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3
Vignettes

In the following pages, several vignettes are presented to describe a variety of experiences that are frequently encountered in the context of prenatal alcohol exposure, particularly its most severe outcome, fetal alcohol syndrome (FAS). The vignettes are based on interviews of cases known to committee members, but many details have been changed to protect the privacy of individuals. The stories are intended to paint a picture of FAS. Each subsequent chapter of the report describes one piece of the fetal alcohol syndrome problem. The best-known case history of FAS in the lay literature is The Broken Cord, a moving account of an adoptive father's struggle to understand the serious limitations of his son (Dorris, 1989). The reader is referred to this work for a complete description of a severe case of FAS. Dorris has also written essays describing the lives of his other adopted children who are affected by prenatal alcohol exposure (included in Dorris, 1994). Dorris' works are particularly important for their description of the difficulties parents have in accepting their child's limitations and of problems faced by prenatal alcohol-affected teenagers and adults.

The first three examples in this chapter are case histories of women who have given birth to children whose problems run the gamut from none to possible alcohol-related effects, to FAS. Following these is a case involving brothers, both affected by prenatal alcohol exposure, with a description of the social setting into which they were born. The next vignette describes the outcome of someone with FAS who was raised in a stable and supportive environment. The next case example describes the life of a woman with fetal alcohol syndrome, including the birth of her four children. Finally, a vignette is described that is quite typical of



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Page 52 3 Vignettes In the following pages, several vignettes are presented to describe a variety of experiences that are frequently encountered in the context of prenatal alcohol exposure, particularly its most severe outcome, fetal alcohol syndrome (FAS). The vignettes are based on interviews of cases known to committee members, but many details have been changed to protect the privacy of individuals. The stories are intended to paint a picture of FAS. Each subsequent chapter of the report describes one piece of the fetal alcohol syndrome problem. The best-known case history of FAS in the lay literature is The Broken Cord, a moving account of an adoptive father's struggle to understand the serious limitations of his son (Dorris, 1989). The reader is referred to this work for a complete description of a severe case of FAS. Dorris has also written essays describing the lives of his other adopted children who are affected by prenatal alcohol exposure (included in Dorris, 1994). Dorris' works are particularly important for their description of the difficulties parents have in accepting their child's limitations and of problems faced by prenatal alcohol-affected teenagers and adults. The first three examples in this chapter are case histories of women who have given birth to children whose problems run the gamut from none to possible alcohol-related effects, to FAS. Following these is a case involving brothers, both affected by prenatal alcohol exposure, with a description of the social setting into which they were born. The next vignette describes the outcome of someone with FAS who was raised in a stable and supportive environment. The next case example describes the life of a woman with fetal alcohol syndrome, including the birth of her four children. Finally, a vignette is described that is quite typical of

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Page 53 an alcohol-abusing woman's encounter with the health care system. This case history begins with the birth of a child with fetal alcohol syndrome. These case histories are presented to provide the reader with the real-life context in which significant fetal alcohol exposure often occurs. The reader will note that there are many similarities in the maternal histories presented. Some of these similarities include the following: alcohol abuse is usual in the family of birth of women who drink during pregnancy; early experimentation with alcohol is common; first pregnancy often occurs at a very young age; FAS and other levels of alcohol-related damage usually occur in later pregnancies and in the later years of childbearing; child neglect is frequent; unstable domestic relations are common, particularly when a spouse who abuses alcohol is involved; there is a general lack of stable employment and occupational commitment; and low education and unstable living conditions are frequent. Commonly, there is intervention by others with the children after birth to protect them from chaotic home environments. The reader will also notice many differences among these cases. It cannot easily be said that there is only one pattern that leads to the birth of FAS children. Some of the differences illustrated in the cases are in the quantity, frequency, and timing of the drinking that occurs. That is, there are a number of heavy-drinking patterns, from bingeing to chronic consumption, that can produce FAS. Various levels of medical and health problems are experienced by the mothers, very frequently in some and surprisingly absent in others, given the high level of drinking. Frequent contacts with criminal justice and social service agencies occur, but some women, particularly isolated drinkers, tend to escape this problem. Finally, family relationships are highly variable, although frequently not very stable. Many of the consequences of drinking relate to the level of community support and to the social interaction, both within a community and between the community and the pregnant woman who drinks. Therefore, despite the commonalities outlined above, there is no one pattern or life-style associated with alcohol abuse or with having a baby with FAS. While we must be aware of the common risk factors and patterns of maternal drinking that can lead to FAS and other possible alcohol-related effects, we must also be aware that any of a variety of patterns of alcohol abuse—particularly over an extended period of time in older women of childbearing age—can damage a fetus. SALLY Sally was 35 years old. She had been pregnant three times and had borne two boys and a girl. Her second child was diagnosed with FAS while she was pregnant with the third child. This third child has since been diagnosed with FAS as well. Sally had a relatively unremarkable youth, but was 16 years old at the

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Page 54 birth of her first child. The other two children were born when she was 28 and 31 years of age. The oldest child lives with his birth father. Her overall health has been marked by irregular menses and bouts of weight loss. She has seen a physician for hallucinations and an eating disorder. She has also had several episodes of pneumonia. Her psychiatric and physical problems have been attributed by her physician to her alcohol abuse. Her first experience with alcohol was at age 16, while she was pregnant, and she reports that she began drinking regularly at 17, after her first baby was born. She was not married, and her parents cared for the child as much as she did. During her twenties she drank heavily, sometimes in weekend binges, but at other times she might remain intoxicated for a week or more at a time. She has been in outpatient alcohol treatment once and has attended Alcoholics Anonymous (AA) meetings sporadically over the years. She did not receive treatment for alcohol dependence during her pregnancies. At the time of interview, she was not in treatment and reported that she continued to drink six beers or wine coolers daily, with binges of more than ten drinks at least once a week. She is not at risk for another FAS child because of a recent tubal ligation. During the pregnancy with her second child, she reported drinking four to six drinks one to two times per week, generally at local parties in bars in the nearby towns, through the first and second trimesters. She stopped drinking completely toward the end of the pregnancy. She had late prenatal care, starting in the third trimester, and was diagnosed with gestational diabetes. None of her friends used drugs other than alcohol, so neither did she during the pregnancy. She worked part-time at home. She did not live with her partner for most of the pregnancy. The infant weighed 5 pounds, 4 ounces at birth. Her drinking patterns during the third pregnancy were similar. Sally's father is no longer associated with the family because of his alcohol abuse. Her closest friends are heavy drinkers. Her partner during her second and third pregnancies was a heavy binge drinker. She now lives with her three children; makes money infrequently through domestic jobs; and receives Aid for Families with Dependent Children (AFDC), food stamps, and a government housing subsidy. When she is drinking heavily on binges, members of her extended family look after the children. ANN Ann was a 34-year-old who had been pregnant five times and had given birth to five children (three girls and two boys). Each of these children weighed less at birth than the previous one. Her youngest child was diagnosed with FAS. She was 33 when this child was born. There is some concern that the other children have problems, but they have not yet been evaluated by a specialist. All of her children were fathered by the same man. She rarely used birth control of any type.

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Page 55 At the time of interview, all of her children lived with her. However, shortly after the interview she was arrested for abandonment of the children and they were put into foster care with their maternal grandmother. She has a high school diploma and is a self-employed artisan. Her heath status has been generally good, except for pregnancy-induced hypertension during the last three pregnancies. Depression has been a problem that has taken her to a physician. She has had several injuries as a result of domestic violence, including one during the pregnancy with the child diagnosed as FAS. She reports alcohol involvement in these episodes. Her husband, friends, and her father drank heavily. Her mother does not drink, which is true of many women in this particular community, where drinking is more typically a male recreational activity. Her first experience with alcohol was at age 12; however, she did not start drinking regularly until she was 20. She has received inpatient treatment for alcohol dependence once and outpatient treatment twice. At the time of interview she was not in treatment and reported binges of more than 10 drinks on the weekends. She also reported past use of marijuana. During the pregnancy with the child diagnosed with FAS, she drank more than 10 beers almost every day until the last few weeks of the pregnancy, at which time she states that she abstained from alcohol use until after the birth. She was married during the time of the pregnancy and reports that her spouse was a heavy drinker on weekends. She states that she used no other drugs during the pregnancy. She had no prenatal care and was seen by a physician only at delivery. LYDIA Lydia was a 36-year-old who had been pregnant eight times. She gave birth to five living children, having had one miscarriage and one intrauterine fetal death at 24 weeks. She was pregnant at the time of interview. Her youngest two children were examined for possible FAS. Her first child was born when she was 19 years old; the children suspected to have FAS were born when she was age 30 and 31. She has been married twice and has had several different partners who have fathered her children. Of her five living children, only two live with her. Her parental rights have been terminated for one of the children seen in a special clinic as a suspected FAS case; the child was adopted by Lydia's sister. Her first experience with alcohol was at age 16, and she began ''drinking regularly" at 21 years of age. She occasionally used marijuana. Her only involvement with alcohol treatment was attendance at AA meetings. At the time of interview, she admitted to current use of alcohol, drinking more than 10 beers once per week with occasional heavier binges. Most of her drinking is done in small groups with friends, either at someone's house, or at home alone with a male friend.

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Page 56 She stated that during the pregnancy with her fourth child, she drank 9 to 10 beers three or four times a week through the first, second, and part of the third trimester, and then abstained in the last few weeks of pregnancy. Most of this drinking was done at home, alone, and in secret. She smoked less than one pack of cigarettes a day. She also received early and adequate prenatal care. This child, a boy, weighed less than 6 pounds at birth and had facial dysmorphology characteristic of FAS, including short palpebral fissures, flat philtrum, hypoplastic midface, and moderate hirsutism. However, at the time of examination (when the boy was 3 years old), his height was at the 35th percentile, and his head circumference was at the 10th percentile; therefore, he was larger than most FAS children at this age. He manifested some developmental delay but, in the absence of growth deficit, did not receive the diagnosis of FAS from a dysmorphologist (although he had previously been diagnosed as having fetal alcohol effects by a pediatrician). Lydia stated that during the pregnancy with the youngest child (the fifth) she was still consuming a significant amount of alcohol, but drank less often and smaller amounts than during the pregnancy with the older child. She also decreased the amount of alcohol over the entire course of the pregnancy and did not drink at all during the third trimester. She received early and adequate prenatal care. She continued to smoke during this pregnancy. Her partner, who is also the father of her fourth child, was more stable at this time and lived with her during the entire pregnancy. He nevertheless continued to drink heavily during this time, most frequently at home. Neither had steady jobs. The younger child weighed 6 pounds, 2 ounces, at birth. She does not manifest the dysmorphology or other physical features found in the next older child, although she appears to have some developmental problems that are consistent with a possible alcohol-related effect. Lydia's social history is significant for heavy alcohol use by her siblings and partner. Her father is a recovering alcoholic. She was once arrested for public intoxication, and she has been involved with child protective services for issues of abuse and neglect. They terminated parental rights for the third child, prior to the birth of the fourth child. She has continued to drink during this current pregnancy, but when contacted by the counselor who performed the interview on which this vignette is based, she was sober and had been so for two days. She seemed genuinely aware, at the time of interview, of the importance of eliminating drinking in this pregnancy. MARK AND JAMES Mark and James had been in foster care for four months when they were referred for developmental evaluation. Their foster mother found Mark, 18 months, and James, 31 months, unmanageable and was considering requesting their placement in another foster home. Although she and her husband were

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Page 57 experienced foster parents and were being supported by an agency that provided case management, medical services, and education for foster parents, they found dealing with the boys' behavior extremely difficult. Neither child showed any evidence of language development. Mark bit people frequently and often attempted to swallow nonfood items as if he were not able to discriminate food from other items (a condition called "pica"). As a result, he would often choke, and his foster mother was afraid that he would asphyxiate. He interacted with objects inappropriately and threw every object after attempting to bite it. James did not seek contact with people and showed no evidence of emotional reactions. He did not respond to social approaches from adults or other children. Both children showed irregular sleeping habits, refusing to go to sleep at bedtime, and often awoke during the night and left their beds to roam around the house and to play with things in the dark. Both children refused to eat at the table but preferred to steal food from peoples' plates and from the garbage. The boys were constantly in motion, darting from one object to another, and neither child responded to attempts at discipline on the part of their foster parents or other adults. At this first assessment, neither child could be tested, although it was evident that they were delayed in the development of language, cognitive, and social skills. Both boys also were mildly delayed in achieving fine and gross motor skills. James appeared to be small for his age but in the normal range (20th percentile), while Mark was at the 3rd percentile for head circumference and weight. Mark also had the characteristic facial features associated with fetal alcohol syndrome. The caseworker who supervised the brothers' care reported that the boys were "crack" babies and, at that time, she and the foster parents attributed their unusual behavior to prenatal cocaine exposure. However, when the mother's medical records were reviewed, she had a long history of alcohol abuse and had been using cocaine only in the last few years. She was 34 at the time James was born and reported that she had been drinking heavily since she was a teenager. She had been hospitalized on several occasions for alcohol-related injuries, and it was noted at the time of Mark's birth that she was experiencing alcoholic gastritis and had evidence of liver damage. She reported drinking about 12 ounces of absolute alcohol per week (24 drinks) during her pregnancy with James and about 20 ounces a week (40 drinks) when pregnant with Mark. She was also noted to be a polydrug user, who reported smoking about a pack of cigarettes a day, using marijuana regularly, and using cocaine several times a week. When Mark was born, a urine screen revealed the presence of cocaine metabolites, which called the family to the attention of county social service agencies. The mother was assigned a caseworker, who eventually recommended that the children be removed from the home due to neglect. Investigation indicated that the children had received virtually no care over the previous year and that James had been scavenging food from the garbage to feed himself and Mark.

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Page 58 It was recommended that the boys be seen again after a year in foster care, since their behavior indicated that both had an attachment disorder due to lack of caregiving and that neither was socialized enough to allow accurate assessment of their abilities. A stable foster home, good nutrition, and referral to an early intervention program were recommended. When the boys came in for the one-year follow-up, their behavior had changed dramatically. The unresponsive, feral children were now unusually quiet and watchful. Both were responsive to social stimuli and could use language. Problems with eating and sleeping patterns were resolved, and both children were toilet trained. Cognitive testing indicated that James was functioning in the "borderline" range intellectually. That is, he had an IQ of about 75 and his adaptive skills were equivalent. Mark, who had noticeable facial dysmorphia at this time, was functioning in the mildly retarded range (i.e., developmental score of less than 70) with equivalent adaptive skills. The boys were noted to be growth retarded as well, with Mark more affected than James. At 2 ½, Mark weighed about 20 pounds and looked somewhat frail. During the assessment, he clung anxiously to his foster mother and appeared very wary. James is now in first grade, and Mark is in kindergarten. Both continue to show the characteristics of fetal alcohol exposure, with Mark, the younger child, more obviously affected. Both are cognitively delayed, show fine and gross motor deficits, and are small and slender. However, both boys also show the emotional problems associated with early neglect and foster care placement, that is, attachment disorder and, as they have gotten older, conduct disorder. James has experienced a number of problems at school and is being recommended for placement in a classroom for children with behavior disorders. His teacher suggested that he be treated for attention-deficit hyperactivity disorder, but comprehensive medical and psychological assessment did not confirm this diagnosis. Instead, his acting out and angry behavior are attributed to his attachment problems. Mark, who is more clearly mentally retarded, has been able to receive special education services and has had fewer behavior problems. Their foster parents, who have four other children in the home, have provided good basic care but have not been able to make the emotional connections with the boys that might have helped them overcome their early attachment difficulties. PETER Peter is 25 years old. His mother began drinking when she was 15 years of age and was alcohol dependent by the time of his birth nine years later. His father was a professional with a good income and was able to shield his wife's alcohol problem from public view. The mother attempted alcohol treatment when Peter was a year old and after a relapse became permanently sober when he was a toddler. Early schooling did not go easily for Peter. Comprehensive educational testing showed that Peter had borderline intelligence (IQ = 72), problems with

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Page 59 language usage, significant delays in reading and math even for his level of intelligence, distractibility and hyperactivity. Peter was placed in special classes and provided with tutoring. He was able to make academic progress with this support but continued to have problems in school because of his failure to follow rules. His parents believed that the child was truly unable to understand the rules, but the teachers would not agree. Peter was regularly punished for his behavior and began to show anger and school anxiety. In addition he was not well accepted by other children his own age and was largely isolated. His parents' response to Peter's emotional change was to remove him from the school. After concluding that Peter would face many of the same assumptions about his behavior in other schools, they decided to teach him at home and to develop his peer group through their church. This approach worked reasonably well, but Peter increasingly asked to return to school and started high school in the ninth grade. He found the level of work and the pace of activity simply too high. He dropped out of school in the tenth grade, but his parents were able to help him get a GED. After leaving school Peter began to have trouble with the police. He was caught shoplifting on several occasions. Each time Peter maintained that his "friends" had suggested that he help them by taking a few things out of the store. Peter did not seem to learn from his experience. His parents were able to keep the charges from becoming serious and were generally successful in isolating Peter from this group of "friends." Peter's parents observed that he was skillful with his hands and liked crafts. They introduced him to the art of woodworking. Peter liked this work and the family helped him open a business making and selling his crafts. The family has found that it requires nearly continual supervision to keep Peter in the shop during business hours and to supervise all business transactions. He also needs to be gently guided in the evenings to prevent wayward activities. It requires the time of both parents as well as an aunt and uncle to supervise Peter's day. Peter is proud of his business and perceives himself to be an independent adult. He enjoys his family and his contacts through his business. He would like a girl friend but does not seem overly troubled by his current inability to develop such a relationship. When Peter came to the clinic he was readily diagnosed as having fetal alcohol syndrome based on his short stature, facial appearance, abnormal neurologic examination, and psychometric profile. The diagnosis had never been previously suggested to the parents, although they had worried about this possibility for many years. Peter is seriously disabled although he did not qualify for any type of public assistance prior to his diagnosis with FAS and has had little understanding in his community. In spite of this, his family's enormous vigilance, energy and caring have prevented him from getting into any serious trouble and have provided him with a strong self image and pride in his abilities. Unfortunately, the energy required to manage Peter has taken its toll on his parents, who are reaching

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Page 60 retirement age and are fearful that they will not be able to watch Peter as closely as needed in the future. His parents have not been able to find a halfway house for him. MARY Mary is a 43-year-old woman who has lived most her life in a variety of small to medium-sized communities. Both of her parents drank heavily on weekends and frequently on week nights, when alcohol was available. Her mother died before Mary was eight years old. Mary believed she died from cirrhosis of the liver or other alcohol-related internal problems. After the death of her mother, Mary was raised by several foster families, including an uncle and aunt. Mary dropped out of school in the eighth grade and returned later to finish only the ninth grade. She had been held back one year, in the fifth grade, and it seemed that some of her promotions were due solely to the fact that she was in a special education track. She was in the ninth grade and not doing well when she had her first child at age 18. Mary has given birth to four children, two boys and two girls. She had a miscarriage at age 27. Mary had two unstable marriages and vacillated in her drinking from heavy bingeing on weekends to regular drinking every night. Both of her husbands and her friends condoned and even encouraged heavy drinking on weekends. Whenever possible, though, she would drink heavily with friends on the weekends, usually in bars or at parties. She had participated in inpatient alcohol treatment programs twice, once in her mid-thirties and again at age 42. At the time of the interview, she had been abstinent for more than nine months. She had had some experience with Alcoholics Anonymous groups, but generally the lack of interest of her male partner was an impediment to staying in these groups. Mary had had her first experience with drinking at age 15. When asked about her life in general, Mary became very thoughtful and quizzical. Her speech was slow and the thoughts seemed laborious. She said, "I always knew that I was different." She went on to recall that "I never felt that I fit in, and many things which went on around me, confused me. There were many things that I didn't understand in school, and school had very little purpose for me." When told of her diagnosis of possible FAS at age 43, Mary stated that she found the diagnosis "interesting.'' She said that "maybe that is why I do some of the things that I do." One of the things that she highlighted in her discussion was that she felt that she was a weak person. She felt that she was never able to follow through on her wishes and desires the way other people do. At the time of the interview, her third husband was a recovering alcoholic. They had met in alcohol inpatient treatment. She worked as a domestic and he as a janitor for the alcohol treatment program. The two of them are supporting one another in their new life-style. At age 43, Mary does not have custody of any of her four children. The

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Page 61 oldest child, a girl, is married, has two children, and from all indications is living a normal life in a town several hundred miles away. The two middle children, both boys, are teenagers who have had various problems with school, both having been raised to a great extent in foster homes and in boarding schools for children with unstable family backgrounds. Only the younger of the two boys has needed special education, because he shows some signs of learning disabilities. The youngest child has been in foster placement for most of her life. She has been back and forth between Mary and foster homes four different times. Mary has a major goal of seeing three of her four children periodically and wants desperately to regain custody of her youngest child. Her hopes for the future are to remain sober, to be a good wife to her new husband, to get custody of the youngest child, and to watch her older children and her stepchildren grow. BABY HERBERT'S MOTHER Herbert was first seen on the second day of his life in the intensive care unit of a large children's hospital. He was born the day before at a community hospital and transferred because of his small size and intermittent bradycardia associated with a heart murmur. Herbert was three weeks premature and small for his gestational age. He was in the 15th percentile for height and below the 3rd percentile for weight. His face was unusual. His eye slits (palpebral fissures) were very short. In addition, his upper lip was thin, his philtrum was thin, and his nose was short and upturned. He had a heart murmur compatible with a ventricular septal defect, and he had unusual creases on his palms suggesting unusual flexing of the hands in midgestation. His head circumference was small (3rd percentile), and his neurological exam was abnormal in that there was a poor suck and low tone. The medical staff dysmorphologist determined that Herbert had fetal alcohol syndrome and called the referring physician with this information. The physician responded that the mother had been seen in an emergency room two weeks prior to delivery with acute gastritis and a high blood alcohol concentration. The physician said that she had had no previous suspicion that the mother had any problems with alcohol abuse. The mother was a 28-year-old accountant who had worked until shortly before delivery. Her husband was a mid-level manager in a technical field and had participated in his wife's prenatal care visits. When the children's hospital staff (including physicians, nurses, and social worker) became aware of the FAS diagnosis, they were enraged with the mother, although they had not met her. They contacted child protective services and began to plan for the removal of the baby from his mother's care. When Herbert's mother was released from the hospital herself and came to see her baby, she was appropriately concerned about the health of her child. She was soon overwhelmed by the hospital staff's hostile attitude and threatening approach. She responded to the accusations of fetal abuse by flatly denying any

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Page 62 use or abuse of alcohol during her pregnancy. This led the hospital staff to view her as a liar and to see this as further proof that she was an unfit mother. In fact, the hospital staff had no information at the time to indicate that Brenda (when sober) could not care for her child effectively, or that she had rationally understood that drinking during pregnancy could hurt her baby and yet continued to drink anyway. Denial of alcohol use and potential harm is common in those dependent on alcohol. The hospital staff was helped to see that both the mother and the child were their patients. The recognition of FAS in the baby was an opportunity for positive intervention with his mother. This was a moment, if handled appropriately and supportively, when she might be ready to confront her alcohol dependence, thus improving her health, maximizing her ability to care for her child, and preventing fetal damage in future pregnancies. REFERENCES Dorris M. The Broken Cord. New York: Harper and Row, 1989. Dorris M. Paper Trail: Essays. New York: HarperCollins, 1994.