FETAL ALCOHOL SYNDROME
Fetal Alcohol Syndrome, otherwise known as FAS
Before beginning this training module on FAS (Fetal Alcohol Syndrome), we should
define the word "syndrome." The dictionary defines syndrome as meaning the
following:
1 : a group of signs and symptoms that occur together and characterize a particular
abnormality
2 : a set of concurrent things (as emotions or actions) that usually form an identifiable
pattern
The following information comes from the National Organization on Fetal Alcohol
Syndrome and OnHealth-WebMd.
In 1973, researchers in the United States published a landmark report describing a pattern
of birth defects in children born to women who had consumed alcohol during their
pregnancy known as Fetal Alcohol Syndrome (FAS). FAS refers to a constellation of
physical, cognitive (AWARENESS & JUDEGEMENT) and behavioral abnormalities,
which can include, growth retardation, a distinct pattern of facial dysmorphology, and
mental retardation.
Fetal Alcohol Syndrome...
is the name given to a group of physical and mental birth defects that are the direct result
of a woman's drinking alcohol during pregnancy.
Fetal Alcohol Syndrome is a series of mental and physical birth defects that can include
mental retardation, growth deficiencies, central nervous system dysfunction, craniofacial
abnormalities and behavioral maladjustment's. Fetal Alcohol Effect is a less severe set of
the same symptoms.
All communities nationwide, and especially high-risk women in their childbearing years,
need better information about the dangers of drinking during pregnancy. But most health
care providers are unfamiliar with and untrained in the issues of substance abuse among
pregnant women. FAS/FAE is widely misdiagnosed and under diagnosed and less than
10% of medical schools require students to complete a course on the proper diagnosis and
referral of individuals with alcoholism and other drug addictions.
Training health care providers is an important step, but broader community education is
also vital. Many high-risk women do not receive adequate prenatal care, and a National
Center for Health Statistics study found that doctors appear less likely to tell a black
woman to quit drinking and smoking during pregnancy than they are to tell a white
woman. Pregnant black women were thirty percent more likely than white women to
report that they had never been told to quit drinking. (The New York Times,January 19,
1994)
If you drink wine, beer, or liquor when you are pregnant, your baby could develop FAS.
A baby with FAS can suffer from mental retardation, central nervous dysfunction, organ
dysfunction and facial abnormalities. These disabilities will last a lifetime. No amount of
alcohol has been proven safe to consume during pregnancy. FAS and FAE (Fetal Alcohol
Effects) are 100% preventable when a pregnant woman abstains from alcohol.
In 1991, The Journal of the American Medical Association reported that FAS is the
leading known cause of mental retardation. At least 5,000 infants are born each year with
FAS, or approximately one out of every 750 live births. Thirty to forty percent of babies
whose mothers drink heavily throughout pregnancy have the Syndrome. FAS/FAE is a
problem found in all races and socio-economic groups. FAS and FAE are widely under
diagnosed. Some experts believe between one third and two-thirds of all children in
special education have been affected by alcohol in some way.
FAS/FAE produces irreversible physical, mental and emotional effects. Behavioral and
mental problems of FAE children can be just as severe as those of FAS children. Many
children with FAS/FAE are not able to understand cause and effect relationships and
long-term consequences. The institutional and medical costs for one child with FAS are
$1.4 million over a lifetime.
What babies are "at risk" for FAS and FAE?
Whenever a mother drinks, her baby is at risk for Fetal Alcohol Syndrome or Fetal
Alcohol Effect. When a pregnant women drinks alcohol, her baby does too. It is not clear
whether there is a threshold amount of alcohol that must be consumed before damage to
the baby occurs. There is also no proof that small amounts of alcohol are safe.
Is there a cure for FAS?
There is no cure for Fetal Alcohol Syndrome. Once the damage is done, it cannot be
undone. However, FAS is the only cause of birth defects that can be completely
prevented.
How can FAS be prevented?
The easiest way for a woman to prevent FAS is to not drink during pregnancy.
Communities, schools, and concerned individuals can help to prevent FAS/FAE, through
education and intervention.
Strategies for parents and caregivers of FAS and FAE children
*Prepared by Patricia Tanner-Halverson, Ph.D.
Keys to working successfully with FAS/FAE children are structure, consistency, variety,
brevity and persistence. Because these children lack internal structure, caretakers need to
provide external structure for them. It is important to be consistent in response and
routine so that the child feels the world is predictable. Because of serious problems
maintaining attention, it is important to be brief in explanations and directions, but also to
use a variety of ways to get and keep their attention. Finally, we must repeat what it is we
want them to learn, over and over again.
SYMPTOMS OF FAS
Usually, FAS is diagnosed only when a child has the following major clinical
manifestations, or signs:
Growth retardation
Characteristic facial features, such as:
Small eyes with drooping upper lids
Short, upturned nose
Flattened cheeks
Small jaw
Thin upper lip
Flattened philtrum (the groove in the middle of the upper lip)
Central nervous system problems, including:
Mental retardation
Hyperactivity
Delayed development of gross motor skills such as rolling over, sitting up, crawling and
walking
Delayed development of fine motor skills such as grasping objects with the thumb and
index finger, and transferring objects from one hand to the other
Impaired language development
Memory problems, poor judgement, distractibility, impulsiveness
Problems with learning
Seizures
However, children affected by FAS may have any or all of the signs and symptoms listed
above, along with the following:
Decreased birth weight
Small skull
Hearing disorders
Studies have shown that the more severe the physical characteristics of FAS are in a
child, the more severe his or her mental impairment tends to be.
Secondary Conditions
Children born with FAS may develop secondary conditions as a result of their syndrome.
These secondary conditions can include the following:
Mental health problems such as attention deficit disorder, conduct disorder,
depression and psychotic episodes (see
Psychotic Disorders).
Problems in school, including higher rates of suspension and expulsion due to
difficulty getting along with others,
disobedience and truancy.
Trouble with the law. Those born with FAS may have problems controlling anger and
frustration, and problems understanding
the motives of others. This may lead to
violent behavior. As a result, teenagers and adults with FAS are more likely to be
involved with the criminal justice system than their peers are. Also, those with FAS can
be especially susceptible to
persuasion and manipulation, which may lead to
unwitting involvement in illegal activities.
Drug and alcohol abuse. More than one-third of those with FAS have problems which
require inpatient treatment for drugs and/or alcohol abuse at some time in their lives. (See
Drug Abuse and Alcohol Abuse.)
Difficulty holding a job and living independently.
Many FAS children:
Have difficulty structuring work time.
Show impaired rates of learning.
Experience poor memory.
Have trouble generalizing behaviors and information.
Act impulsively.
Exhibit reduced attention span or is distractible.
Display fearlessness and are unresponsive to verbal cautions.
Demonstrate poor social judgment.
Cannot handle money age appropriately.
Have trouble internalizing modeled behaviors.
May have differences in sensory awareness (Hypo or Hyper).
Language Production higher than comprehension.
Show poor problem solving strategies.
Effective strategies include:
Fostering independence in self-help and play.
Give your child choices and encourage decision-making.
Focus on teaching daily living skills.
Encourage the use of positive self talk
Have child get ready for next school day before going to bed.
Establish a few simple rules. Use identical language to remind them of the rules. "This is
your bed, this is where you are supposed to be."
Establish routines so child can predict coming events.
Give child lots of advance warning that activity will soon change to another one.
For unpredictable behavior at bedtime/mealtime, establish a firm routine.
Break their work down into small pieces so they do not feel overwhelmed.
Be concrete when teaching a new concept. Show them.
Discipline:
Set limits and follow them consistently.
Change rewards often to keep interest in reward getting high.
Review and repeat consequences of behaviors. Ask them to tell you consequences.
Do not debate or argue over rules already established. "Just do it."
Notice and comment when your child is doing well or behaving appropriately.
Avoid threats.
Redirect behavior.
Intervene before behavior escalates.
Avoid situations where child will be overstimulated.
Have child repeat back their understanding of directions.
Protect them from being exploited. They are naive.
Have pre-established consequences for misbehavior.
SOME STATISTICAL INFORMATION
What is Fetal Alcohol Syndrome?
Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE) refer to a group of
physical and mental birth defects resulting from a woman's drinking alcohol during
pregnancy. FAS is the leading known cause of mental retardation. Other symptoms can
include organ dysfunction, growth deficiencies before and after birth, central nervous
dysfunction resulting in learning disabilities and lower IQ, and physical malformities in
the face and cranial areas. In addition, children may experience behavioral and mental
problems, which progress into adulthood.
FAE is a lesser set of the same symptoms, which make up FAS. Babies affected by
alcohol can have any or all of these symptoms. FAS and FAE are widely underdiagnosed. Some experts believe that between 1/3 and 2/3 of all special education
children have been irreversibly affected by alcohol in some way. At least 5,000 infants
are born each year with FAS; another 50,000 children show symptoms of FAE.
No amount of Alcohol consumption during pregnancy is known to be safe. Recent studies
indicate that possibly as little as one drink during critical HOURS of brain formation in
the fetus can cause FAS or FAE.
FAS is the leading known cause of mental retardation, surpassing both Spina Bifida and
Down's Syndrome. (Journal of the American Medical Association, 1991)
At least one of every five pregnant women uses alcohol and/or other drugs. (Substance
Abuse and the American Woman, Center on Addiction and Substance Abuse, Columbia
University, June 5, 1996)
Alcohol produces by far the most serious neurobehavioral effects in the fetus when
compared to other drugs including heroin, cocaine and marijuana. Annual cost estimates
for FAS and related conditions in the United States range from $75 million to $9.7
billion. (Fetal Alcohol Syndrome: Diagnosis, Epidemiology, Prevention and Treatment,
Institute of Medicine, 1996)
The Centers for Disease Control and Prevention reported a sixfold increase in the
percentage of babies born with FAS over the past fifteen years. Since the Centers began
tracking FAS, the rate has increased form 1 case per 10,000 live births in 1979 to 6.7
cases per 10,000 live births in 1993. (The New York Times, April 7, 1995)
Over three times as many women used alcohol during pregnancy than used illegal drugs.
(National Institute on Drug Abuse, 1994)
Each year more than 5,000 are born with FAS and nearly 50,000 babies are born with
Fetal Alcohol Effects (FAE), a condition characterized by symptoms similar to but less
severe than FAS. (Public Health Education Information Sheet, March of Dimes, 1992)
Fewer that 57% of Americans under the age of 45 have even heard of FAS. Of those, less
than 25% can correctly identify it as a set of birth defects while the rest think it means
being born intoxicated or addicted to alcohol. (National Health Interview Survey, U.S.
Department of Health and Human Services, 1985)
An average of one to two reported drinks per day has been linked to decreased birthweight, growth abnormalities and behavioral problems. (Alcohol Problems in Women,
1984)
The probability of having a child with FAS increases with the amount and frequency of
alcohol consumed. Whenever a pregnant woman stops drinking, she reduces the risk of
having a baby with FAS. (Alcohol Health and Research World, The National Institute on
Alcohol Abuse and Alcoholism, 1995)
The latest estimate for the U.S. is a rate of 19.5 per 10,000 live births, although estimates
run as high as 30 per 10,000 - about 12,000 babies a year. (Substance Abuse and the
American Woman, Center on Addiction and Substance Abuse, Columbia University,
June 5, 1996)
A 100% misdiagnosis rate was reported in a Houston hospital study of 48 newborns
known to have alcoholic mothers. By age one, six of the infants had significant signs of
FAS but none had been diagnosed at birth. (Little, Bertis, Snell, Laura, 1990)
A federally funded study in four U.S. Southern communities found that only 65% of
women were asked by a physician or nurse about alcohol or drug use during their most
recent pregnancy. Further, although most of the women who were asked acknowledged
substance abuse, only 3% were referred to treatment. (Shelly Geshan, Southern Regional
Project on Infant Mortality, 1993).
A national panel convened by the Josiah Macy Jr. Foundation found that most doctors do
not even try to identify problems by asking patients questions about alcohol and drug
habits, and do not know how to respond if they do find evidence of dependency. The
panel called for an increase in mandatory training on substance abuse for medical
residents as the first step toward improving treatment. (The New York Times, February
14, 1996)
A National Center for Health Statistics study found that doctors appear less likely to tell
black women to quit drinking and smoking during pregnancy than they are to tell white
women. Pregnant black women were thirty percent more likely than white women to
report that they had never been told to quit drinking, and twenty percent more likely to
report that they had not been told to quit smoking. (The New York Times, January 19,
1994)
Diagnostic and Test Procedures
No definitive diagnostic tests exist to identify FAS. Diagnosis depends on a caregiver's
expertise with the specific characteristics associated with FAS. Experts think that, as a
result, FAS is widely under-diagnosed.
Treatment
Although there is no cure for FAS, children who are diagnosed early -- preferably by
preschool age -- have a better chance of overcoming the condition because from early on
their education can be designed to maximize their potential.
Conventional Medicine
Once a child's FAS-related developmental delays are documented, the child is eligible for
curriculum modifications, special education classes, supplemental classroom aids and
other services through the federal Individuals with Disabilities Education Act.
Because children with FAS are especially sensitive to disruption, a stable, loving home
environment is important. However, caring for a child with FAS can be enormously
stressful for a family because of the learning and behavioral problems associated with the
syndrome. Social services, such as respite care and stress- and behavior-management
services, may help families cope.
Prevention of the secondary conditions associated with FAS may be possible with
educational, health and psychological services for both the child and the family. This
often means working with a variety of professionals, including teachers, social workers,
psychologists, physicians and nurses.
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Multiple-Choice Questions
Click on the answer you think is correct.
1. FAS stands for:
a) Flawed Automobile Statistics
b) Fetal Alcohol Syndrome
2. FAS was first recognized as a birth defect in:
a) 1492
b) 1903
c) 1973
3. Fetal Alcohol Syndrome... is the name given to:
a) a group of physical and mental birth defects that are the direct result of a woman's
drinking alcohol during pregnancy.
b) Drunk babies
4. FAE is the acronym for:
a) Future Advertising Executives
b) Fetal Alcohol Effect
5. True or False: Fetal Alcohol Effect is a less severe set of the same symptoms as
FAS.
a) True
b) False
6. One of the hallmarks of FAS/FAE is that it is:
a) Somewhat preventable
b) Can be corrected with drugs
c) 100% preventable
7. True or False: Children with FAS/FAE can easily understand cause & effect and
long term consequences of their behavirors.
a) True
b) False
8. What babies are at risk for FAS and FAE?
a) Only babies from low income or poverty families.
b) ALL BABIES OF MOTHERS WHO DRINK ANY ALCOHOL ARE AT RISK!
c) Only babies from certain minority populations.
9. Is there a cure for FAS?
a) Yes
b) No
10. True or False: You can always recognize a FAS/FAE children by their unusual
facial features.
a) True
b) False
11. True or False: There is a definitive test to determine FAS/FAE.
a) True
b) False
12. In 1991, The Journal of the American Medical Association reported that FAS is
the leading known cause of ?.
a) Fat kids
b) Thin kids
c) Mental Retardation
d) Short kids