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]
BACK TO TOP
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:
-
Prenatal and/or postnatal growth retardation (weight
and/or length or height below the 10th percentile when corrected for gestational
age).
-
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).
-
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.
BACK TO TOP
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.
BACK TO TOP
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.
BACK TO TOP
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.
BACK TO TOP
MPZ
MPZ 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 is a now 5 Ѕ 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.
BACK TO TOP
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:
-
household and family environment
-
independent living and financial management
-
education
-
employment
-
physical abuse, sexual abuse and domestic violence
-
physical, social and sexual development
-
behavior management and mental health issues
-
alcohol and drug use
-
legal status and criminal justice involvement
-
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":
-
Negative stereotypes of alcohol-affected children
are highly misleading
-
Early diagnosis, early intervention, nurturant homes,
and tailored educational programs for alcohol-affected individuals improve
their quality of life
-
There are specific educational strategies that help
alcohol-affected children learn
For more information, you can also refer
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