Fetal Alcohol Syndrome

Last Christmas I talked with a pregnant woman drinking a cup of spiked eggnog.

“I’ve heard of fetal alcohol syndrome,” she said. “You have to be an alcoholic and pregnant for your baby to be born with it. Besides, my Ob/Gyn told me it is safe to drink alcohol during my pregnancy to relax, as long as I only drink occasionally.”

Her comment startled me. I realized how little many women know about the dangers of drinking alcohol when pregnant. Indeed, one study found that although nearly two-thirds of women had heard of fetal alcohol syndrome, 70 percent of them thought it meant an infant was born addicted to alcohol.

Fetal alcohol syndrome (FAS) is the most clinically recognizable form of a larger group of problems caused by prenatal alcohol consumption, termed fetal alcohol spectrum disorders (FASD), which also includes the more diagnostically elusive alcohol-related neurodevelopmental disorder (ARND). Children with FAS have some tell-tale facial anomalies, growth deficiencies and various levels of brain damage; behavioral and learning problems result, and the consequences are generally lifelong. ARND describes a similar behavioral and cognitive syndrome without the characteristic facial abnormalities or growth deficiencies of FAS. With fewer physical clues, diagnosis of ARND is more complicated; only a doctor who is an expert in ARND can determine whether a child’s behaviors or disabilities are alcohol-related.

Each year, as many as 40,000 babies in the U.S. are born with FASD—as many as one out of every 100 births—costing the nation about four billion dollars. Neurological and learning challenges range from severe to mild, and symptoms often resemble those for attention deficit hyperactivity disorder (ADHD). Children with FASD also have lower IQ—although only 25 percent of children who have FAS have mental retardation (IQ of 69 or under). A recent Michigan study focused on the IQ of 300 children who were followed from before birth to more than seven and a half years of age. For every two additional drinks per day consumed by a mother while pregnant, the child’s IQ dropped an average of three points. Children of mothers over the age of 30 who drank were most at risk of having a child with a lower IQ.

How Much Alcohol Is Safe to Drink When Pregnant?

While the medical literature has been clear for some time that there is no safe amount or period for alcohol consumption during pregnancy, some doctors have continued to suggest that limited use during later stages may not be harmful. Nevertheless, studies suggest even a single episode of consuming as little as two drinks may lead to loss of fetal brain cells (one drink = 12 ounces of beer, 5 ounces of wine or 1.5 ounces of hard liquor).

Recently, Surgeon General Richard Carmona urged national attention to the importance of complete abstinence during pregnancy. Said Dr. Carmona, “We must prevent all injury and illness that is preventable in society, and alcohol-related birth defects are completely preventable. We do not know what, if any, amount of alcohol is safe…When a pregnant woman drinks alcohol, so does her baby. Therefore, it’s in the best interest for a pregnant woman to simply not drink alcohol.” The Surgeon General also noted that despite public health advisories, significant numbers of women continue to drink during pregnancy. In a survey by the National Task Force on Fetal Alcohol Syndrome and Fetal Alcohol Effect, 10 percent of women aged 18 to 44 reported drinking during pregnancy, and two percent reported drinking in a binge fashion, with more than five drinks per episode.

The FASD syndromes are not hereditary; neuron damage and cell loss in the fetal brain occurs through the direct effects of alcohol as a toxin. Nevertheless, there seems to be a genetic predisposition to problem drinking, and how rapidly and completely a woman’s body breaks down alcohol depends to some extent on genetics. Whether from genetic or other factors, the risks for FASD are increased in women older than 30 years and women with low socioeconomic status. How Can Parents and Teachers Help?

FASD cannot be cured, but early intervention helps improve children’s learning and medical outcomes. Ideally children diagnosed or suspected of having FAS or ARND are referred to a multidisciplinary team including specialists such as a clinical geneticist, a developmental pediatrician, mental health professionals, social workers and educational specialists.

Treatment involves coordination of multiple community services. Social services can ensure a safe home environment and help parents learn what problems to expect and how to constructively respond to them, and special educational techniques may help children overcome learning problems.

Parents and teachers often struggle to understand the challenging or maladaptive behavior of children with FASD, and they need help learning effective management techniques for learning and behavior problems. The FAS Diagnostic and Prevention Network is currently evaluating an intervention model based on two complementary elements: 1) individualized, supportive behavioral consultation for parents and school staff of children with FAS/ARND and 2) a school-based social communication intervention provided directly to children with FAS/ARND that targets critical deficits in social communication and peer relations.

“Each child is as different as a tiny snowflake,” says Bonnie Buxton, author of the book

Damaged Angels and adoptive mother of a child diagnosed with ARND. However, some core problems result from damage to the frontal lobe and deeper structures of the brain, and these problems continue into adulthood. Areas most affected include organizational skills, social interaction, memory, perception and coordination.

Kate’s Story

Many children with FASD also experience sensory, developmental and medical problems. As an infant and toddler, Kate, who was later diagnosed with ARND, could not tolerate loud noises, bright lights or crowds. Her mother had to avoid these triggers so her daughter would not go into sensory overload. Kate could not even go to a grocery store without screaming. She also had developmental problems, such as delayed speech and difficulty learning how to roll over, crawl and walk. Learning the alphabet was a major hurdle, and she was never able to learn multiplication or cursive writing. But in terms of health, Kate was fortunate. Although she has a heart murmur and slight scoliosis, Kate had few medical problems beyond frequent earaches. (Ear infections are common in people who have FASD because the Eustachian tubes are poorly formed and the fluid does not drain out, leaving a perfect environment for infection.)

As Kate grew older, more difficulties arose. She had mood swings and rages and had trouble making and keeping friends. By the time she was nine years old, her impulses were so out of control that her doctor concluded she must have ADHD and prescribed Ritalin. The medication helped Kate with her impulse control and hyperactivity, but the other problems persisted. School became increasingly frustrating because she was unable to think abstractly. She also kept losing and forgetting things. Other children were progressing in school, and Kate knew that she could not keep up with them. Unfortunately, the origin of her problems was not known until she was 17 years old; interventions are thought to be most successful when started before the age of six.

Now 24, Kate is the mother of two children who have FAS. Despite the knowledge that alcohol was the cause of many of her own problems, she lacked the judgment or ability to abstain from alcohol during her pregnancies. After numerous parenting difficulties, Kate moved with her two daughters into her mother’s home.

Kate has held numerous jobs, but she has never lasted more than three months in a work situation. Her mother could not afford to support all of them, so she fought to get Social Security for Kate and the children. The process was complicated—Kate was applying for disability for mental health reasons, but FAS is a medical diagnosis, not a specific psychiatric one. Because neither FAS nor ARND is listed separately in the DSM-IV (the Diagnostic and Statistical Manual, Fourth Edition, the comprehensive guide categorizing psychiatric problems), Kate’s mother had to use her daughter’s ADHD diagnosis to help Kate qualify for Social Security. “If you don’t have a code in the DSM, you don’t exist,” she explained.

The good news is that Kate has been in recovery from alcoholism for almost a year, after going through a 12-step program. Stories like Kate’s are not inevitable, though. ARND can be prevented through awareness and education. And while brain damage cannot be cured, with early intervention, the outcome can be significantly improved.

by Susan Rose

Susan Rose is director of the Fetal Alcohol Syndrome Support Network of New York City and Long Island.

National Organization on Fetal Alcohol Syndrome
www.nofas.org

FAS Center for Excellence
www.fascenter.samhsa.gov

FAS Community Resource Center
www.come-over.to/FAS


Alcohol Treatment During Pregnancy

Most women who use alcohol during pregnancy are not intending to cause harm to their babies. Some are not aware of the severity of risk their drinking poses; others fully intend never to take another drink but lack a developed plan to overcome the powerful pull of addiction. Sadly, pregnant women may not feel safe asking for help because of fears of judgment from others or fears that they will lose custody of their children if they reveal their drinking problems. Several states consider alcohol or drug use during pregnancy a form of child abuse punishable by imprisonment or removal of the child after birth; such laws may identify children at risk of harm after birth, but they are thought to be ineffective in helping women with addiction stop using during pregnancy and they may even increase the risk of pregnancy complications by discouraging early prenatal care.

Several practical issues complicate alcohol treatment for pregnant women. Initial treatment is often most effective in residential treatment settings, but because of greater medical needs during pregnancy it is not uncommon for a pregnant woman to find that none of the treatment centers in her area accept pregnant clients. Also, women often have trouble entering residential treatment if they cannot arrange care for their other children; a handful of treatment centers across the country allow women to bring their children into treatment with them, but these programs are few and far between.

For women to achieve sustained recovery, alcohol abuse cannot be addressed in isolation from other emotional and domestic problems. Women who return to a partner who drinks or to a situation of domestic violence tend to relapse, so screening and intervention for these risk factors is important. Most studies have indicated that one in six women experiences violence during pregnancy.

Women with addiction problems have often experienced unusually high numbers of negative or traumatic life events. Many have exhausted their social support systems before they resort to professional treatment. One advantage of treatment is that it increases the number of social supports for women who have been isolated.

Because women with alcohol problems who are new parents face great emotional demands when attempting to remain substance-free, classes in parent-child relations, parenting skills and vocational training have become standard offerings in many programs.

Tips for giving up alcohol:

• Avoid situations where you usually drink, like parties or bars.

• Ask your health care provider about alcohol treatment programs in your area.

• Ask your partner, family and friends to help you stay away from alcohol.

• Join an Alcoholics Anonymous support group. AA provides support for anyone who is trying to cut back on drinking. Their telephone number is in the white pages or community service pages of your local telephone book.

by Gillian Friedman, MD

For help in finding treatment in your area, call 1.800.ALCOHOL or consult the online Substance Abuse Treatment Facility Locator at www.samhsa.gov

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