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

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 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 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

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 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/Content/FAS/fetal_alcohol_syndrome.asp **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

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 whodon’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.shtml • 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. 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 Fetal Alcohol Syndrome Prevention Program Team