NADD Bulletin Volume IV Number 1 Article 4

Complete listing

Fetal Alcohol Syndrome and Other Alcohol Related Birth Defects: Identification and Implications

Kathleen Tavenner Mitchell, M.H.S., L.C.A.D.C.

An estimated 25 percent of adults in the United States either report patterns of drinking that put them at risk for developing problems of addiction or currently have alcohol-related problems (National Institute on Alcohol Abuse & Alcoholism (NIAAA), 1995). In May of 1997 the Centers for Disease Control (CDC) reported that the number of pregnant women drinking frequently or in binges had increased fourfold, to 3.5%. This increase translates to as many as 140,000 women who place their unborn children at risk for fetal alcohol syndrome (FAS), alcohol related birth defects (ARBD), or alcohol related neurodevelopmental disabilities (ARND). Today’s young women are engaging in social and binge drinking like never before in the history of the United States. Yet after twenty-seven years of knowledge of fetal alcohol syndrome, the majority of physicians and other health care professionals are unaware of the true hazards of alcohol use during pregnancy. Most of these professionals never receive training on how to identify and diagnose FAS or alcohol related effects. Physicians report difficulty in identifying substance abuse in women. Many report lacking the necessary knowledge and skills to intervene with substance abusing women. This lack of knowledge translates to a serious under-reporting of FAS/ARBD/ARND. If more physicians and other health care professionals were educated on the extent of the potential hazards of alcohol use during pregnancy, it would reduce the number of future births that are affected.

Historical Perspective of FAS and ARBD

References to the effects of prenatal exposure to alcohol can be found in classical and biblical literature (Battaglia, 1996). In Judges 13:7 the Bible warns against drinking by young married women. A quote by Aristotle, “Foolish, drunken, and harebrained women most often bring forth children like unto themselves, morose and languid,” warns against the hazards of drinking during pregnancy. In 18th century England, the artist Hogarth sketched an etching that portrayed the social implications of maternal drinking. This etching produced a public outcry to the British Parliament to reduce the amount of gin being manufactured. The Parliament made a decision to do so in response to the problem of a decline in birth rates and the rise in the mortality rate in young children. In 1899 a physician in England, Dr. Sullivan, researched whether maternal drinking was responsible for an increase in infant mortality and miscarriages in women who drank during pregnancy. He surveyed alcoholic women that were incarcerated in the Liverpool jail. He compared the rate of their miscarriages and infant deaths to their non-alcoholic siblings. His findings reflected an increase in infant deaths. Fetal alcohol syndrome was first described in the medical literature in France by Lemoine et al. in 1968 (Battaglia, 1996). The term fetal alcohol syndrome was coined by Jones and Smith from the University of Washington in Seattle to describe a constellation of birth defects in children born to alcoholic women.

Over the past thirty years it has become socially acceptable for women to drink. Many doctors still recommend for women to drink during pregnancy to help them to relax or to sleep. They advise women that it is safe to drink alcohol in moderate amounts. According to the National Institute on Drug Abuse (NIDA) (1992), nearly 75% of pregnant women have exposed their babies to alcohol at some stage of pregnancy.

Extent of the Problem

The National Institute on Alcohol, Abuse and Alcoholism (NIAAA) (1995) estimates that the incidence of FAS is three in 1000 live births. That means that there may be as many as 12,000 new occurences of FAS each year. According to the National Center for Health Statistics that is more than twice the number of infants (5,000) born with Down syndrome and three times the number of infants (4,000) born with cerebral palsy each year. These reported cases of FAS only reflect the infants that are diagnosed with the full-blown syndrome. They do not include miscarriages, infant mortality, or other alcohol related effects. The incidence of ARBD’s and ARND has been estimated to be three to six times greater than that of FAS. Among alcohol abusing populations the incidence is even greater.

The physical, physiological, neurological, and behavioral developmental disabilities resulting from prenatal alcohol exposure range from the complete expression of FAS (Jones & Smith, 1973) to suspected ARBD/ADND. The diagnostic criteria for FAS released by Health and Human Services include: 1) prenatal and postnatal growth retardation, 2) a characteristic constellation of cranial anomalies, 3) central nervous system dysfunction, and 4) major organ system malformations. Studies have shown that binge drinking during the first trimester is when the fetus is most vulnerable to physical birth defects due to the teratogenic effects of alcohol. A woman does not have to be an alcoholic to give birth to a child with alcohol related effects. Functional birth defects result directly from alcohol damaging the developing central nervous system and vary greatly with each pregnancy. According to Ann Streissguth Ph.D., professor of psychiatry and behavioral sciences and director of the Fetal Alcohol and Drug unit at the University of Washington, ARBD’s such as neurological disorders, cognitive deficits, behavioral anomalies, seizures, hyperactivity, attention deficient disorder and personality disorders may appear as these children mature into adolescence. Individuals with FAS/ARND typically have problems with memory, judgment, and reason. In 1996, Streissguth et al. presented a summary on the secondary disabilities in individuals with FAS or ARBD. Six main secondary disabilities were examined in 405- 415 FAS/ARND clients from ages 3 to 51. Her research concluded that 94% had mental health problems, 60% (age 12 and over) had disrupted school experience, 60% (age 12 and over) had trouble with the law, 50% (age 12 and over) had been confined (incarceration or inpatient drug or mental health), 50% (age 12 and over) had displayed inappropriate sexual behavior, 35% (age 12 and over) had drug or alcohol addictions, 83% (age 21 and over) could not live independently, and 79% (age 21 and over) had employment problems (Streissguth, Barr, Kogan, & Bookstein, 1996). The disability known as FAS/ARBD/ARND is one that is life long. Streissguth’s findings report that if a diagnosis is made before the age of six it can help prevent secondary disabilities, except for mental health problems.

The Effects on Society

Mathematical skills have been known to be good indicators of a person’s ability to live independently in a community. Kvigne (1994) reports that people with FAS/ARBD usually require some sort of supportive living. Since they have not only the problems with math, they also easily forget things, are at risk for accidents, job loss, and daily confusion. Reading comprehension seems to get worse as individuals with FAS/ARND age. They can recognize words, but are not capable of high-level abstract thinking. If a person with FAS has careful penmanship and fairly good spelling skills, the illusion is created that he/she is more functional than he/she really is (p. 84).

Behavioral outcomes of alcohol exposure associated neurological damage are of great long-term significance for affected individuals and for a society, which must provide educational and social services (Coles & Platzman, 1992). People with FAS/ARND do not perceive social cues, and as a result are usually social misfits. They are easily influenced and highly suggestible, and often behave inappropriately because someone told them to do it. This characteristic explains why so many individuals with FAS/ARBD experience problems with the law by the time they are in adolescence. At an advisory group meeting of the Alcohol-Related Birth Defects Educational Campaign (ARBDEC) (1997), it was noted that Dr. Sterling Clarren, from the University of Washington in Seattle had reported data that reflected that 60 percent of children with FAS were incarcerated before the age of 18 years old. Many children with ARND develop antisocial/deviant behavior (ARBDEC, 1997). A Harvard Medical school study reported findings that indicated children with disorganized attachment histories accounted for 71 percent of the cases of serious hostile behavior at school (Lyons-Ruth, Alpern, & Repacholi, 1993). Many children with FAS/ARND seem to be born with disorganized infant attachment disorders. In 1992, Jones suggested that long term behavioral characteristics associated with FAS are similar to the behaviors demonstrated by “high recidivist inmates,” leaving him to conclude that adults with unrecognized FAS may be disproportionately represented in correctional facilities (Jones, 1992). In 1993 Pincus found that death row populations characteristically have had histories of attention deficit hyperactivity disorder, as well as events known to cause brain damage. They also have had seizures, electroencephalographic abnormalities, clumsiness, an inability to skip, and abnormal head circumferences (p. 14). All of the impairments mentioned above are characteristic of people who suffer from FAS/ARND.

Individuals with FAS/ARND usually begin needing services as young children to help them through childhood and their school years. Many of these children end up in the foster care system. Later in life they typically need housing services, job coaches, counselors, and other support systems to help them lead successful, and somewhat independent lives. Unfortunately, a majority of these individuals spend their lives getting shifted from one social agency to the next. They go from a shelter, to jail, to an addiction treatment or a mental health center, and back again. They usually receive social security income (SSI) or public assistance, as well as medical assistance. Health care costs for those affected exceed $2.5 billion annually.

The Lack of Intervention on Women Who Use Alcohol

Substance abuse in pregnancy is one of the most commonly missed of all the obstetric and neonatal diagnoses, according to the first hospital incidence survey conducted by the National Association for Perinatal Addiction Research and Education (NAPARE). This lack of recognition results in babies being born with birth defects, addiction, and accounts for the high rate of infant morbidity and mortality. The research conclusions reported that when high rates of pregnancies or births in which drugs and alcohol were present did not reflect an economic fluctuation. The hospitals with low rates of low income or public aid patients had the same rate of drug and alcohol positive urines (Chasnoff, 1992).

Outward signs of alcohol use may be subtle. Alcohol use may go unnoticed. Early studies of alcohol abuse among prenatal patients found that clinic staff reported no alcohol abuse among their patients, when, in fact, screening identified between 9 and 11 percent drinking at risk levels (Rosett Weiner, & Edelin, 1983; Sokol, 1980; Larsson, 1983). Even if a clinician does assess and intervene with women who are using, it may be difficult to obtain accurate reporting. Women are fearful of criminal prosecution or of losing their children to foster care, should they disclose an alcohol problem. As a result drinking mothers lie, hide, or minimize their continued use of alcohol during pregnancy.

Physicians, nurses, and social workers have a great impact on substance abusing women. Many pregnant women will reduce their use of drugs and/or alcohol following advice from a health care professional, even if they never disclose that use (Rosett et al., 1983). The National Organization on Fetal Alcohol Syndrome (NOFAS) has developed training programs for nursing and medical students. Currently they have existing curriculum for medical students offered at both Northwestern and Georgetown Universities. They also offer curriculum for graduate nursing and physician assistant students at George Washington, Howard, and Georgetown Universities. The curriculum includes an interdisciplinary teaching team that instructs students about the cause and manifestations of FAS. The focus is on the role of the physician/nurse in the detection of substance abuse, counseling, diagnosis, therapy, and prevention of FAS. Ethical, cultural, social, and community considerations are discussed. This program has been extremely successful clinically in accomplishing their goals of training medical students. NOFAS plans to disseminate their curriculum nationally.

The Lack of Recognition and Diagnosis of FAS/ARBD/ARND in Infants and Children

Most cases of FAS/ARBD/ARND remain undiagnosed or misdiagnosed. Efforts to track and reduce FAS rates are complicated by the fact that there is no simple laboratory test for diagnosing FAS. There are surprising few physicians in the entire country who specialize in diagnosing FAS. One study reflected that 53% of all pediatricians neglect to take a history on the maternal drinking patterns of their patients ( Morse, Idelson, Sachs, Weiner, & Kaplan, 1992). In that same study, physicians reported that they were reluctant to diagnose FAS because a diagnosis may be derogatory for the child and his family. They admitted times that they had suspected, or even knew a person had FAS, but did not diagnose it, due to the fear of stigmatizing the individual or family.

Oftentimes, physicians may look for signs of illegal drugs, yet the drug that causes the most damage to the fetus is alcohol. Outward signs of alcohol use may be subtle. Alcohol use may go unnoticed. Early studies of alcohol abuse among prenatal patients found that clinic staff reported no alcohol abuse among their patients, when, in fact, screening identified between 9 and 11 percent drinking at risk levels (Rosett et al., 1983; Sokol 1980; Larsson 1983). Even if a clinician does assess and intervene with women who are using alcohol it is difficult to obtain accurate reporting.

The Importance of a Diagnosis

Infants can be extremely difficult to diagnose at birth. FAS is present at birth, although its signs may not be obvious until a child is one or two years old. Diagnosis is difficult to make because problems seen in children with FAS/ARBD/ARND are also seen in children with other disabilities. An accurate diagnosis is important in understanding and helping these children. Caregivers need effective strategies such as one on one education, routine, structure, and an understanding of the disability as one that is lifelong in order to help them to develop and plan for successful outcomes for FAS affected individuals.

Lack of Public Awareness about FAS/ARBD/ARND

Because FAS/ARBD/ARND is a clinical diagnosis and these people are so often misdiagnosed, surveillance efforts are difficult to implement. The numbers of individuals with FAS/ARBD/ARND are estimated by obtaining results from surveys that measure the number of women who self report as drinking during pregnancy. There are some training programs in place to train health care professionals on how to detect and diagnosis FAS. Some of them offer intervention efforts to women. Although they can measure whether or not a woman successfully abstains from alcohol, there is really no way to measure the reduction of FAS/ARBD/ARND. There exists no scientific data on the true numbers of individuals with FAS/ARBD/ARND, thereby making obtaining of funding for prevention extremely challenging.

Ann Streissguth’s 1996 research findings document that the majority of individuals with FAS/ARND end up with various secondary disabilities. These secondary disabilities result in these individuals needing support from their communities. These support systems such as jails, mental health settings, addiction treatment centers, and hospitals all provide services that end up utilizing American tax dollars. There is no literature to suggest the number of individuals in these various settings that have FAS/ARBD. These findings could result in an interest to develop aggressive prevention efforts.

Researchers are convinced that many individuals that have attention deficit disorders, hyperactivity, or other various learning or developmental disabilities have these problems because of maternal drinking during pregnancy. There is no research that documents the percentage of these individuals. If alcohol is not identified as the cause when these disabilities are diagnosed, society will continue to be blind to the affects of alcohol use during pregnancy. Women will continue to drink believing that they have never met anyone with any problems due to drinking during pregnancy.

Conclusion

There is much that can be done to prevent FAS and other alcohol related effects. FAS/ARND is a multifaceted social problem that requires a coordinated response from the community at large including parents, educators, and the legal and medical systems. Unfortunately, it is still not uncommon for pregnant women to be advised by their doctors that it is all right to have an occasional drink or two to help them relax. Certainly an important approach to FAS prevention is the development of a medical environment in which concepts of the risk of FAS/ARBD/ARND are incorporated into routine health care. Counseling about drinking during pregnancy has been found to lead to decreases in alcohol use during pregnancy. Obstetric and gynecological care should include screening for alcohol problems and appropriate intervention and referral. These skills are generally not incorporated into most medical school curriculum programs. Medical students report that, although they understand the clinical implications of the pre-natal use of alcohol, they feel inadequate in the skills necessary to assess, counsel, and refer substance-abusing women to seek appropriate treatment.

Certainly, the current research that is being investigated should not be ignored. Findings announced at a meeting of alcohol researchers’ revealed subtle, alcohol induced changes in fetal neurons that could later lead to mental defects. The work, mostly done in rat neurons, showed that even moderate drinking (defined as one to three drinks per day by the US National Institutes of Health) could cause molecular changes in the fetal brain that affect its ability to learn and remember as an adult (Braun, 1996). At the level they exposed the rats to, the researcher did not find changes in (body) morphology—they looked to be normal. The changes were at the level of neurochemistry. These findings are significant, and should be communicated to the American public.

Tracking and epidemiological methodology for collecting data on the incidence and prevalence of FAS/ARBD/ARND must be improved. The general public remains greatly ill informed about the hazardous effects of prenatal alcohol use. Physicians and other health care professionals must not only be trained in how to identify and diagnose FAS/ARBD/ARND, but must obtain the skills necessary to intervene with substance abusing women. The stigma of FAS must be reduced in order to increase the accurate diagnosing of the disorder. Hiding the diagnosis in order to protect the individual and their family only perpetuates the problem and promotes further social ignorance. Alcoholism is a disease that has been stigmatized for centuries. The recent awareness of alcoholism as a disease has enabled many individuals and their families to seek help and to experience recovery and healing. It is time to stop blaming and scapegoating women for America’s love affair with alcohol. FAS/ARBD/ARND is a result of the minimizing of a potent teratogen, alcohol, by an entire society. FAS/ARBD/ARND is the result of a lack of awareness of the continuum of potential harmful effects from just a few beers, or an occasional chardonnay. Hopefully, with the appropriations made available by the passing of the

Fetal Alcohol Syndrome and Fetal Alcohol Effect

Prevention and Services Act, the next generation will regard prenatal alcohol use as a dangerous and ridiculous notion. Education for health care professionals is the key to prevention. Resources for treatment and follow-up services must be implemented to the birth mother as well as to children who are already affected. Women who are sexually active and drink alcohol must take the proper precautions to avoid having their fetus exposed to alcohol. There is much that can be done to educate, intervene, and prevent the tragedies of prenatal alcohol exposure that continue to affect individuals, families, and communities.

With external structures and assistance providing a sense of order and consistency, FAS/ARBD/ARND children and adults can attain varying levels of success. With a shift in paradigm, we can more easily accept the child’s need for structure, individual assistance, and a re-evaluating of our expectations to better suit their level ability. Those of us who are informed on the tragedy and potential hazards of pre-natal alcohol use must continue to push for global awareness. Systems must be revised to identify and serve the needs of these children in order to avoid long-term hardship for the individual, as well as on society. Our nation’s children are our future and our most precious national resource.