The lasting impact of fetal alcohol syndrome and fetal alcohol effect on children and adolescents

n

The lasting Impact of Fetal Alcohol Syndrome and Fetal Alcohol Effect on Children and Adolescents Colleen

H. Smitherman,

n

RN, PhD

The estimate is that thousands of infants are born each year with fetal alcohol syndrome (FAS) or fetal alcohol effect (FAE). The nursing literature has frequently treated FAS/FAE as something that happens only to infants; the effects of FAS/FAE do not end during infancy but persist into childhood, adolescence, and throughout adulthood. It is possible that many children and adolescents who have FAS or FAE are frequently seen by health care professionals for various reasons, but the fact that they have FAS/FAE may not be recognized. As a result, these children and their caretakers may not receive the care and counseling they need. This article describes how FAS/FAE occurs; how it may be recognized; the potentially devastating effects it can have on children, adolescents, and their caretakers; and how FAS/FAE can be prevented. J PEDIATR HEALTH CARE (1994). 8, 121-126.

A

considerable amount of attention has focused on the consequences of prenatal exposure of infants to drugs such as cocaine, but the most commonly abused substance prenatally is alcohol. One of six women of childbearing age may habitually or occasionally drink enough to harm an unborn child (National Institute on Alcohol Abuse and Alcoholism [NIAAA] 1987). The conditions that result from prenatal alcohol exposure are fetal alcohol syndrome (FAS) and fetal alcohol effect (FW. FETAL ALCOHOL SYNDROME AND FETAL ALCOHOL EFFECT

n

FAS and FAE occur when a fetus is exposed to toxic levels of alcohol. FAS is a severe condition with obvious physical defects and alterations in the central nervous system (CNS) . FAE is milder with fewer anomalies but with significant CNS alterations that may not be obvious until the child is older. The incidence of FAS is estimated to be 1 to 3 per 1,000 live births, with FAE occurring more frequently (NIAAA, 1987). Black infants are at higher risk than white infants (Chavez, Cordero, & Beccerra, 1988), and a rate of 1 per 100 live

births has been found in one native American population (May & Hymbaugh, 1982 11983). The conditions of exposure to alcohol during pregnancy that produce FAS/FAE are uncertain. The brain is one of the first organs to begin development and one of the last to be completed. Drinking alcohol at any time during gestation is probably harmful (Davis, Partridge, & Storrs, 1982). Mothers should also avoid alcohol while nursing because alcohol is secreted in breast milk and vital brain growth continues after birth (Olson, Burgess, & Streissguth, 1992). Alcohol may concentration in the fetal brain altering metabolism, oxygenation, or hydration of tissue with damage occurring to the hypothalamus or the hippocampus, which are involved in memory and learning (Abel, 1985; Weiner & Morse, 1991). Alcohol levels persist longer in fetuses than in others because of fetal liver immaturity. Continued heavy drinking or habitual binge drinking during pregnancy causes the most CNS damage. Other mediating factors may be maternal metabolism, age, ethnicity, diet, tobacco use, caffeine intake, and type of alcohol (Dorris, 1989; Sokol, 1984). Combining alcohol with abuse of other substances during pregnancy may produce a confusing array of effects about which little is known. The Diagnosis

Colleen H. Smitherman, RN, PhD, is an associate professor School of Nursing, Grand Valley State University in Allendale,

at the Kirkhof Michigan.

Reprint requests: Colleen H. Smitherman, RN, PhD, Associate Professor, Kirkhof School of Nursing, Grand Valley State University, 1 Campus Drive, Allendale, MI 49401. Copyright 0 1994 by the National & Practitioners. 0891-5245/94/$3.00

JOURNAL

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Association

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OF PEDIATRIC

HEALTH

CARE

Nurse Associates

of FAS/FAE

The diagnosis of FAS/FAE is based on a coalescence of evidence because no definitive test exists. Criteria for FAS (Table 1) include facial dysmorphology, growth retardation, CNS involvement, and a history of drinking during pregnancy. The features of FAS/FAE can occur in other syndromes, in normal children, and normally in some races. Exactly how FASIFAE is expressed is 121

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5 TABLE

1 Diagnostic CATEGORY

Growth

retardation

Central nervous involvement

Facial

Maternal

system

dysmorphology

history

categories for FAS*/FAEt -....__.- I. TYPICAL FEATURES -..--.-_-__----I Low birth weight Failure to thrive Short and thin for age Reduced head circumference Developmental delay Intellectual impairment Poor motor control Attentional deficits Hyperactivity Muscular weakness Underdeveloped philtrum (groove in upper lip) Thin upper lip Fiat midface Short or upturned nose Low nasal bridge Ear anomalies Short palpebral fissures Epicanthal folds History of alcohol abuse during pregnancy

*Characteristics in each category. tSome but not all of the characteristics to warrant a full dtagnosis. Sources. Rosett & Weiner, 1984; Streissguth. LaDue. & Randels. 1988

modified by the environmental and intellectual abilities of the child. Box 1 shows other symptoms associated with FAUFAE. The most common expression of FAS/FAE, and the most likely to be undiagnosed, is the mildly affected child who has low to average intelligence, hardly noticeable lags, and facial attributes that may look abnormal only to experienced observers (Weiner & Morse, 1991). FASIFAE in Infancy A 100% failure rate at diagnosing FAS in newborns has been found (Little, Snell, & Rosenfeld, 1990) possibly because most effects are vague. If the mother drank before labor, the amniotic fluid may smell of stale alcohol. The infant with FAS/ FAEZ will usually have a birth weight below the 10th percentile and a belownormal length and occipital-frontal circumference (Rosett & Weiner, 1984). Infants with FASIFAE are irritable and tremulous, cry excessively, overreact to sounds, sleep poorly, and have poor muscle tone (Streissguth, LaDue, & Randels, 1988). Failure to thrive is the most common primary complaint (Weiner & Morse, 1991). Some also have seizure disorders or congenital defects (Rosett & Weiner, 1984). Table 2 lists other conditions that are associated with FAS /FAE.

n

_--.

TABLE

2 Conditions

associated _----_----

with

FEATURES

CONDITION Physical deficits

Sensory

anomalies

Developmental behavioral

or

Low birth weight, failure to thrive Scoliosi5 Pectus excavatum Clubfoot Radioulnar synostosis Clinodactyly, short 5th finger, camptodactyly Epilepsy Malaligned, malformed teeth Atrial and ventricular septal defects Cleft lip and/or palate Cerebral palsy Hydrocephalus Hemangiomas Hirsutism Renal or hepatic defects Coccygeal fovea Embryonic Frequent Hearing Strabismus

deficits

or problems

FAS/FAE

tumors infections impairment

Ptosis Visual impairment Microcephaly Developmental delays Attentional deficits Hyperactivity Inappropriate sexual behavior Passivity, apathy Poor judgment Impulsiveness Poor use of time Academic underachievement Delinquency Alcohol or other substance abuse

Sources: Aronson & Olegard, 1985; Dorris, 1989; Rosett & Weiner, Spohr b; Steinhausen, 1984; Streissguth, LaDue, & Randels, 1988.

1984;

The average child with FASIFAE lives with the birth-mother less than 4 years (Streissguth, LaDue, & Randels, 1988), and 75% of mothers who gave birth to children with FAS /FAE have been found to be missing or known dead within 5 years (Rosett & Weiner, 1984). If reared by an alcoholic mother, neglect may be observable. Most infants with FAS/FAE are placed in other homes.

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Care

Smitherman

n

BOX 1 MOST 4IX3MMON

PHYSKIAJ.

FINDINGS

ASSOCIATED

123

WITH FA!S/FAE Mostcommon m

Diminished IQ Mierocephaiy Philtrum (groove in upper Sip): underdeveloped, absent Retrognathia @osteriorly displaced jaw) Prenatal or postnasal growth deficiency Teeth: malformed, malocclusion, absent enamel Lips: thin, wide Hyperactivity Upper vermilion: thin, absent cupids bow Eyes: ptosis, strabismus, slanting Epicanthal folds Abnormal hair/head shape Hypertonia Fingers: clinodactyly, camptodactyly, small nails Nose: bridge, flat, high nasal tip, short Coccygeal fovea Ears: malformed, small, large, rotated, prominent Palms: single crease, unusual crease Back/neck/spine defects Mid-face hypoplasia

V

Least common sarms:

spdlr

& steinbausen,

1984;

su,

uhle

I

RsnMs,

1988.

FASIFAE in Young Children By early childhood, the child with FAS I FAE has deficits such as short attention span, clumsiness, distractibility, and hyperactivity, which may or may not be very obvious. “Fidgety” mealtime behavior is very typical (Landesman-Dwyer, Ragozin, & Little, 1981) as is lack of caution with strangers (Streissguth et al., 1988). The child is slender with little fat and may have muscular weakness (Aronson & Olegard, 1985). Physical problems such as malaligned teeth and hearing and visual deficits may be noted (Olson et al., 1992). Caretakers of young children with FAS /FAE ofien relate problems such as phobias, tantrums, noncompliance, emotional instability, and fighting (Spohr & Steinhausen, 1984), but most derive pleasure from their children at this age and portray them as spontaneous, gregarious, lovable, and affectionate (Streissguth et al., 1988). FAWFAE in Older Children When the child with FAS/FAE reaches school age, the facial attributes become less observable (Spohr & Steinhausen, 1987). Academic functioning usually peaks around grades 6 to 8. The average IQ for children with FAS /FAE is 70 to 90 (Weiner & Morse, 1991), but some score as high as 105 (Streissguth et al., 1988).

Arithmetic and language deficits are frequent (Becker, Warr-Leeper, & Leeper, 1990; Streissguth et al, 1988). Children with FASIFAE continue to be naive, which makes them increasingly prone to victimization (Dorris, 1989). FASIFAE in Adolescents and Young Adults In the adolescent, the facial attributes of FAS/FAE are ofien unremarkable (Abel, 1985). Early photographs may provide the only clues to this syndrome. However, small stature and head circumference persist. The most typical characteristics are behavioral ones that compose atan “FAS profile.” This profile is the most ticult tribute of FAS/FAE and has more impact on the individual and family than physical ones (Dorris, 1989). The FAS profile has been condensed in the phrase “poor judgment.” Even the mildly affected adolescent with FAE with a higher IQ still displays the profile. Adolescents with the FAS profile act impulsively, repeat mistakes, do not consider consequences, are inattentive, and are eager to take risks. They use time poorly, are careless of possessions, lie easily, and demand immediate gratification. They may be passive and sullen and neglect their appearance. Deficits occur in abstract thinking, shown in tasks such as telling complex stories or writing descriptive letters (Olson et al., 1992). They

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National Cåhouse for Alcoholand Drug Information, PO Box 2345, Rockville, MD 20852. National institute on Alcohol Abuse and Alcoholism, 5600 Fishers Lane, Rockville, MD 20857. Clearinghouse for DrugExposed Chitdren, Division of Behavioral and Developmental Pediatrics, University of California, San Francisco, 400 Parr&us Avenue, Room A203, San Francisco, CA 94143-0314. Fetal Alcohol and Drug Unit, University of Washington School of Medicine, Department of Psychiatry and Behavioral Sciences, 2707 Northeast Btakeley Street, Seattle, WA 98105. National Organization of FAS INOFAS), 1815 H Street N.W., Suite 750; Washington, DC 20006. A Manual on adolescents an&adults with fetal alcohol syndrome with special reference to American Indians by A. P. Streissguth, R. A. LaDue & S. P. Randels. Available from Indian Health Service, Attention: Lisa Snyder, M.H.R., Headquarters West, 300 San Mateo, N.E., Suite 500, Albuquerque, NM 87108. ICEBERG Newsletter. For families and professionals involved with FAS/FAE ($1 S.OO/year). Available from PO Box 4292, Seattle WA 98104.

have an unrealistic view of what they will accomplish someday, and realistic planning and action rarely occurs. Because reasoning and judgment abilities plateau at around 14 to 16 years of age, the adolescent with FAS/FAE needs the supervision typically given a much younger child. Most adolescents with FAS/ FAE are unwilling to accept such intense supervision. A study of 6 1 teens and young adults with FAS / FAE found that only one could handle money, none could manage J checking account, only one was employed full time, none were self-supporting, and some engaged in sexual abuse of children and pets (Streissguth et al., 1988). Older teens, often avoided by former friends, can become lonely and depressed. Ironically, attributes of the FAS profile, such as impulsivity and restlessness, are associated with a predisposition to alcohol abuse (Rydelius, 1985), which can lead to generation after generation of children with FASIFAE. Some caretakers unrealistically believe their children will eventually become more mature, live normally, and support themselves, which is quite unlikely. Adolescents with mild to moderate undiagnosed FAS/FAE often cause the most profound difficulties for their families because the reason for their inadequacies is hidden. The more seriously affected adolescents arc identified and usually are accepted earlier (Streissguth et al., 1988). . AREAS FOR NURSING ACTION Primary Prevention *Although there is no cure for FAS/FAE, it is totally preventable. Many individuals may be unaware of the dangers of drinking during pregnancy. One third of those questioned in a study thought a pregnant woman could safely drink over three drinks per day (NIAAA. 1987). Indeed, some physicians have encouraged alcohol consumption during pregnancy and breast feeding in the belief that it was beneficial. As recently as

1975, an edition of The Pbarmacoh~icd Bask of Therapeutics stated that alcohol was harmless to the fetus (Goodman & Gilman, 1975). Educational efforts and warnings about alcohol directed at young women are needed. Identification

of Pregnant Alcohol-abusing

Women

Alcohol use does not appear to be a topic commonly discussed with pregnant women (Olson et al., 1992). Women who use alcohol indiscriminantly and may not know thev are pregnant or those who react to the stresses of pregnancy with increased drinking are especially at risk. Screening with alcohol assessment tests should be part of every history. Women who can reduce alcohol consumption even midway through pregnancy have infants with fewer effects (Rosett, Weiner, & Edelin, 1983). Early Casefinding of Children with FAS/FAE Achieving the earliest possible diagnosis of FAS/FAE is important. Because neurologic development continues after birth, ample nutrition, health care, and nurturance may prevent damage that might occur if the child is neglected. Also more services are available for younger children than older ones. Early casefinding can help avoid the frustrations of those who have reared a child with undiagnosed FASIFAE. Nurses should be alert to signs of FASIFAE in children with the conditions given in Table 2 and especially in foster and adopted children. (See Box 2 for resources on FAS / FAE for health professionals.) Referral of Children to Appropriate

Resources

Children with FAS/FAE need early intervention (Weiner & Morse, 1991) that focuses on care techniques, monitors health status and home environment, suggests alterations in care, and uncovers treatable problems such as hyperactivity, learning disabilities, and con-

Journal of Pediatric May-June 1994

Health Care

duct disorders. One FAS clinic now gives pharmacologic agents to control behaviors such as hyperactivity or aggression, although drugs cannot cure FAS (R. ten Bensel, personal communication, October 2, 1992). Counseling for Young Adults

Young adults with FAS/FAE cannot look forward to a normal life. Attributes such as impulsivity, untrnthfulness, and passivity combined with restlessness and impaired cognitive abilities create barriers to achieving a functional lifestyle as indexed by stable employment, lasting relationships, sound money management, care of possessions, and productive use of time. Math ability, which may correlate with cognitive abilities, may be the best predictor of the individual’s ability to live independently. Young adults need services to help monitor money management and work and living arrangements. Vocational training is sometimes possible. Suicide is a concern for those who become despondent and isolated, and birth control and prevention of sexually transmitted diseases are concerns for the sexually active (Streissguth et al., 1988). Treatment for alcohol dependency or substance abuse, if it occurs, can be very difficult but must be attempted. Counseling and Referral of Caretakers to Supportive Services

Caretakers can learn specific interventions based on the age and needs of the child and can be helped to see that their child’s behaviors are not malicious but rather signs of CNS dysfunction (Olson et al., 1992). All caretakers, whether adoptive, biologic, or foster, can benefit from referrals for support groups, respite care centers, or counseling.

N

urses who view the mother as a victim of an addictive syndrome and not as malevolent will be most helpful.

If the caretaker is the biologic mother, the guilt she experiences can be unrelenting. Nurses who view the mother as the victim of an addictive syndrome and not as malevolent will be most helpful. Adoptive parents have different needs. Commenting on the quandary of adoptive parents unaware of FAS/FAE, Dorris (1989) remarked that “. . . a disproportionate number of men and women who had adopted children from troubled backgrounds-alcohol or drug abuse, especially-and who had raised them in all variety of environments . . . were experiencing a uniform set of problems as their children got older. Often these parents found themselves applying in desperation to the same special education boarding schools, searching the same self-

Smitherman

125

help books for answers” (p. 231). When adoptive parents learn that their child has FAS /FAR, the burdens they have been carrying may be lessened, but they may need help dealing with the anger they feel toward the birth parents or the adoption agency. Areas for Nursing Research

Both qualitative and quantitative research on FAS / FAE is needed on a wide variety of topics such as women’s attitudes about alcohol, programs to reduce alcohol consumption, and the impact of FAS/FAE on individuals, families, and communities. n

SUMMARY

FAS / FAR can have profound and lasting effects on children Nurses should be alert to the physical and behavioral attributes associated with FASIFAE, engage in efforts to detect FAS/FAE, provide relevent services and referrals to affected children and their caretakers, and promote the prevention of FAS/FAE as a high priority. n REFERENCES Abel,

E. L. (1985). Late sequelae of fetal alcohol syndrome. In U. Ryberg, C. Ailing, & J. Engel (Eds.), Alcohol and the dhekping brain (pp. 125-133). New York: Raven. Aronson, M., & Olegard, R. (1985). Fetal alcohol effects in pediatrics and child psychology. In U. Ryberg, C. Ailing, & J. Engel (Eds.), Alcohol and the abeloping brain (pp. 135-145). New York: Raven. Becker, M., Warr-Leeper, G. A., & Leeper, H. A. (1990). Fetal alcohol syndrome: A description of oral motor, articulatory, short term memory, grammatical, and semantic abihties.Joournal @Cornmunication D&rdeq 23, 97-124. Chavez, G. F., Cordero, J. F., & Beccerra, J. E. (1988). Leading major congenital malformations among minority groups in the United States, 1981-1986. Journal of the American Medical Associutim, 261, 205-209. Davis, P. J., Partridge, J. W., & Storrs, C. N. (1982). Alcohol consumption in pregnancy: How much is safe? Archives of Disabled Children, 57, 940-943. Dorris, M. (1989). The &roken cord. New York: Harper & Row. Goodman, L. M., & Gilman, A. (1975). Tbephamzacological basasic$ tberupeutim New York: Macmillan. Landesman-Dwyer, S., Ragozin, A. S., & Little, R. E. (1981). Behavioral correlates of prenatal alcohol exposure: A four-year follow-up study. Neurobehaviurai Toxim@y and TeratoloBv, 3, 187193. Little, B. B., Snell, L. M., & Rosenfeld, C. R. (1990). Failure to recognize fetal alcohol syndrome in newborn infants. American Journal of D&eases in Chi.!dvenz 144, 1142- 1146. May, P., & Hymbaugh, K. (198211983). A pilot project in fetal alcohol syndrome among American Indians. Alcohol Health and Research World, 7, 3-9. National Institute on Alcohol Abuse and Alcoholism. (1987). Proyam strateflies fm peventin~ fetal akohol yndnmze and alwbol-rebed birth dcfcm (DHHS Publication No. ADM 87-1482). Washington: US Government Priuting Office. Olson, H. C., Burgess, D. M., & Streissguth, A. P. (1992). Fetal alcohol syndrome (FAS) and fetal alcohol effects (FAE) : A lifespan view, with implications for early intervention. Zero to Three, 13, 24-27.

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Rosett, H. L., & Weiner, L. (1984). Alcohol and the fetus: A clinical pmpective. New York: Oxford University. Rosett, H. L., Weiner, L., & Edelin, K. C. (1983). Treatment experience with problem drinking pregnant women. Journal of the Amhan Medical Association, 249, 2029-2033. Rydelius, I?. (1985). Long-term prognosis for the young alcohol abuser. In U. Ryberg, C. Ailing, & J. Engel (Eds.), Alcohol and the &e@ind brain (pp. 187-191). New York: Raven. Sokol, R. J. (1984). Alcohol and pretlnany. Detroit: Wayne State University/Hutzel Hospital. Spohr, H., & Steinhausen, H. (1984). Clinical, psychopathological and developmental aspects in children with the fetal alcohol svn-

of Pedlatrlc Volume

Health Care 8. Numkr

drome: A four-year follow-up study. Mechanism of ahbol, duwge in utero (pp. 197-217). London: Pirman (Ciba Foundation Symposium 105). Spohr, H., & Steinhausen, H. (1987). Follow-up studies of children with Fetal Alcohol Syndrome. Neuropediawics, 18, 13-17. Streissguth, A. P., LaDue, R. A., & Randels, S. P. (1988). A manual on adolescents and adults with fetal alcohol syndrome with special reference to Awmican Indians (2nd edition). Albuquerque: Indian Health Service. Weiner, L., & Morse, B. A. (1991, November). Facilitating development for children with fetal alcohol syndrome. The Bmvn Univm@v Child and Adolescent Behavior Letter, 7 (suppl), pp. 1-4.

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