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Medical Resources :: Common Diseases :: Fetal Alcohol Syndrome :: Alcohol Related Disorders and Children Adopted from Abroad

Historical Perspectives
Pathophysiology and Teratology of Pre-natal Alcohol Toxicity
Guidelines in Defining Alcohol Related Disorders
Incidence of FAS Worldwide
Diagnosis of Alcohol Related Disorders
Cognitive and Behavioral Manifestations of Alcohol Related Disorders
Birth Defects Associated with Alcohol Related Disorders
Case Studies of Two Children with Fetal Alcohol Syndrome Adopted from Russia
MPZ
PEK
Long-term Outcomes for Children with Alcohol Related Disorders
Bibliography

 

Historical Perspectives

Historically, since ancient Greek and Roman times, and throughout the middle ages, alcohol was suspected to be a cause of injury to the fetus (teratogenic) as it lay innocently inside the womb. In fact, the children of women who were known alcoholics, were often cast away and abandoned by society. The bible instructed women not to drink when they became pregnant. [Clarren & Smith 1978] Bridal couples in Carthage were forbidden to drink wine on their wedding night in order that defective children might not be conceived. [Jones & Smith 1973a]

In modern times, a French group of researchers is credited with the first recognition of an effect on infants due to alcohol exposure during pregnancy. [Lemoine et al. 1968] Independent of the French, Kenneth L. Jones and David W. Smith from the University of Washington School of Medicine in Seattle, Washington described a syndrome associated with alcohol ingested during pregnancy. [Jones & Smith 1973b] The children were born to women who were chronically alcoholic during pregnancy. The infants diagnosed with fetal alcohol syndrome (FAS) were found to have a pattern of altered growth and development with similar facial features. The craniofacial abnormalities consisted of microcephaly (small head), short palpebral fissures (small eye openings), epicanthal folds (extra skin folds close to the nose at the inner aspects of the eyes), and mid-facial hypoplasia (middle area of the face appears flattened). There were many other abnormalities of the systems of the body including pre-natal and post-natal growth deficiency, problems with joints, kidneys, genitals, cleft palate, and congenital heart anomalies. Not all the initial cases reported, had all of these abnormalities, but the facial features were consistently identified. With a seven year follow-up of the original children identified by the Washington group [Jones et al. 1974], over 60% of the children had intellectual impairment usually accompanied by microcephaly.

Shurygin published a study in a pediatric journal in Russia in 1974 which also described the effects of alcohol during pregnancy. Dr. Streissguth came across this study a few years after her group had described FAS. This study looked at a unique situation where mothers gave birth to children before and after the advent of their alcoholism. The children born before the mothers became alcoholic did not have alcohol related disorders, but rather suffered from the adverse environmental conditions of their life; the children born to the mothers when they were drinking during the pregnancy clearly had what appeared to be the devastating complications of alcohol related disorders. [Shurygin 1974; Streissguth 1997a]

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Pathophysiology and Teratology of Pre-natal Alcohol Toxicity

The effect of alcohol on the growing and developing embryo and fetus is still not completely understood. The exact mechanisms by which alcohol induces malformations may be as a result of a direct toxic effect or it may be a combination of ethanol and acetaldehyde, its metabolite. [Abel 1984; Campbell & Fantel 1983 Dreosti et al. 1981; Sreenathan et al. 1982] The timing of the toxic event and the peak alcohol concentrations may work together to exert a teratogenic effect. [Schenker et al. 1990a] It is essential to look at alcohol as a teratogen to understand the actual physical effects of alcohol on the embryo and the fetus. A teratogen is a substance that interferes with normal development during gestation in utero. Teratogens can cause four main results: death, malformations, growth deficiencies, and functional deficits. When genes and teratogens interact, they cause very unique changes. The genetic make-up of both the mother and the developing embryo/fetus influences how and whether that child will be affected by the teratogen, in this case, alcohol. Between 25% and 45% of children born to mothers who drink during pregnancy will have FAS. [Gilliam et al. 1988; Streissguth 1997b] There are numerous animal studies that demonstrate brain damage from exposure to alcohol. [Clarren et al. 1988; Miller 1993; West et al. 1981] Postmortem findings have been reported as case studies on fetuses, infants, and children of mothers who used alcohol during pregnancy. The neuropathologic anomalies include micrencephaly, leptomeningeal glioneuronal heterotopias, holoprosencephaly-arhinencepahaly, agenesis of the corpus callosum, and dysgenesis of the cerebellum and brain stem. [Swayze et al. 1997a] Magnetic Resonance imaging (MRI) of children, adolescents, and adults with classic FAS has shown a high incidence of midline brain anomalies. [Swayze et al. 1997b]

Prostaglandins may also be involved in the pathophysiology of alcohol toxicity. [Challis & Patrick 1980] It has been postulated that alcohol may interfere with prostaglandin metabolism and may interfere with the normal balance and regulation of placental blood flow. The placenta is the organ created early in pregnancy for delivering oxygen and nutrients to the developing embryo and fetus. When there is decreased blood flow to the embryo or fetus, there will be insufficient oxygen and essential nutrients. Chronic hypoxia (decreased oxygen) has been implicated in the etiology of alcohol related disorders. [Lewis & Woods 1994a] The actual amount of alcohol necessary to produce malformations seen in alcohol related disorders is unknown. It is still not clear whether one can predict particular abnormalities, whether behavioral or physical, based on the trimesters when alcohol has been consumed. Alcohol probably has its effects throughout pregnancy. Evidence does suggest that short-lived, high concentrations of alcohol as occurs in binge drinking, can be especially deleterious. [Ernhart et al. 1987; Lewis & Woods 1994b; Schenker et al. 1990b; FDA 1981] The lowest harmless dose of alcohol during pregnancy is unknown and subsequently, complete abstinence is recommended.

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Guidelines in Defining Alcohol Related Disorders

The first attempt to establish uniformity in terminology for Fetal Alcohol Syndrome was addressed by the Fetal Alcohol Study Group of the Research Society on Alcoholism (RSA) in 1980 and again in 1988, without complete consensus. In 1989 Sokol and Clarren [Sokol & Clarren 1989a] provided a set of guidelines with minor modifications of the original 1980 definition. The diagnosis of Fetal Alcohol Syndrome (FAS) in its strictest definition can only be made when there is a documented history of alcohol exposure and the patient has signs of abnormality in each of three categories:

  1. Prenatal and/or postnatal growth retardation (weight and/or length or height below the 10th percentile when corrected for gestational age).
  2. Central nervous system involvement (including neurological abnormality, developmental delay, behavioral dysfunction or deficit, intellectual impairment or/or structural abnormalities, such as microcephaly (head circumference below the 3rd percentile) or brain malformations found on imaging studies or autopsy).
  3. A characteristic face, currently qualitatively described as including short palpebral fissures, an elongated midface, a long and flattened philtrum, thin upper lip, and flattened maxilla.

Children who have only some of the characteristics of FAS (central nervous system effects without all of the characteristic facial features or growth deficiency), have been categorized has having Fetal Alcohol Effects (FAE) or Possible Fetal Alcohol Effects (PFAE). [Sokol & Clarren 1989b; Streissguth 1997c] The Fetal Alcohol Study Group of RSA was not able to find any acceptable way to use these terms; Sokol and Clarren have recommended that the use of the terms FAE or PFAE should be "strongly discouraged". They have instead recommended "Alcohol Related Birth Defect (ARBD)". Aase, Jones, and Clarren criticized FAE in a commentary "Do We Need the Term "FAE"? because of its indiscriminate use which they felt led to overdiagnosis. [Aase et al. 1995] In 1996, the term alcohol-related neurodevelopmental disorder (ARND) was introduced by the Institute of Medicine. [Institute of Medicine et al. 1996a] Ann Streissguth uses alcohol-related neurodevelopmental disorder (ARND) interchangeably with FAE. [Streissguth 1997d]

For the sake of simplicity and uniformity, this chapter will use the term "alcohol related disorder" (ARD) as a general description which will encompass Fetal Alcohol Syndrome (FAS) and alcohol-related neurodevelopmental disorder (ARND) or Fetal Alcohol Effect (FAE). A child who fits the criteria established by the Fetal Alcohol Study Group of the Research Society on Alcoholism (RSA) for Fetal Alcohol Syndrome (FAS) will be specifically referred to as having FAS. If a child has some of the classic facial features of FAS, is of normal size, and has some central nervous system and behavioral manifestations, ARND or FAE will be used. The Institute of Medicine has recently attempted to sort out the complexities of the diagnostic criteria for alcohol related disorders. [IOM et al. 1996b] They have even provided a diagnostic category for children without confirmation of maternal alcohol exposure; establishing clear diagnostic criteria is an evolving work in progress associated with controversy and challenging issues which may be clarified with a more complete understanding of the pathophysiology of alcohol toxicity and perhaps the development of more definitive biochemical, molecular, or radiologic indicators of the effects of alcohol.

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Incidence of FAS Worldwide

The worldwide estimated incidence of FAS is 1.9 per 1,000 live births based on a survey of published prospective and retrospective studies from Australia, Canada, Finland, France, Sweden, Switzerland, England, and a number of cities in the United States. [Abel & Sokol 1987a] Incidence estimates vary considerably depending on the methodology of the studies and particularly on the study sites. Based on this incidence rate, an estimate of the numbers of children born with FAS can be calculated. If there are 4 million births each year in the U.S. and an incidence rate of 1.9 cases of FAS per 1,000 births, we could predict the birth of 7,600 children with fetal alcohol syndrome each year (0.0019 X 4,000,000). The economic impact of FAS is staggering; in the U.S., the economic cost associated with FAS-related growth retardation, surgical repairs of organic anomalies (cleft palate, cardiac anomalies), treatment of hearing deficits, and the management of mental retardation, learning problems, and behavioral disorders is $321 million per year. [Abel & Sokol 1987b]

Families who are adopting from Eastern Europe and the Former Soviet Union need to know that the use of alcohol during pregnancy is rampant. There are no public health programs to educate women about the deleterious effects of drinking during pregnancy. Poverty and deteriorating social conditions in the last few years have led to increasing substance abuse in all age groups. [Associated Press/Chicago Tribune 1995; Davis 1994; Garrett 1997b] The Environmental and Health Atlas of Russia edited by Murray Feshbach, a prominent sovietologist on faculty at Georgetown University, is an excellent source of statistics regarding the social, economic, and health issues of FSU. Alcoholism in FSU has skyrocketed in the last decade. In 1993 the number of alcoholics in FSU rose by 40.8 percent. There was a stunning increase in alcoholism among women by 48.1 percent. Eighty to ninety-four percent of girls ages 15-17 years drank sometimes and 17 percent drank often. [Feshbach 1995a] Adolescent pregnancy and pregnancy among middle aged women is on the rise in FSU. Abortions are difficult to obtain; women attempt their own abortions and die of the complications. [Feshbach 1995b] It is not uncommon to note as many as ten pregnancies on medical abstracts for adoption evaluations from FSU. Women who drink do not have adequate nutrition and are unable to obtain consistent pre-natal care; premature births are epidemic in Former Soviet Union. Miscarriages are common as well.

In a retrospective chart review of 131 pre-adoption evaluations which included accompanying videos, conducted at Winthrop-University Hospital from 1994 through 1997, seventeen (13%) medical abstracts included a documented history of maternal alcohol ingestion during pregnancy. Using the strictest criteria defined by the Fetal Alcohol Study Group for the Research Society of Alcohol which required documentation of maternal alcohol ingestion, there were 2 (1.53%) children with FAS. Fifteen (11%) children were exposed to alcohol and were at risk for FAE. There was a suspicion of FAS by video evaluation in 28 (21.4 percent) children. Out of the 28 suspected FAS cases, there were 5 (17.8 percent) children with a documented history of maternal alcohol abuse on the medical record. Some of these children did not quite fit the classic FAS picture. It is unlikely that children adopted from abroad who may appear to have the classic features of FAS will have a documented history of maternal alcohol ingestion.

Extrapolating from the number of actually diagnosed FAS cases, would result in a rate of 15 per 1,000 births which is eight times the worldwide rate of 1.9 per 1,000. The 95% confidence limits for 15 per 1,000 live births are as follows: lower limit is 1.9 per 1,000 and the upper limit is 54.1 per 1,000. The birthrate in Russia is 1.4 million births per year. With an incidence of FAS of 15 per 1,000 live births, there could potentially be 21,000 children with FAS born each year (0.015 X 1, 400,000) in the Former Soviet Union.

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Diagnosis of Alcohol Related Disorders

Included in this section of this chapter are two photographs of children who were living in an orphanage in Moscow at the time they were observed by this author in August 1997. Both children had a documented history of maternal alcohol abuse in their medical histories. They had growth failure for all growth parameters (height, weight) including head circumferences below the 3rd % (microcephaly); they were already considered mentally retarded by extensive evaluations of the doctors who examined them in the orphanage. This was confirmed by a detailed discussion between the author and the orphanage director in August 1997. The three year old boy's parents were both alcoholics who occasionally came to visit him at the orphanage in a drunken state. In order to really understand the subtleties of diagnosing the classic features of FAS, the reader should be looking at the photographs while reading this section. The faces of these children clearly have all of the classic features of FAS: small eye openings with epicanthal folds, a flattened midfacial area, and a thin upper lip, with a long, flat philtrum.

It is essential to understand that the diagnosis of FAS is not always so easy. It is often completely overlooked in newborns [Little et al. 1990]. Many healthcare providers have not had training in the recognition of FAS. The face of an infant with suspected FAS may not appear to have the classic features early on in infancy, but as the muscles and bones mature, the facial features can become more apparent. Some of the classic features may be indistinguishable from certain ethnic characteristics. Asian and Native American children have epicanthal folds and a flattened midfacial area. There are some very Asian looking Russian children because of Russia's close proximity to Asia and the obvious mixing of cultures over the centuries. Russians living in Ulan-Ude, just north of Mongolia, look like Asian caucasians. African American children do not have a thin upper lip, but the absence of this characteristic should not rule out FAS. [Streissguth 1997e] There are also other syndromes that resemble FAS like fetal hydantoin syndrome (exposure to dilantin (phenytoin), an anti-convulsant medication during pregnancy).

Most importantly, the facial features may just not be classic! The effect of the alcohol is quite variable as discussed in the section on definitions and terminology. Children may outgrow the facial features of FAS as well as their growth failure. Weight gain occurs quite often, although linear growth may remain limited [Streissguth 1997f]. Some children may be born with a normal head circumference, but as they grow, their head circumference growth velocity is not normal and their microcephaly evolves by the time they are one year of age. This is actually commonly seen on Russian pre-adoption growth charts, but it would be impossible to distinguish this late onset microcephaly as a result of alcohol exposure from malnutrition and deprivation in the orphanage and intrauterine infections (syphilis, cytomegalovirus, rubella, toxoplasmosis, herpes simplex). There are diagnostic tools to help professionals to learn how to identify FAS. According to Dr. Streissguth, Jon Aase views the diagnosis of FAS as detective work. [Aase 1990; Aase 1994] He has produced a videotape guide to teach the diagnosis of FAS.

A photographic screening tool developed by Astley and Clarren [Astley & Clarren 1996] uses computer analysis of standardized photographs to make the diagnosis of FAS. For the diagnosis of children adopted from abroad, this tool has limited utility because the quality of the photographs would most likely never meet the stringent requirements of the computer software. It is extremely challenging to make the diagnosis of FAS from video and photographs provided with a pre-adoption review. The videos are poorly produced and are often copied numerous times, losing most of the quality and acuity. Photographs are taken too far away or taken at angles that really do not allow clear inspection of the face; the photos are often copied or faxed before they are presented to prospective parents. The ethnicity of children adopted from abroad could hardly be accounted for with this simple computerized photographic screening tool.

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Cognitive and Behavioral Manifestations of Alcohol Related Disorders

What are the central nervous system and behavioral manifestations of alcohol related disorders? The behavioral and cognitive effects of alcohol related disorders can be mild, moderate, or severe. There is no way to predict the severity based on the physical appearance of the child. There are no tests to predict the future effects for an newly diagnosed infant. In a recent survey of FAS case reports by Mattson and Riley, between 1973 and 1996, the mean IQ was 65.73 (SD=20.2) with a range of 20 to 120 [Mattson & Riley 1997a]. The average IQ for individuals affected by alcohol is in the mental retardation range, but there is a tremendous variation. Children with ARND or FAE appear to have higher IQ scores than children with classic FAS, but these scores are still in the mentally retarded range for the most part. [Mattson & Riley 1997b] Even if the IQ is the normal range, children with alcohol related disorders can have severe and complex cognitive deficits and unusual behavioral manifestations. Some of these problems include jitteriness, disturbed sleep/wake cycles, hypotonia, hypertonia, poor state regulation, poor habituation, head banging and/or body rocking (self-stimulation behaviors), poor fine motor or gross motor control, hyperactivity, poor eye-hand coordination, poor balance, poor tandem gait, central auditory dysfunction, delayed or perseverative language, attentional impairments, learning disabilities, deficits in receptive and expressive language, poor impulse control, poor concentration, memory impairments, difficulties with judgment, difficulties with abstract reasoning, inability to generalize from situation to situation, difficulties with abstractions such as time and space and cause and effect, and poor adaptive functioning. Over time as the child grows from infancy through childhood to adolescence and adulthood, some or all of these cognitive and behavioral manifestations can become apparent, but are commonly misdiagnosed. If alcohol is not suspected, the child is mislabeled and treated inappropriately. [Streissguth 1997g; Mattson & Riley 1997c]

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Birth Defects Associated with Alcohol Related Disorders

What are the possible multisystem manifestations (birth defects) associated with alcohol related disorders? Twenty to fifty percent of children with FAS or FAE demonstrate a variety of physical anomalies [Committee on Substance Abuse and Committee on Children with Disabilities 1993] (see Table 1) including abnormalities of the face (cleft lip and/or palate), heart (ventricular septal defect, atrial septal defect, patent ductus arteriosus, Tetralogy of Fallot) skeleton (joint abnormalities, digit abnormalities), hearing deficits (conductive and neural), teeth (small teeth and faulty enamel), eyes (microophthalmia, myopia, strabismus, hypoplasia of the optic nerve) [Stromland & Hellstrom 1996], genitals (hypospadias, hypoplastic labia majora), and kidneys (hydronephrosis, horseshoe kidneys) [Taylor et al. 1994] This study looked at the renal sonograms of 84 patients with alcohol related disorders and found significant renal abnormalities in three (3.6 percent) patients. They do not recommend renal sonograms, but this author disagrees because there are just not enough patients screened in this study.

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Case Studies of Two Children with Fetal Alcohol Syndrome Adopted from Russia

These two case studies are provided as a model for understanding how a pediatrician diagnoses and manages children adopted from abroad who are affected by alcohol. All children suspected of having alcohol related disorders should be seen by an experienced dysmorphologist to confirm the diagnosis of FAS. If a child has FAS or FAE, underlying physical anomalies must be uncovered. These children should be evaluated by a pediatric ophthalmologist and pediatric cardiologist; a kidney sonogram and an audiologic evaluation should also be considered as part of the comprehensive evaluation for alcohol related disorders. Because of the high probability of mental retardation, neurodevelopmental deficits, learning problems, and probable secondary emotional and behavioral problems, the child should have yearly child study team/early intervention evaluations for optimal school placement to ensure satisfactory quality of life for the individual and his/her family. The pediatrician should be proactively coordinating all specialist referrals and meet with the family on a regular basis to assess the child's progress in school. Developmental assessments should be performed as part of the health maintenance visits in the pediatrician's office. The pediatrician should read yearly child study team reports and serve as an advocate for the family when there are difficulties in accessing educational/social services.

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MPZ

MPZ (view photo) is a now 3 year old girl adopted from Moscow, Russia in April 1997 at 19 months of age. She was adopted at the same time as a 3 year old boy (unrelated), who is now 4 years old and is not affected by alcohol. Her medical history indicated congenital heart disease, though there was no specific cardiac lesion designated. There was no history of maternal alcohol abuse in the medical history. Her video and medical abstract were reviewed by her primary care physician. The possibility of facial features consistent with fetal alcohol syndrome was discussed with the parents. She was premature with a gestational age of 34 weeks and her birth weight was 2 kg (4.4 pounds) which is consistent with her prematurity. Her growth curve in Russia was well below the 5th% for all growth parameters and it has continued to be below the 5th% though it has improved. Her facial features were consistent with FAS. Laboratory studies standard for a child adopted from abroad were performed when she first arrived in the U.S. and were all normal. Her vaccines were started from the beginning and she is current.

As part of the evaluation for a child with suspected Fetal Alcohol Syndrome, she had a genetics/dysmorphology consultation, a hearing test, a pediatric ophthalmologic evaluation, a cardiac consultation with echocardiogram, a kidney sonogram, and a pediatric surgery evaluation for some toe abnormalities. She has a short II/VI soft systolic murmur best heard in the left upper sternal border radiating to her back. The echocardiogram in June 1997 revealed a patent foramen ovale with left to right shunt and most recently a follow-up echocardiogram in June 1998 revealed a patent ductus arteriosus (PDA) with good cardiac function. Coil occlusion of the PDA via cardiac catheterization in August 1998 was successful. She has had a couple of ear infections since her adoption and her audiologic evaluation (hearing test) performed in October 1998 was normal.

Her eye exam performed in July 1997 was normal, except for a moderate amount of astigmatism which may necessitate glasses in the future. A full endocrine/genetics evaluation performed in August 1997 included metabolic screening (thyroid) and chromosomes. Her chromosomes and thyroid function were normal. Her dysmorphology evaluation revealed short palpebral fissures with a thin upper lip, depressed nasal bridge, slight clinodactyly of the 5th finger bilaterally and postaxial polydactyly of both feet. Her bone age at 20 months was 6 months consistent with severe failure to thrive secondary to malnutrition, institutionalization, and FAS. Her kidney sonogram performed in October 1997 was normal. Her developmental assessment performed in April/May 1997 revealed greater than 33% delays in all assessed areas (gross motor, fine motor, language, personal-social, and cognitive development). She is currently receiving speech, occupational, and physical therapy in her home through early intervention services in her community. Most recently she has begun to increase her vocabulary, but does not combine words. The child study team in her community will be preparing a new report of her cognitive and language skills shortly. Her parents are slowly learning to cope with her severe delays.

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PEK

PEK (view photo) is a now 5 year old boy adopted from Vladimir, Russia in March 1996 at 3 years of age. He lived with alcoholic parents and 3 siblings until he was 2 years old when his parents "were deprived of their parental rights" and he was placed in the orphanage in Vladimir. He has an 8 year old (unrelated) brother who was adopted from Russia at 3 years of age and is not affected by alcohol. PEK's medical abstract included a history of parental alcohol abuse and his adoptive parents knew about this history before they adopted him. This abstract was not reviewed by an adoption medicine specialist before he was adopted and there was no video available before his adoption. The medical abstract included a birth head circumference of 31 cm which is well below the 5th%. His height, weight, and head circumference were less than 5th% on his initial physical exam in the U.S. He had bilateral effusions and was treated for otitis media. He has since had another ear infection. He also had tendon shortening of both #2 fingers. This was referred to in the medical abstract from Russia as "tenosynovitis of second fingers of both hands". His PPD (TB skin test) in April 1996 was vesiculated and 15 mm indurated consistent with TB exposure, not disease, and his chest film was normal. He completed 9 months of isoniazid preventive therapy. His linear growth has improved (at 5.5 years it is 10th%), but he is still less than 5th% for weight and head circumference. His facial features are consistent with classic fetal alcohol syndrome per his primary care pediatrician and a dysmorphology evaluation (small palpebral fissures, midfacial hypoplasia, and a long, flat philtrum). He also has physical anomalies as described in this case presentation which are often found in children with alcohol related disorders. He was seen by an ophthalmologist in April 1997 and he was diagnosed with astigmatism for which he wears glasses. This diagnosis was actually noted on the medical abstract from Russia as well. His hearing, cardiac, and kidney evaluations were normal. Standard laboratory tests for children adopted from abroad were performed at the time of his adoption and were all normal. His immunizations are current.

He had a developmental evaluation in September 1996 through his school district and was found to be delayed. He had severe delays in receptive and expressive language. Initially, he could hardly be understood even after he learned English. Now he has made marked improvement, but language still remains a problem. His fine motor skills were also delayed and he had difficulty using utensils; this was exacerbated by his shortened second fingers. He was quite awkward and often stumbled. Now he falls less and appears to have better coordination. He is currently in a special education school program and continues to have regular evaluations by the child study team; he receives occupational, speech, and physical therapy and is doing well. He is a very delightful and social boy and does not have any behavioral problems. His environment at home is very structured and predictable.

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Long-term Outcomes for Children with Alcohol Related Disorders

"The Challenge of Fetal Alcohol Syndrome/Overcoming Secondary Disabilities" edited by Ann Streissguth and Jonathan Kanter contains articles by prominent researchers and professionals who have devoted their careers to the study of alcohol related disorders. [Streissguth & Kanter 1997] This text summarizes the essence of what we know about alcohol related disorders, particularly the long-term outcomes for children, adolescents, and adults living with these disorders. It is based on a three-day conference at the University of Washington in Seattle in September 1996. The chapter on long-term outcomes entitled "Primary and Secondary Disabilities in Fetal Alcohol Syndrome" [Streissguth et al.1997] is the focus of the last section and is based on a CDC grant sponsored project from September 30, 1992 to September 29, 1996 [Streissguth et al. 1996a]

Secondary disabilities were assessed in 415 individuals; Sixty percent were white, twenty-five were Native American, seven percent black, six percent Hispanic, and two percent Asian and other. Fifty-seven percent were male and thirty-seven percent were diagnosed FAS, the rest were FAE. Thirty-nine percent of the subjects were between 6 and 11 years; thirty-nine percent 12 to 20 years; and twenty-two percent 21 to 51 years old.

A telephone questionnaire (life history interview) was used to assess the patients in the ten areas of possible long-term consequences characteristic of patients diagnosed with FAS/FAE. The interview was with caretakers of the patients. The ten major areas of interest were:

  1. household and family environment
  2. independent living and financial management
  3. education
  4. employment
  5. physical abuse, sexual abuse and domestic violence
  6. physical, social and sexual development
  7. behavior management and mental health issues
  8. alcohol and drug use
  9. legal status and criminal justice involvement
  10. companionship and parenting

The featured results were:

  • Mental Health Problems-90%
  • Disrupted School Experience-60%
  • Trouble with the Law-60%
  • Confinement (mental health hospitalization or alcohol/drug problems, jailed for a crime)-50% of the patients 12 and over
  • Inappropriate Sexual Behavior-50% of the patients 12 and over
  • Alcohol/Drug Problems-30% of the patients 12 and over
  • Dependent Living (studied in 90 patients who were at least 21 years old with a median age of 26 years- 80% of those 21 and over did not live independently
  • Problems with employment-80% of those 21 and over

Eight universal protective factors were identified in patients over 12 years of age:

  • Living in a stable and nurturant home for over 72% of life
  • Being diagnosed before the age of 6 years
  • Never having experienced violence against oneself
  • Staying in each living situation for an average of more than 2.8 years
  • Experiencing a good quality home from age 8 to 12 years
  • Being found eligible for Disability
  • Having a diagnosis of FAS (rather than FAE)
  • Having basic needs met for at least 13% of life

What is difficult to differentiate is whether the disabilities can be strictly attributed to the alcohol or to the alcohol and the alcoholic environment. Several researchers have focused on individuals with alcohol related disorders who were placed in foster care or adopted. Some studies show that an improved environment does not improve the cognitive or intellectual level of children with FAS [Aronson 1984a; Spohr et al 1994], but does improve psychosocial functioning.[Aronson 1984b; Aronson & Olegard 1987] Those children removed from the biological mothers before six months of age had fewer psychosocial symptoms than the others. The findings reported in the CDC grant project [Streissguth et al. 1996b] reviewed previously affirms these findings and serves as an encouraging reminder for adoptive parents who are especially motivated to provide a nurturing environment for children adopted from orphanages abroad who may be affected by alcohol.

One of the most useful and hopeful resources for families, teachers, and professionals is the book, "Fantastic Antone Succeeds" edited by Judith Kleinfeld and Siobhan Wescott. [Kleinfeld & Wescott 1993] This book is a compilation of presentations made at the First International Conference on Educating Children with Fetal Alcohol Syndrome hosted by the Northern Studies Program in the College of Liberal Arts at the University of Alaska in the spring of 1991. The conclusion chapter [Kleinfeld 1993] suggests "three optimistic messages":

  1. Negative stereotypes of alcohol-affected children are highly misleading
  2. Early diagnosis, early intervention, nurturant homes, and tailored educational programs for alcohol-affected individuals improve their quality of life
  3. There are specific educational strategies that help alcohol-affected children learn

For more information, you can also refer to http://pediatrics.medscape.com/govmt/CDC/MMWR/2001/06.01/mmwr5024.01/mmwr5024.01.html (Registration required to voew article)

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Bibliography

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Aase, J.M. (1990). Diagnostic Dymorphology. New York: Plenum

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Abel, E.L. (1984). Prenatal Effects of Alcohol. Drug and Alcohol Dependence, 14, 1-10.

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Alter, M.J. (1997). Epidemiology of Hepatitis C. Hepatology, 26, 62S-65S.

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