1. Fetal Alcohol Syndrome
My history---Medical Records Consultant and Abstractor for the Fetal Alcohol Syndrome Prevention Program. A 5 year study to determine prevalence of FAS in Oregon.
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)
Fetal Alcohol Syndrome
Fetal Alcohol Effects
Fetal Alcohol Spectrum Disorder
Alcohol Related Neurodevelopmental Disorder
Alcohol Related Behavioral Disorder

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
More ETOH consumed the greater the effects seen.
No clear threshold (minimum amount of alcohol to produce an effect) has been defined.
Some controversy surrounding this however:
CDC 1997 “even low to moderate alcohol use has been shown to negatively impact birth outcome, independent of other risk factors”
NIAA says

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.
Project CHOICES Research Group. Alcohol-exposed pregnancy: characteristics associated with risk. Am J Prev Med 2002;23:

8. alcohol will continue to drink until their pregnancy is
Most women who drink
alcohol will continue to drink
until their pregnancy is
confirmed--four to eight weeks
after conception.
(CD Summary Sept 2007)
CD Summary, Oregon Public Health Division, DHS, September 17, 2007, Vol. 56, No. 19
Children born to women who stop drinking at any point during their pregnancy have better outcomes than those who continue to drink throughout pregnancy.

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
TERATOGENS ARE ENVIRONMENTAL VS. GENETIC.
TER-AH-TOE-GENS
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
FAS is most accurately diagnosed between the ages of 3 and 12 years.
Vermillion border---upper lip
Palpebral fissures---the distance between the two outer corners of the eyes
CNS---Central Nervous System
CNS Abnormalities---Structural, Neurological, Functional
Structural—OFC small at or below 10th percentile OR Clinically significant brain abnormalities observable through imaging.
Neurological---problems not due to a postnatal insult or fever, or other soft neurological signs outside normal limits.
Functional—Global cognitive deficits or functional deficits below 16th precentile in at least 3 of the following: cognitive, executive, motor, attention, social or sensory, language, memory, etc.
GROWTH DEFICITS—any history of growth deficits, even tho they may be resolved. They do not need to be present at time of diagnosis.
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.)

12. Facial Malformations Short palpebral fissures Abnormal philtrum
Thin upper lip
Hypoplastic midface
Short nose
Pal--pee—bruhl fissures
FACIAL MALFORMATIONS
(more than one, but not necessarily all)

13. Facial Features of FAS
Fetal Alcohol Syndrome & Effect Support Network of Novia Scotia. P.O. Box 161 Kentville, Nova Scotia B4N 3W4 Phone: (902)

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.
Growth retardation and growth deficiencies occur in children, adolescents and adults for a great many reasons. Some of them: insufficient nutrition, poor sucking responses who experience failure to thrive. Several genetic disorders result in specific growth deficiencies, such as dwarfism.

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*
(absence of notations of use 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
Also labeled a Hidden Disability because of the subtlety of the dysmorphia and good basic language skills (e.g., vocabulary and syntax) of many affected individuals. (cite: CDC’s FAS Guidelines for Referral

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
LACK OF CONFIRMATION OF ALCOHOL USE DURING PREGNANCY SHOULD NOT RULE OUT AN FAS DIAGNOSIS IF ALL OTHER CRITERIA ARE PRESENT. Unknown prenatal alcohol exposure is okay.
Low birth weight Babies born weighing grams have a low birth weight. Babies born weighing less than 1500 grams have a very low birth weight. They may or may not have intrauterine growth retardation (IUGR), depending on their gestational age.
If an infant is born prematurely, the low weight may be appropriate for gestational age (AGA) and the infant may not have IUGR. On the other hand, an infant may be born at term weighing less than 2500 grams; that infant is small for gestational age (SGA) and has IUGR.

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)
Growth Deficits do not need to be present at time of diagnosis.

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.
Important to know that if a baby has a small head circumference this does not necessarily mean he/she has FAS. OFC is generally measured up to age 36 months. Large and small head size can be inherited by parents.
A small head circumference can mean several things. Her biological parents may tend to have smaller than average (the 50th percentile) head sizes, so that the baby's head measurements simply reflect her genetic heritage. However, it may also mean that her brain is not growing well during this crucial period of the brain growth spurt that lasts until 2 years of age. If she is a preterm baby, it would be the ideal that her head circumference moderately exceed her growth percentiles for weight and length, indicating that her brain was experiencing "catch up growth" after the challenges her early life in the hospital.
Generally, head circumferences at birth range from 13 to 15 inches, or 32 to 38 centimeters. The 3rd percentile is generally below 32 centimeters.
Chromosomal disorders Some conditions, which involve abnormalities at the chromosomal level, are associated with growth patterns that differ from those of children without chromosomal abnormalities. It is assumed that these differing growth patterns represent altered growth potential related to the underlying chromosomal abnormality. Examples of conditions related to chromosomal aberrations include Prader-Willi syndrome, Cornelia deLange syndrome, Turner syndrome, and trisomy 21 (also called Down syndrome).
***For public health reasons of capturing the largest number of children who might need services, the 10th percentile strikes a balance among criteria used in other diagnostic systems. Use of the 10th percentile results in more false positives, while use of the 3rd percentile results in more false negatives.
Consistent with poor brain development, it was determined that head circumference should be included as a CNS Parameter rather then a growth parameter.

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. Neurodevelopmental Disorders
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
Morphogenesis-- is concerned with the shapes of tissues, organs and entire organisms and the positions of the various specialized cell types.

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
Attention and Hyperactivity Problems: described by adults as “busy”, inattentive, easily distracted, difficulty calming down, overly active, difficulty completing tasks, and or trouble with transitions. Parents might report inconsistency in attention from day to day—(“ON days and “OFF” days.)

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. Children with FAS tend to:
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

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

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
Many FASD’s aren’t eligible

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
A recent study estimated that the prevalence of children with FAS or a related disorder in the foster care system is 10 times that of the general population (143.) Staff members are generally not knowledgeable about FAS, do not understand the impact of the child’s having FAS, or do not communicate the child’s FAS to other service systems. As a result, foster and adoptive families are most often not educated about the long-term effects and are unprepared to meet their child’s needs. CITATION: CDC’s FAS: Guidelines for Referral and Diagnosis. Page 23.

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.
Foster parents and adoptive parents are often unprepared to meet the 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
Children with FAS tend to respond well to structure, consistency, concrete communication and close supervision.

35. Cost of FAS in Oregon Based 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**
  The lifetime cost of one child with FAS can be 2 million dollars.
*Larry Burd, Ph.D. , University of North Dakota, School of Medicine
**The Lewin Group, article for publication: FAS Cost Estimates by State, 2006.

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
For Oregon’s prevalence 2 out of every 4, this statement is a provisional rate - to feel that it's accurate, we'd have to do another round or two to verify our results... We know we missed kids...
In the United States, the prevalence rate of FAS is approximately 1 to 3 out of every 2000 babies.
ARND—Alcohol Related Neurodevelopmental Disorder
Full-blown FAS, for FASD and kids being exposed by substances, the number is much bigger...

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.
Taking notes can be difficult, child may focus more on writing than the context of the lecture. Because handwriting is often poor, a computer may be a better way to complete assignments.
A slight bump from a fellow student feels like a push to someone with FAS/FASD. This may result in an outburst or fight.
Punishment is not always the best answer since FAS/FASD children may not understand why they are being punished.

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.
If one technique is not successful, try another.
Children with FAS/FASD can learn-they just need to use different paths to get there. Positive reinforcement should be immediate

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.
Particular emphasis should be placed on finding the unique aspects of FAS that will help differentiate it from other birth defects or developmental disabilities, or both.
Particularly in terms of racial and ethnic variations and age.
As physicians and allied health professionals become educated about this disorder, screening for FAS should become routine.
Better communication between obstetricians, gynecologists, and pediatricians is needed to improve documentation on prenatal alcohol use. This would help with the diagnosis of prenatal alcohol exposure in the child and could help identify women at risk for future alcohol-exposed pregnancies.

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.
2. And how the condition affects children and their families is essential. A key avenue to avoiding FAS is active promotion of programs to increase awareness of the dangers of drinking alcohol during pregnancy and promotion of prevention activities that increase understanding of the risks of alcohol as well as the risks for an alcohol-exposed pregnancy.

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
Centers for Disease Control (CDC)---website

45. Resources continued Oregon Family Support Network, 1-800-323-8521.
DHS Website---
Northwest Portland Area Indian Health Board, Suzie Kuerschner,

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.
Guide Review - Book Review: Damaged Angels
From the book cover: "Part heartfelt memoir, part practical guide, 'Damaged Angels' recounts Bonnie Buxton's years-long struggle to raise a child whose biological mother drank alcohol during pregnancy."
The Broken Cord –The Broken Cord should be required reading for all medical professionals and social workers, and especially for pregnant women, and women who contemplate pregnancy, who may be tempted to drink. -- The New York Times Book Review
When Michael Dorris, 26, single, working on his doctorate, and part Indian himself, applied to adopt an Indian child, his request was speedily granted. He knew that his new three-year-old son, Adam, was badly developmentally disabled; but he believed in the power of nurture and love. This is the heartrending story, full of compassion and rage, of how his son grew up mentally retarded, a victim of Fetal Alcohol Syndrome whom no amount of love could make whole. The volume includes a short account of his own life by the 20-year-old Adam, and a foreword by Dorris' wife, the writer Louise Erdrich. The Broken Cord won a National Book Critics Circle Award in The Best I Can Be--A young teen with Fetal Alcohol Effects challenges the world to peer inside her life and brain. Through her own writings the reader is taken on a life changing journey that will impact their thinking about how to help and understand children with brain damage due to Fetal Alcohol.

47. References
Burd, Larry, Ph.D. , University of North Dakota, School of Medicine
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:

49. Fetal Alcohol Syndrome Prevention Program Team
Julie McFarlane, MPH
Women’s Health Manager
Lesa Dixon-Gray, MSW-
MPH, Program Coordinator
Emily Havel
Medical Records Consultant
Barbara Pizacani, PhD- RN,
Epidemiology Consultant
John Anderson
Research Analyst