Fetal Alcohol Syndrome
Fetal alcohol syndrome (FAS) is a constellation of behavioral, growth, and facial abnormalities resulting from prenatal alcohol exposure. Diagnosis is made by a specially trained physician and is based on the following criteria: growth deficiency; a pattern of distinct and specific facial abnormalities; and central nervous system (CNS) damage. In other cases, where there are no related physical findings, but a pattern of cognitive and behavioral deficits exist concurrent with confirmed prenatal alcohol exposure, a diagnosis of static encephalopathy may be given. Due to confusion, this term and fetal alcohol related conditions (FARC) are used in the place of fetal alcohol effects (FAE). The characteristics listed above and discussed later in this entry must occur in conjunction with confirmed maternal alcohol consumption. Racial, genetic, and familial influences must also be considered when such a diagnosis is made.
HISTORY
The term fetal alcohol syndrome was first used in 1973 to describe the physical problems seen in the offspring of alcoholic women. There have been admonitions against women drinking during PREGNANCY for literally thousands of years—in biblical verses and in the writing of the ancient Greeks. The physical and social implications of women drinking during pregnancy first became highly noticeable during the gin epidemic of the 1750s. At that time, gin became a cheap and easily accessible beverage among low-income women. It was noted that there was a correlation between women who were consuming large amounts of gin and problems among their offspring.
A formal study was conducted in the 1890s by an English physician named Sullivan. He identified the offspring of 120 female "drunkards" in the Liverpool jail and compared them to the children of their nondrinking female relatives. From this study, Sullivan noted a perinatal mortality rate that was two and one half times higher in the offspring of the female alcoholics.
In 1968, Dr. Paul Lemoine published a study on the children of women alcoholics in a French medical journal. This article did not receive much attention until the landmark articles published in the Lancet by Jones, Smith, Ulleland, and Streissguth in 1973. Since 1973, more than five thousand articles have been published detailing the effects of prenatal alcohol exposure from birth through middle age. There can be no doubt that alcohol is a powerful teratogen (causative agent in fetal malformations) with lifelong after-effects (sequelae).
DISTRIBUTION
The prevalence of FAS ranges widely from community to community and is determined by the number of women consuming alcohol in any particular community. It is estimated that FAS is now the leading cause of mental retardation in the United States, surpassing Down's syndrome and spina bifida. The prevalence estimates for FAS range from 1 in 600 to 1 in 750 births. However, few prevalence studies have been conducted and many experts have differing views as to the accuracy of the prevalence figures available. New Centers for Disease Control (CDC) studies suggest that drinking during pregnancy is actually on the increase, despite public-health information designed to prevent FAS. This trend may lead to a higher number of babies born with FAS/FARC.
PHYSICAL EFFECTS
Scientific research indicates the likelihood that there is no level of alcohol consumption guaranteed free from risk for any period during pregnancy. Individuals react very differently to alcohol and it is difficult, if not impossible, to predict which women will produce a child with FAS. The exception to this is the woman who has already given birth to a child with FAS or FAE. If this woman continues to drink at the same or an increased level, it is highly likely that her subsequent pregnancy will be affected to the same or a greater degree.
Drinking alcohol during pregnancy produces different effects, depending on when the alcohol is consumed. During the first trimester, there is a chance of major physical abnormalities and central nervous system (CNS) damage. During the second trimester, alcohol consumption leads to an increased rate of spontaneous abortion and CNS damage, as well as more subtle physical abnormalities. During the third trimester, alcohol consumption can lead to pre- and postnatal growth retardation and CNS damage. These characteristics are detailed below.
As was mentioned above, three major indices are used in diagnosing FAS. First are the common facial abnormalities: These include short palpebral (eye-slit) fissures; a long smooth philtrum (upper lip groove); and thin upper lip. Other common physical problems associated with prenatal alcohol use include cardiac (heart) malformations and defects; pectus excavatum (hollow at the lower part of the chest due to backward displacement of xiphoid cartilage); clinodactyly and camptodactyly (permanent curving or deflection of one or more fingers); fusion of the radius and ulna at the elbow; scoliosis (lateral curvature of the spine); kidney malformations; and cleft lip and palate.
Growth deficiency in FAS is noted in three parameters: height, weight, and head circumference. Many of the prepubescent patients experience growth retardation; they are generally short and skinny in appearance. Significant changes in weight are noted as the female patients enter puberty; although the growth deficiency remains in height and head circumference across the lifespan, the girls frequently gain weight and appear plump. The male patients seem to remain fairly short and slender until their late twenties or thirties.
CNS damage is frequently manifested in cognitive and memory deficits, sleep disturbances, developmental delays, hyperactivity/distractibility, a short attention span, an inability to understand cause and effect, lower levels of academic achievement, impulsivity, and difficulty in abstracting. The difficulties noted in infancy and early childhood are often precursors to psychosocial deficits in later life.
PSYCHOSOCIAL AND EDUCATIONAL ISSUES
Ages Birth to 5 Years.
Diagnosis of alcohol-related birth defects is possible at birth but many physicians are either not trained to identify FAS or do not consider it a possibility. Perinatal behavioral manifestations of FAS include the following: poor habituation, an exaggerated startle response, poor sleep/wake cycle, poor sucking response, and hyperactivity. Failure to thrive, alcohol withdrawal, and cardiac difficulties have become medical concerns frequently noted in this patient population.
Developmental delays in walking, talking, and toilet training are often observed. Concerns such as hyperactivity, irritability, difficulty in following directions, and the inability to adapt to changes are commonly reported. The damage done the brain makes it problematic for children with FAS to learn in a timely and consistent fashion. The more abstract the task, the more apparent this learning gap becomes, particularly as the child enters adolescence and then adulthood.
Recommended interventions at this age focus on the family as well as the child. Many children with FAS are removed from the care of the biological mother owing to abuse, neglect, and/or premature maternal death. Newborns and infants with FAS often have trouble feeding; when this is coupled with a mother who may be deeply involved in substance abuse(s) and not attentive to the needs of her infant, it can lead to medical crises. Therefore, it is necessary to provide the following services and interventions:
- Monitoring of health and medical concerns
- Safe, stable, structured residential placement with services provided to the mother, father, patient, and other family members, such as substance-abuse treatment and parenting training
- Directions given to the caregivers in a simple, concrete fashion, one at a time; directions given to the child in similar fashion
- Adaptation of the external environment to fit the child's level of ability to handle stimulation
- Setting by caregivers of appropriate goals and expectations for their child
- Respite care and ongoing support for care-givers
Ages 6 to 11 Years.
Some of the problems noted earlier, primarily health issues, become less severe as others become more severe—with greater implications for negative social functioning. These are hyperactivity, impulsivity, memory deficits, inappropriate sexual behavior, difficulty predicting and/or understanding the consequences of behavior, difficulties in abstracting abilities, and poor comprehension of social rules and expectations. Children with FAS may show decreasing ability to function in school as they get older. The abstracting deficits become more apparent when the child reaches the third and fourth grades and is expected to perform multiplication and division. A summation of suggested interventions at this stage include the following:
- Safe, stable, structured residential placement
- Establishment of reasonable expectations and goals
- Clear physical/behavioral limits and boundaries
- Establishment of reasonable expectations and goals
- Listing of chores and expectations in writing
- Structuring of leisure time and activities
- Education of parents, caregivers, and the patient regarding age-appropriate sexual and social development
- Appropriate educational placement that focuses on an activity-based curriculum, development of communication skills, development of appropriate behavior, and basic academic skills embedded with functional skills
Ages 12 to 17 Years.
Children with FAS have the same emotional needs as others this age. Adolescents with FAS may exhibit cognitive deficits, impulsivity, low motivation, lying, stealing, DEPRESSION, suicidal thoughts and attempts, and significant limitations in their adaptive behavior skills. Other concerns include faulty logic, pregnancy/fathering a child, and the loss of residential placement. Social deficits noted encompass financial/sexual exploitation and substance abuse. It is frequently difficult for people with FAS to articulate their feelings and needs. This is commonly the time when they reach their intellectual ceiling.
Despite these problems and deficits, adolescents with FAS should not be infantilized. In addition, this is commonly the time where they reach their academic ceiling. The following are some suggested interventions to help them reach their social, emotional, and adaptive potential:
- Changing the focus from academic to vocational and daily-living skills training
- Structuring of leisure time and activities, such as involvement in organized sports and social activities
- Education of the patients, parents, and care-givers regarding sexual development and the need for birth control or protection against sexual exploitation and sexually transmitted diseases (STDs)
- Planning for future vocational training and placements, financial needs, and residential placement
- Increasing responsibility based on the patient's skills, abilities, and interests
Ages 18 through Adulthood.
The problems, deficits, and difficulties seen prior to the age of 18 are precursors to those seen in young adulthood and middle age. An additional problem experienced by people with FAS is the increased expectations placed on them by others. Not only can people with FAS often not meet these expectations but their impulsivity and poor judgment have more serious consequences than during their younger years. Issues such as poor comprehension of social rules and expectations, aggressive and unpredictable behavior, and depression coupled with impulsivity, may lead to suicide attempts, antisocial behavior, hospitalization, and/or incarceration.
Other concerns noted in adults with FAS include social isolation and withdrawal; difficulties in finding and sustaining employment; poor financial management; problems accessing and paying for medical treatment or child care; and a need for help with social/sexual exploitation and unwanted pregnancy. The hyperactivity and distractibility seen in small children with FAS/FARC manifest in the adult not being able to learn job skills or to meet the requirements of many jobs. The following is a brief outline intended to help adults with FAS deal with problematic issues in a productive fashion:
- A guardianship for or systematic help with whatever funds may be received, since arithmetic skills in this population seldom exceed the third grade
- Subsidized residential placements to help ensure physical safety
- Medical coupons for care, along with birth-control planning
- Homebuilders or community housing to help them live as independently as possible
- Child-care and parenting classes, as needed
- Education to others about FAS, including its limitations and skills, to foster acceptance
- Long-term residential/vocational/psychosocial support for both the patient and/or care-givers
SUMMARY
FAS is a preventable birth defect; once it exists it has life-long consequences. Special programs involving planning for future vocational, educational, and residential needs should be implemented as early in childhood as possible. Education on the harmful effects of alcohol use, focusing on young women and men of childbearing years, is critical to help prevent, or at least reduce, this significant public-health problem.
(SEE ALSO: Addicted Babies; ; Attention Deficit Disorder; Conduct Disorder in Children; Fetus, Effects of Drugs on the; Pregnancy and Drug Dependence: Opioids and Cocaine)
BIBLIOGRAPHY
ABEL, E. L., & SOKOL, R. J. (1991). A revised conservative estimate of the incidence of fetal alcohol syndrome and its economic impact. Alcoholism: Clinical and Experimental Research, 25, 514-524.
ASTLEY, S. J., & CLARREN, S. K. (1995). A fetal alcohol syndrome screening tool. Alcoholism: Clinical and Experimental Research, 19, 1565-1571
CLARREN, S. K. (1981) Recognition of fetal alcohol syndrome. Journal of the American Medical Association, 245, 2436-2439.
DORRIS, M. (1989). The broken cord. New York: Harper& Row.
JONES, K. L., & SMITH, D. W. (1973). Recognition of the fetal alcohol syndrome in early infancy. Lancet, 2, 999-1001.
JONES, K. L., ET AL. (1973). Pattern of malformation in offspring of chronic alcoholic mothers. Lancet, 1, 1267-1271.
LADUE, R. A. (1993). Psychosocial needs associated with fetal alcohol syndrome. Seattle: Fetal Alcohol and Drug Unit, University of Washington.
MALBIN, D. (1993). Fetal alcohol syndrome: Fetal alcohol effects. Center City, MN: Hazelden.
MAY, P. A., ET AL. (1983). Epidemiology of fetal alcohol syndrome among American Indians of the Southwest. Social Biology, 30, 374-387.
OLSON, H. C., BURGESS, D. M., & STREISSGUTH, A. P. (1992). Fetal alcohol syndrome and fetal alcohol effects: A lifespan view with implications for early intervention. Zero to Three, 13, 24-29.
STREISSGUTH, A. P. (1991). What every community should know about drinking during pregnancy and the lifelong consequences for society. Substance Abuse, 12, 114-127.
STREISSGUTH, A. P., ET AL. (1991). Fetal alcohol syndrome in adolescents and adults. Journal of the American Medical Association, 265, 1961-1967.
STREISSGUTH, A. P., BARR, H. M., KOGAN, J., & BOOKSTEIN, F. L. (1996). Understanding the occurrence of secondary disabilities in clients with fetal alcohol syndrome and fetal alcohol effects. Seattle: University of Washington.
STREISSGUTH, A. P., LA DUE, R. A., & RANDELS, S. P. (1988). A manual on adolescents and adults with fetal alcohol syndrome with special reference to American Indians. Washington. D.C.: US Department of Health and Human Services.
STREISSGUTH, A. P., SAMPSON, P. D., & BARR, H. M. (1989). Neurobehavioral dose-response effects of prenatal alcohol exposure in humans from infancy to adulthood. In D. E. Hutchings (Ed.), Prenatal abuse of licit and illicit drugs. New York: Annals of the New York Academy of Sciences.
ROBIN A. LADUE
