Fetal Alcohol Syndrome

1. Fetal Alcohol Syndrome
Department of Human Services, Public Health Division, Office
of Family Health, Women’s and Reproductive Health, FAS
Prevention Program

2. What Is Fetal Alcohol Syndrome?
The Leading Preventable
Cause of Mental
Retardation

3. 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)

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

5. 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

6. FAS Facts
 Alcohol diffuses through placenta
 Concentration in fetal blood is the
same as in the mother’s blood
within a few minutes
 The fetus is able to metabolize
alcohol 10% as fast as the mother

7. 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)

9. When Pregnancy Is Unknown
 What if a woman drinks before
she knows she’s 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.

10. Embryonic/Fetal Development

11. 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

12. Facial Malformations
 Short palpebral
fissures
 Abnormal
philtrum
 Thin upper lip
 Hypoplastic
midface
 Short nose

13. Facial Features of FAS

14. Changes Over Time
 Physical features
 Shape of nose
 Coarsening facial features
 Weight gain
 Cognitive skills
 Behavior

15. Changes Over Time

16. 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.

17. 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 Mother’s
drinking habits in medical records*
*Streissguth, Ann. (1997). Fetal Alcohol Syndrome: A Guide for Families
and Communities. Paul H. Brooks Publishing Co., Baltimore, MD.

18. 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
 FASD—many children have no
facial abnormalities

19. 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

20. 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)

21. 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.

22. 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

23. CNS Abnormalities
 Memory problems
 Attachment disorder
 Impaired motor skills
 Learning disabilities
 Problems with reasoning and judgment
 Inability to discern consequences of
actions
 Intellectual impairment
Neurodevelopmental Disorders

24. 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

25. Developmental Disabilities
 Social skills
– Lack of stranger fear
– Naiveté and gullibility
– Immaturity
 Executive functioning deficits
– Reasoning, judgment, planning
ahead

26. Motor Functioning Delays
 For infants—poor suck, feeding
difficulties
 Delayed motor milestones
 Difficulty writing or drawing
 Balance problems
 Poor dexterity

27. 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

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

29. Positive Outcomes
 Be caring and creative
 Often be determined and eager to
please
 Respond well to structure,
consistency and close supervision
 Respond well to concrete
communication
Children with FAS tend to:

30. Negative Outcomes
 Disrupted school experiences
 Legal problems
 Incarceration
 Mental health problems
 Substance abuse problems
 Inappropriate sexual behavior
 Dependence, unemployment
Children with FAS may have:

31. Protective Factors
 Stable and nurturing home
environment
 Early diagnosis—by 6 years of age
 Absence of exposure to violence
 Few changes in caretaking placements
 Eligibility for social and educational
services

32. Foster Care System
 Many foster and adoptive families
do not receive education about FAS
 The child’s family history is often
unknown
 Prevalence of foster children
estimated to be 10 times greater
than in the general population

33. 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.

34. 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

35. Cost of FAS in Oregon
Based on 1/1000 est.
*Larry Burd, Ph.D. , University of North Dakota, School of Medicine
http://www.online-clinic.com/Content/FAS/fetal_alcohol_syndrome.asp
**The Lewin Group, article for publication: FAS Cost Estimates by State, 2006.
 Estimated annual cost of Fetal
Alcohol Spectrum Disorder in
Oregon:
– $83.3 million*
 Estimated annual cost of FAS in
Oregon
– $68.3 million**

36. FAS in Oregon
 Oregon’s 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

37. 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.

38. 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.

39. 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.

40. 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.

41. Key Issues
 Information needed on neuro-developmental
effects of prenatal exposure to alcohol
 Improvements in clinical assessment tools
 All children be screened for FAS—should be
routine
 Better communication between doctors, correct
terminology for diagnosis
 Service agencies must qualify children with FAS
who don’t meet eligibility requirements.

42. 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.

43. 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.

44. Resources
 NOFAS---website
– http://www.nofas.org/about/CDC
 Don’t Open This---website
– http://www.dontopenthis.org/
 Centers for Disease Control (CDC)---website
– http://www.cdc.gov/ncbddd/fas/

45. Resources continued
 Oregon Family Support Network,
1-800-323-8521.
 DHS Website---
http://www.oregon.gov/DHS/ph/wh/fas.s
html
 Northwest Portland Area Indian Health
Board, Suzie Kuerschner, 503-228-4185
www.npaihb.org

46. Book Resources
 Fetal Alcohol Syndrome—A Guide for Families
and Communities ---by Ann Streissguth
 Damaged Angels ---by Bonnie Buxton
 The Broken Cord ---by Michael Dorris
 The Best I Can Be—Living 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.

47. References
Burd, Larry, Ph.D. , University of North Dakota, School of Medicine
http://www.online-
clinic.com/Content/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, 66:S41-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.

48. 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
2002;23:166-173

49. Fetal Alcohol Syndrome
Prevention Program Team
Julie McFarlane, MPH
Women’s 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