© 2002 Teresa Kellerman
According to the World Health Organization, the incidence of Fetal Alcohol Syndrome (FAS) is approximately 1.9 per 1,000 live births worldwide. In some countries it occurs in 1 per 1,000 births; in other countries it could be as high as 3 per 1,000 births. The rate of Fetal Alcohol Effects (FAE) may be five times as common as FAS. Combining FAS and FAE, the rate of Fetal Alcohol Spectrum Disorders (FASD) is thought to affect one in every 100 births in the U.S. and Canada.
Regardless of what the specific rate is in any area, it is too high. FASD is theoretically 100% preventable. Wherever alcohol is freely consumed, alcohol related birth disorders are a major health problem with consequences that are costly to the individual, the family, and the community.
Efforts to promote healthier communities focus on primary, secondary, and tertiary prevention of the effects of prenatal exposure to alcohol. Primary prevention focuses on decreasing the overall rate of disabilities caused by prenatal exposure to alcohol. Secondary prevention focuses on minimizing the exposure to subsequent infants born to mothers who already have given birth to an affected child. Tertiary prevention focuses on the secondary disabilities seen in children and adults who were prenatally exposed to alcohol.
The solutions for primary, secondary, and tertiary prevention are as simple as 1-2-3. Primary prevention is achieved by simply not drinking during pregnancy. Secondary prevention, if a woman has already had a baby with FAS, might simply mean permanent or temporary sterilization, effective addiction treatment, or "confinement" during the period of pregnancy, all voluntary of course. Tertiary prevention can be achieved by ensuring each child born with FASD receives an early diagnosis, appropriate services, and a stable family life. But simple solutions are not always the easiest. As you will see, in each of these areas, we have numerous obstacles to overcome if we are to see successful prevention results.
It has been stated by many organizations that FAS is 100% preventable. However, I choose to state that it is theoretically 100% preventable. Of course, if all women abstained from alcohol during pregnancy, there would be no Fetal Alcohol Syndrome or Effects. But alcoholism and alcohol abuse will always be part of the human condition, especially in societies where alcohol use is encouraged as "healthy." The greater the society's acceptance of alcohol use in general, the greater the incidence of FASD.
Even if all women who knew they were pregnant were able to abstain during the rest of their pregnancies, most women do not know they are pregnant at the very time that alcohol can cause the greatest damage, from 2 to 8 weeks after conception. More than 50% of women of childbearing age drink alcohol. Most pregnancies are unplanned, therefore a large percentage of pregnant women consume alcohol before they realize they are pregnant. If primary prevention is to work, then ALL women of childbearing age who are not sterile and who might become sexually active must be encouraged to remain alcohol-free.
The World Health Organization (WHO) makes this statement: "The only efficient methods for the prevention of FAS involve public education, counseling and, in the extreme cases, detoxification."
WHO's Guidelines for Primary Prevention states that public education is the most efficient method for FAS prevention, which must involve community leaders, especially those working with women's groups, as well as teachers and journalists, who can disseminate the information provided by scientific studies and workers in the health field. Intervention counseling is needed for the more serious cases. WHO suggests that prevention activities be planned and implemented at the local level, facilitated by centralized coordination.
Organizations like the Arc, NOFAS, and March of Dimes have done a great deal to raise awareness about the dangers of drinking during pregnancy. But the most successful awareness efforts by far to date have been those spearheaded by internet-based FASWORLD, which celebrated the first International FAS Awareness Day on September 9, 1999, in eight different countries around the world.
While the Center for Disease Control and Prevention is counting heads to determine an accurate number to pin on FAS incidence, countless agencies across America are taking action in educating the public at all levels, starting with school children, working with prenatal clinics, and reaching beyond the pregnant woman to her family, her physician, and her peers. Before we see a change in behavior, we will need to encourage a change in attitude, not just the pregnant woman, but all women and men and children. Attitudes will be shaped through educational efforts such as those of the FAS Community Resource Center, which has raised awareness not only in Tucson, but all around the world.
The prevention projects that get adequate funding include those of the CDC, which is just counting heads at this point. There is little funding for the FAS Community Resource Center, and other such projects around the country. Even the Governor's Task Force on FAS, in a state that has been a leader in social action, was terminated when Arne Carlson left office. Former Minnesota First Lady Susan Carlson, who headed the Task Force, continues to work to raise awareness of FAS without funding. More money is put into prevention of HIV in children than into prevention of FAS, even though FAS is 20 times as common as HIV in newborns.
The Centers for Substance Abuse and Prevention (CSAP) and the Substance Abuse Mental Health Services Administration, both agencies of the U.S. Department of Health and Human Services, have announced a new FAS prevention partnership program. Their fact sheet states that the incidence of FAS may be as high as 12,000 new cases per year. To reduce FAS we need to seriously look at reducing alcohol consumption in general. The alcohol industry is a powerful industry and the alcohol lobby is well funded. Television is in many ways owned by the alcohol industry; even Children's Public Television is not untouched by the influence of alcohol.
In my opinion, the power of the alcohol industry combined with the apathy and denial of the American public are probably the two greatest obstacles to FAS prevention.
Although about 15% of pregnant women drink, only about 4% drink heavily. The women who drink "moderately" have a 10% risk of having a baby with FAS, but the baby of an alcoholic drinker has a 35% chance of having full FAS. And each baby after that has an increased risk of being seriously affected. There are some case studies included in the Institute of Medicine 1996 Report to Congress. The document is long and most of it is in PDF format, but it is an excellent study, and includes profiles of women who produce the most affected babies.
When we are looking at prevention of FAS in subsequent babies, we are talking about finding effective treatment programs. The Colorado University program can give you a long list of obstacles to recovery for the pregnant woman with an addiction. These obstacles are different from and more serious than obstacles for other people with addictions.
Besides finding treatment programs that work for the "normal" female addict, we need to look at how many of these pregnant women are affected by FAS or FAE themselves. Think about it. Who is more likely to get pregnant and drink during pregnancy? Women who have inherited the tendency toward alcoholism, whose own parents were probably drinkers. Women who "forget" to use birth control. Women who don't think about the consequences of their actions. Women who don't have a good hold of reality. For drinking pregnant women who are undiagnosed FAS or FAE, traditional treatment programs are not going to work. AA is not going to work. Psychotherapy is not going to work. Long-term treatment with close monitoring and follow-up with a mentor for perhaps two or three years is what will work. Along with helping to solve all the other peripheral problems that affect her ability to stay sober.
The obstacles to secondary prevention then are the large number of women of childbearing age who have undiagnosed FASD and the lack of effective treatment programs for pregnant addicts.
The third level of prevention focuses on persons already affected by prenatal exposure to alcohol, those with FAS and FAE, in the prevention of the secondary disabilities in adolescence and adulthood, as defined by Ann Streissguth in her report she unveiled in 1996. The primary disabilities of FAS are permanent and for the most part incurable: mental retardation, developmental delays, static encephalopathy (brain damage), hyperactivity, heart defects, visual impairment, and other alcohol related birth defects. The secondary disabilities are, however, totally preventable: mental illness, suspension and expulsion from school, trouble with the law, inappropriate sexual behavior, abuse of alcohol and other drugs, and difficulties with maintaining adequate employment and independence. While the secondary disabilities are far more devastating than the primary disabilities, the protective factors have been brought to light through Streissguth's studies: early recognition and diagnosis, eligibility for and procurement of appropriate support services, and stable long-term home environment.
In Streissguth's Report on Secondary Disabilities, she has even delineated a suggested formula to follow for successful prevention of secondary disabilities. All we need are programs to put the plan into action. If 94% of persons with FASD are being treated for mental health issues, and 60% are confined in a mental institution or prison, the cost of these secondary disabilities must be high, for the society that pays the bills, for the families who are attempting to care for these persons, and for the individuals themselves, who are often lost in the cracks of the system.
Tertiary prevention - applying known strategies to eliminate or at least minimize these secondary disabilities - would save taxpayers far more money than effective programs would cost. It is exciting to think that for every $1 spent on prevention today could save $2 on intervention later, and that affected people's lives could be saved from an otherwise devastating surmise, resulting in a healthier future for the community as a whole, and higher quality of life for persons living with FASD.
Educating the general public about the dangers of drinking during pregnancy, bringing about a greater awareness of FASD, will impact efforts in all three areas of FASD Prevention. A key target group would be our teens, especially those in junior high school, who are still forming values and figuring out life's priorities. In an effort to reach young people on their own terms, a video has been produced for teens about teens to teach about how alcohol affects a number of young people's lives, including a young man with Fetal Alcohol Syndrome. The video is called "FAS: Everybody's Baby" and is appropriate for all ages, is 35 minutes long, and is entertaining as well as educational. The video is called "FAS: Everybody's Baby" and is appropriate for all ages, is 35 mimnutes long, and is entertaining as well as educational. The video is available from The FAS Store and sales help a young man with FAS to realize his dream of succeeding at his own business in a special self-employment program. Meet John Kellerman, the star of the video, who devotes his free time to raising awareness in his community so that others in generations to come might escape the tribulations he has endured as a result of effects suffered from prenatal alcohol exposure.
John shares his prevention efforts in the international forum known as FASWORLD, where he joins with others from around the world to celebrate a new era of prevention through participation in FAS Awareness Day with others in his city and in communities everywhere. Prevention efforts today bring a Rainbow of Hope for all.
Last Update: September 20, 2002
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