a track in life where they can learn behavior patterns that will be compatible with their skills. And it sends a message to parents, so they can start advocating for them in the community."

Physicians, teachers and social workers, she said, should consider the possibility of FAS or FAE in young children with memory, attention or behavior problems. And a doctor should not be afraid to ask a mother if she drank alcohol during pregnancy.

Growing up in a stable, nurturing home is also critical to helping children with alcohol brain damage to do their best. Generally, Streissguth and Barr said, that means homes without the problems that often may stem from severe alcoholism: frequent moves, changing jobs, neglect, physical and sexual abuse, and repeated placements in foster care.

Guimont, the Bremerton woman with fetal alcohol syndrome, credits the dogged determination of her mother, Marceil Ten Eyck, with helping her attain success in life — a nine-year, continuing marriage and a cat-sitting business stemming from extensive experience in veterinary clinics.

"She was always there for me and made it very clear to me that I should let people know my strengths and weaknesses," said Guimont, who is married to a Navy man.

"She taught me to advocate for myself."

Guimont was born to Ten Eyck before the effects of drinking during pregnancy were widely known. Experts now advise women to avoid drinking any alcohol during pregnancy. Ten Eyck drank wine, as much as a bottle at time, while pregnant.

She didn't learn that fetal alcohol syndrome might be the problem until her daughter was 14. An older daughter, who lived for years with Ten Eyck's former husband, also was affected.

Before the diagnosis, Ten Eyck attributed her daughter's difficulties to the fact that she was born more than two months premature. Her difficulties were perplexing, said her mother.

Sometimes she remembered things — chores, information for a school test — and sometimes she didn't. She told "interesting lies" that made no sense — like holding up a dry toothbrush as evidence she had brushed her teeth. She had problems with arithmetic. She could not grasp abstract concepts.

Only after Ten Eyck quit drinking and began training in alcoholism counseling did she realize her daughters had been affected. No physician or counselor had ever thought to ask her if she had been drinking during pregnancy.

Ten Eyck helped her daughter through her frequent frustrations with life, through stormy teen years when she once attempted suicide. She helped her daughter understand that she had a birth defect but "should stand up proud and not see it as a stigma."

That meant Guimont explaining, on her own, to her teachers, employers and others that she learns in a different way than other people. In ninth grade, she wrote a letter that she gave to teachers throughout the rest of her school career. Teachers responded well with special help, and with a lot of work, she graduated from public high school with a 3.0 grade-point average.

Guimont said knowing her diagnosis of FAS ultimately helped her.

"Before the diagnosis, I always felt a sense that something was difficult for me, but I couldn't put my finger on it," she said. "I had struggled so much. I had a hard time remembering what I had learned."

Now Guimont is honest with herself about her limitations, about her need for quiet and relatively slow-paced work. She learned veterinary-technician skills through a job in a small veterinary hospital for cats in Virginia. But when moving back to this area, she turned down a similar job in a large cat hospital, preferring a less-demanding job there that would not invite frustration. Then moving again to Bremerton, she started her own cat-sitting business.

She does just fine, she says, helping run her home, helping pay the bills and confidently knowing why she is the way she is.

Her advice for others caring for people with fetal alcohol syndrome: "Give us space. ... Give us stable ground, like my Mom did. I always knew she was there. But at the same time, she didn't hold me back."

Warren King: 206-464-2247 or wking@seattletimes.com

Copyright © 2004 The Seattle Times Company

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