Fetal Alcohol Syndrome

1
Fetal Alcohol Syndrome

• Department of Human Services, Public Health
  Division, Office of Family Health, Womens and
  Reproductive Health, FAS Prevention Program

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What Is Fetal Alcohol Syndrome?

• The Leading Preventable Cause of Mental
  Retardation

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Fetal Alcohol Spectrum Disorders

• FAS --the most severe diagnosis on the
  spectrum of alcohol related disorders
• FASD --Fetal Alcohol Spectrum Disorder
• ARBD (alcohol related birth defects)
• ARND (alcohol related neuro-developmental
  disorder)
• FAE (fetal alcohol effects)
• FAS (fetal alcohol syndrome)

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• FAS is 100 preventable if a woman does not drink
  alcohol while she is pregnant.

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FAS Facts

• First described 1968-72
• Dose-response effect---the more alcohol
• the higher the likelihood of FAS
• No known safe level of alcohol use
• during pregnancy
• Greatest contributor to preventable
• mental retardation

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FAS Facts

• Alcohol diffuses through placenta
• Concentration in fetal blood is the same as in
  the mothers blood within a few minutes
• The fetus is able to metabolize alcohol 10 as
  fast as the mother

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• Over half of all pregnancies
• in the United States
• are unplanned.

8

• Most women who drink
• alcohol will continue to drink
• until their pregnancy is
• confirmed--four to eight weeks
• after conception.
• (CD Summary Sept 2007)

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When Pregnancy Is Unknown

• What if a woman drinks before she knows shes
  pregnant?
• Embryonic Stage 3rd post conception week of
  pregnancy is considered the most critical for
  alcohol teratogens
• More severe features of FAS
• Avg of 3 drinks/day following conception (before
  pregnancy is confirmed), increases risk of
  having an FAS child

Santrock, J.W., Life Span Development, Brown
Publishers, 1986.
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Embryonic/Fetal Development
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Criteria for FAS Diagnosis

• A diagnosis requires the presence of all three of
  the following
• Documentation of three facial abnormalities
• smooth philtrum
• thin vermillion border
• small palpebral fissures
• Documentation of growth deficits
• Documentation of CNS abnormalities

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Facial Malformations

• Short palpebral fissures
• Abnormal philtrum
• Thin upper lip
• Hypoplastic midface
• Short nose

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Facial Features of FAS
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Changes Over Time

• Physical features
• Shape of nose
• Coarsening facial features
• Weight gain
• Cognitive skills
• Behavior

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Changes Over Time
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FAS Diagnosis

• To assist with differential diagnosis between
  FAS and environmental causes for CNS
  abnormalities it is important to obtain a
  complete and detailed history for the individual
  and his or her family.

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Difficulties Identifying FAS

• Doctors describe facial features differently/no
  consistency
• Lack of FAS knowledge among care providers
• Lack of uniform diagnostic criterion
• MD resistance/concerns stigmatization
• Many other diagnoses and conditions are related
  to FAS
• Absence of documentation of Mothers drinking
  habits in medical records

Streissguth, Ann. (1997). Fetal Alcohol
Syndrome A Guide for Families and Communities.
Paul H. Brooks Publishing Co., Baltimore, MD.
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A Hidden Disability

• FAS may be incorrectly labeled as a behavior
  disorder
• There may be no visible indicators of a
  disability
• Many cases of FAS undiagnosed
• FASDmany children have no facial abnormalities

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Criteria for Diagnosis

• Maternal alcohol use during pregnancy is NOT a
  requirement for diagnosis
• Growth Retardation
• Height/weight less than 10th percentile
• Intrauterine growth retardation and continued
  poor growth
• Often times this information is not known

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Growth Retardation

• History of growth deficits, even if resolved
• Confirmed prenatal or postnatal height or weight,
  or both, at or below the 10th percentile,
  documented at anyone point in time (adjusted for
  age, sex, gestational age, and race or ethnicity)
  

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Brain Development

• Documented small overall head circumference (OFC)
  
• Also known as microcephaly
• Includes head circumference at birth and over
  time
• At or below the 3rd or 10th percentile
• Use of the 10th percentile results in more
  false positives, use of the 3rd percentile
  results in more false negatives.

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Brain Changes

• Clinically significant brain abnormalities
  observable through imaging techniques
• Reduction in size of brain, areas of the brain
• Change in or absence of corpus callosum
• Change in cerebellum or basal ganglia
• Other structural abnormalities that may not
  necessarily result in functional deficits

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CNS Abnormalities
Neurodevelopmental Disorders

• Memory problems
• Attachment disorder
• Impaired motor skills
• Learning disabilities
• Problems with reasoning and judgment
• Inability to discern consequences of actions
• Intellectual impairment

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Developmental Disabilities

• ADHD/ADD
• Speech/Language Disorders
• Difficulties with feeding
• Tactile dysfunction/overly stimulated
• Cognitive or intellectual deficits
• Delayed development
• Impaired visual skills
• Neurosensory hearing loss

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Developmental Disabilities

• Social skills
• Lack of stranger fear
• Naiveté and gullibility
• Immaturity
• Executive functioning deficits
• Reasoning, judgment, planning ahead

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Motor Functioning Delays

• For infantspoor suck, feeding difficulties
• Delayed motor milestones
• Difficulty writing or drawing
• Balance problems
• Poor dexterity

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Changes in Delays Across Development

• Infancy and Preschool years
• Facial features
• Delays in feeding, motor delays
• Adolescence and Adulthood
• Mental Health problems
• Inability to achieve independence
• Criminal activity

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Outcomes

• Outcomes vary greatly among individuals
• Diagnosis not an endpoint
• Co-occurring mental disorders
• Likely to need services throughout life

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Positive Outcomes
Children with FAS tend to

• Be caring and creative
• Often be determined and eager to please
• Respond well to structure, consistency and close
  supervision
• Respond well to concrete communication

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Negative Outcomes
Children with FAS may have

• Disrupted school experiences
• Legal problems
• Incarceration
• Mental health problems
• Substance abuse problems
• Inappropriate sexual behavior
• Dependence, unemployment

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Protective Factors

• Stable and nurturing home environment
• Early diagnosisby 6 years of age
• Absence of exposure to violence
• Few changes in caretaking placements
• Eligibility for social and educational services

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Foster Care System

• Many foster and adoptive families do not receive
  education about FAS
• The childs family history is often unknown
• Prevalence of foster children estimated to be 10
  times greater than in the general population

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Foster Care System

• Social service workers, foster and adoptive
  parents are often not educated about the
  long-term effects of FAS.
• Training should include education about effects
  and developmental needs of children with FAS.

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Appropriate Services

• Neuropsychological Assessments
• Early Intervention (Age 0 to 3)
• Special Education Services
• Parent and Caregiver Education
• Physical, Speech and Language and Occupational
  Therapies
• Social Skills training

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Cost of FAS in OregonBased on 1/1000 est.

• Estimated annual cost of Fetal Alcohol Spectrum
  Disorder in Oregon
• 83.3 million
• Estimated annual cost of FAS in Oregon
• 68.3 million

Larry Burd, Ph.D. , University of North Dakota,
School of Medicine http//www.online-clinic.com/C
ontent/FAS/fetal_alcohol_syndrome.asp The Lewin
Group, article for publication FAS Cost
Estimates by State, 2006.
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FAS in Oregon

• Oregons Prevalence Rate
• Approximately 48,000 babies are born each year in
  Oregon
• Approximately or 1 out of every 2,000 babies is
  born with FAS in Oregon
• Approximately 24 babies are born each year in
  Oregon with FAS
• For ARND, the prevalence is 8 out of every 1,000
  babies

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Be Aware of.

• Children with FAS/FASD may have trouble
  expressing themselves
• Body language--know warning signs for
  frustration, sadness, anger and other emotions
• Problem concepts including decision-making, time,
  impulsiveness and distinguishing between public
  and private behaviors.

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What Works in the Classroom

• Place child near the front of the room decrease
  distractions.
• Allow student to have short breaks.
• Create borders such as armrests, footrests and
  beanbag chairs.
• Have child perform one task at a time.
• As assignments become more difficult, give
  deadlines and check on progress.

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In The Classroom

• Provide child with copy of notes.
• Behavior problems more apparent in grade school.
  Diffuse situations calmly, move into a new
  activity.
• Make eye contact, repeat things, use short
  instructions.
• Be prepared for inconsistent performance,
  frustration with transitions and the need for
  individual attention.

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Other Strategies

• Use visuals, concrete examples, hands-on
  learning.
• Encourage success, reward positive behavior with
  praise or incentives.
• Middle school students should shift academic
  learning to daily living and vocational skills.

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Key Issues

• Information needed on neuro-developmental effects
  of prenatal exposure to alcohol
• Improvements in clinical assessment tools
• All children be screened for FASshould be
  routine
• Better communication between doctors, correct
  terminology for diagnosis
• Service agencies must qualify children with FAS
  who dont meet eligibility requirements.

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Their Future Depends On Us

• Research and resources needed to identify/treat
  women at risk for alcohol-exposed pregnancies.
• Need awareness about dangers of drinking alcohol
  during pregnancy and FAS.

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Summary

• Fetal Alcohol Syndrome (FAS) is the leading cause
  of preventable mental retardation.
• Awareness about dangers of drinking alcohol
  during pregnancy can help to prevent FAS.
• Consistency in diagnoses can lead to better
  outcomes for children with FAS.

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Resources

• NOFAS---website
• http//www.nofas.org/about/CDC
• Dont Open This---website
• http//www.dontopenthis.org/
• Centers for Disease Control (CDC)---website
• http//www.cdc.gov/ncbddd/fas/

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Resources continued

• Oregon Family Support Network,
• 1-800-323-8521.
• DHS Website---http//www.oregon.gov/DHS/ph/wh/fas.
  shtml
• Northwest Portland Area Indian Health Board,
  Suzie Kuerschner, 503-228-4185 www.npaihb.org

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Book Resources

• Fetal Alcohol SyndromeA Guide for Families and
  Communities ---by Ann Streissguth
• Damaged Angels ---by Bonnie Buxton
• The Broken Cord ---by Michael Dorris
• The Best I Can BeLiving with Fetal Alcohol
  Syndrome Effects ---by Jodee Kulp
• Recognizing and Managing Children With Fetal
  Alcohol Syndrome/Fetal Alcohol Effects A
  Guidebook ---by Brenda McCreight, Ph.D.

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References

• Burd, Larry, Ph.D. , University of North Dakota,
  School of Medicine http//www.online-clinic.com/C
  ontent/FAS/fetal_alcohol_syndrome.asp.
• Hymbaugh, K., Miller, L.A., Druschel, C.M.,
  Podvin, D.W., Meaney, F.J., Boyle, C.A., and The
  FASSNet Team, (2002). A Multiple Source
  Methodology for the Surveillance of Fetal Alcohol
  Syndrome The Fetal Alcohol Syndrome
  Surveillance Network (FASSNet), Teratology,
  66S41-S49.
• "The International Classification of Diseases,
  9th Revision, Clinical Modification" (ICD-9-CM),
  National Center for Health Statistics and Centers
  for Medicare and Medicaid Services, Sixth
  Edition, October 1, 2007.
• The Lewin Group, article for publication FAS
  Cost Estimates by State, 2006.
• Santrock, J.W., Life Span Development, Brown
  Publishers, 1986.

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References

• Streissguth, Ann (1997). Fetal Alcohol Syndrome
  A Guide for Families and Communities. Paul H.
  Brooks Publishing Co. Baltimore, MD.
• Fetal Alcohol Syndrome Guidelines for Referral
  and Diagnosis, National Center on Birth Defects
  and Developmental Disabilities, Centers for
  Disease Control and Prevention, Department of
  Health and Human Services, National Task Force on
  FAS and FAE. July, 2004.
• Project CHOICES Research Group. Alcohol-exposed
  pregnancy characteristics associated with risk.
  Am J Prev Med 200223166-173

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Fetal Alcohol Syndrome Prevention Program Team

• Julie McFarlane, MPH
• Womens Health Manager
• 971-673-0365
• Lesa Dixon-Gray, MSW-
• MPH, Program Coordinator
• 971-673-0360
• Emily Havel
• Medical Records Consultant
• 971-673-0374

• Barbara Pizacani, PhD- RN,
• Epidemiology Consultant
• 971-673-0605
• John Anderson
• Research Analyst
• 971-673-1277