Fetal Alcohol Spectrum Disorders: Screening, Diagnosis, and Intervention

1. Fetal Alcohol Spectrum Disorders:Screening, Diagnosis, and Intervention Carol Rangel, FASD Project Director - DHS DCFS carol.rangel@arkansas.gov

2. Objectives for Today • Become familiar with Pulaski County, Arkansas FASD Project • Increase awareness about FASD • Provide information to help prevent secondary disabilities and support families living with FASD

3. Pulaski County FASD Project • Funded by SAMHSA - contract between DCFS and Northrop Grumman for a period of 4 years 10 months – beginning February, 2008 ending in May, 2012 • Provide early and timely screening, diagnosis and interventions for children ages 0-7 who are in the states custody. • Provide and communicate comprehensive, coordinated and timely case planning, case management, and follow-up to insure appropriate care for children with FASD and their families in order to decrease secondary disabilities

4. Pulaski County FASD Project Key Partners • Pulaski County Juvenile Court • DHS • DCFS • DCCECE • UAMS • PACE • Partners for Inclusive Communities

5. Pulaski County FASD ProjectPulaski County Juvenile Court’s role: • Pulaski County Juvenile court make referrals to the project and encourage parent cooperation with the project • Pulaski County Juvenile Court receives results of FASD screening and diagnostic exam from the DCFS/FASD case manager • Pulaski County Juvenile Court reviews recommendations for services and orders any services not in place to be provided • Pulaski County Juvenile Court monitors services for the child through the review hearings

6. Pulaski County FASD Project – DHS/DCFS • Secondary DCFS Case Worker assigned to focus on FASD screening, assessments and case management for those diagnosed with an FASD • Coordinate with the DCFS primary case manager to assist in family team meetings, timely case planning, case management, and follow-up to insure appropriate care for children with FASD and their families

7. Pulaski County FASD ProjectScreening conducted by DCFS/FASD Case Manager • Photographs of the children are run through FAS Facial photographic screening tool – to determine face rank • Biological mother is interviewed to determine prenatal alcohol exposure • Birth records are obtained to look for growth deficit, CNS or developmental abnormality, or notes indicating dysmorphia • Family history is reviewed to determine if a sibling has been diagnosed with FAS/FASD, or mom has a confirmed drug or alcohol history

8. Pulaski County FASD ProjectDHS/Division of Child Care and Early Childhood Education (DCCECE) • The division is working with the project to help identify and work with quality accredited child care centers in Pulaski County who would be willing to care for/work with children who are identified with FASD as a result of this project. 

9. Pulaski County FASDProjectChildren Diagnosed via UAMS PACE Exam • As part of our project, the PACE team has added a FASD diagnostic evaluation for children who the DCFS/FASD case manager screens positive for FASD –Mother is invited to participate in the exam to provide vital information. • The Project for Adolescent and Child Evaluation (PACE) is a collaborative effort between the Division of Children and Family Services (DCFS) University of Arkansas for Medical Sciences (UAMS). All children entering the foster care system receive a PACE evaluation. The project seeks to remedy barriers to the provision of health care services for children in foster care, particularly the receipt of multidisciplinary, comprehensive health evaluations

10. Pulaski County FASDProjectChildren Screened/Diagnosed via UAMS PACE Exam • A full team evaluation includes a vision screening, hearing screening, cognitive assessment, academic assessment, behavioral/emotional assessment, medical/developmental evaluation, speech/language assessment, and feeding assessment when appropriate. Evaluations typically last 4-5 hours • The PACE team provides a full report to DCFS with recommendations for needed services for the child

11. UAMS Partners for Inclusive Communities • UAMS Partners for Inclusive Communities will provide consultation/skill-building to multiple providers working with children diagnosed through the project • UAMS Partners for Inclusive Communities will provide project evaluation

12. Pulaski County FASD Project • In summary our project hopes to work together with the courts, education system, medical providers, child care providers, caregivers, foster parents, and biological parents (if possible), and the community in order to: • 1. raise awareness about FASD • 2. find appropriate and early interventions for children • 3. do all we can to improve the quality of life and care for the children diagnosed with FASD through our project

13. Fetal Alcohol Spectrum Disorders FAS pFAS ARND ARBD

14. What is Fetal Alcohol Syndrome? • Set of mental, cognitive and neurobehavioral birth defects caused by exposure to alcohol during pregnancy • Greatest cause of intellectual deficit in the United States • Costly in human and economic terms

15. What is Fetal Alcohol Syndrome? • Permanent - irreversible • Often occurs with other diagnoses • 100% preventable • Early intervention helps prevent secondary disabilities

16. Fetal Alcohol Syndrome • Is a diagnosis • Alcohol disrupts typical brain growth • Specific findings: • Specific facial abnormalities • Growth deficits • Central Nervous System or Neurobehavioral Disorders

18. CDC Criteria (2004) Facial Abnormalities Smooth philtrum Lip philtrum guide 4 or 5 Thin vermillion Lip philtrum guide 4 or 5 Palpebral fissures 10th percentile or lower

19. Fig. 2: Palpebral fissure length. To measure palpebral fissure length, identify the inner corner or encanthion (en) and outer corner or excanthion (ex) for each eye. Have the patient look up so that ex can be seen clearly. With a clear flexible ruler held in the horizontal plane, measure the length of each ex-en interval immediately below the eye, being careful not to touch the eye or eyelashes. Plot the result on an appropriate nomogram chart to determine the percentile or standard deviation for each eye. Photo: Albert Chudley

20. Facial Features in FAS Over Time

21. Characteristic Facial Features in Children of Different Ethnicities

22. Growth in FAS

23. FAS and the Brain

24. The brain's Frontal Lobes control: judgement, inhibition, concentration, self-control, conscience, personality and emotional traits as well as cognition and memory, motor speech and movement skills.

25. HIPPOCAMPUS • The hippocampus is involved in memory, but its precise function is uncertain. Alcohol can change the fibers and cause cell reduction. Some persons with prenatal alcohol exposure have deficits in spatial memory and other memory functions associated with the hippocampus. The hippocampus also acts as a mood control center. Damage to the hippocampus can affect the ability to respond appropriately to emotions, such as anger.

26. The Corpus Callosum connects right and left sides to allow communication between the hemispheres.

27. Corpus CallosumThe corpus callosum connects the two hemispheres of the brain, allowing the left and right sides to communicate. Prenatal alcohol exposure can cause abnormalities such as thinning or complete absence of the corpus callosum. These abnormalities have been linked to deficits in attention, intellectual function, reading, learning, verbal memory, executive function, and psychosocial functioning.7 Corpus Callosum A. Magnetic resonance imaging showing the side view of a 14-year-old control subject with a normal corpus callosum; B. 12-year-old with FAS and a thin corpus callosum; C. 14-year-old with FAS and agenesis (absence due to abnormal development) of the corpus callosum.

28. What Else is Affected by Alcohol in Pregnancy? Hearing and Vision Heart and Kidneys Cleft Palate Liver Sinus Problems Skeletal Muscles Mild Facial Anomalies

29. Effects of Alcohol as a Teratogen on the Baby

30. It Takes Us Awhile to Understand • “Behold, thou shalt conceive and bear a son: and now drink no wine or strong drink”. (Judges 13:7) • “A ritual that forbade the drinking of wine by the bridal couple so that a defective child would not be conceived”. (Ancient Carthage) • “Infants born to alcoholic mothers sometimes had a starved, shriveled, and imperfect look”. (British House of Commons, 1834)

31. Fetal Alcohol Syndrome • First recognized by Lemoine of Nantes, France in 1968He presented his results at a national meeting in France and was literally booed off the stage. • Later independently discovered by Jones and Smith in 1973.They studied 8 related children all born with this disorder, all who had mothers who were chronic severe alcoholics.

32. Government and Policy Response 1973, term “FAS” coined in US 1981, First Surgeon General’s warning about the harmful effects of alcohol in pregnancy 1996, Institute of Medicine Report on the harmful effects of alcohol during pregnancy 2002, Congress mandates CDC to develop diagnostic criteria for FAS

33. Government and Policy Response 2004, CDC released their report on FAS diagnostic criteria and recommendation on prevention All children screened for FAS All women screened for alcohol use 2005, Second Surgeon General’s advisory on Alcohol use and Pregnancy Besides pregnant women, women considering or at risk for pregnancy should abstain from alcohol

34. Economic Costs of FAS • FAS alone is estimated to cost the United States nearly $4 billion each year. • The average lifetime cost for each child with FAS is almost $3 million. Increased costs

35. Economic Costs of FAS • One prevented case of FAS saves: • $130,000 in the first 5 years • $360,000 in 10 years • $587,000 in 15 years • More than $1 million in 30 years Increase savings through Prevention!!!!!

36. Alcohol During Pregnancy

37. When is it safe to drink alcohol during pregnancy? • No known safe time – brain develops throughout the pregnancy • No safe amount - alcohol is alcohol • Binge drinking is particularly harmful

38. Abstinence from Alcohol during Pregnancy is Recommended for Everyone • Effects are different with different mothers and babies • Stopping use at any time in pregnancy is helpful

39. Brain Nerves Brain Stomach Placenta Fetus Breast Heart Organs Liver Muscles Kidneys

40. Alcohol in Drinks B C A

41. FASD and Alcohol Drink = 12 ounces of beer, 5 ounces of wine, or 1.5 ounces of hard liquor = =

42. Energy Drinks

43. Energy Drinks

44. Alcopops

45. Countering the Myths about Alcohol and FAS Less than 1 drink per day in pregnancy is OK Drinking late in pregnancy is OK and makes labor easier Beer and wine are not alcohol, and thus are not a problem If I drank and have one child without FAS, I can drink and I won’t have another child with FAS If FAS doesn’t run in my family, my child won’t get FAS FAS is curable if diagnosed early

46. Even with Surgeon Generals’ Warnings… …the CDC reports 1 in 8 women continue to drink alcohol while pregnant.

47. More Arkansas Mothers Abuse Alcohol than Women without Children

48. Arkansas Mothers Abuse Alcohol at Rates Greater than Women Without Children With ChildrenWithout Children Alcohol Abuse 26% 17% (Women in Treatment 1998, Arkansas Department of Health) Poverty also increases risk – Mothers with less than $20,000 annual income have 27% greater risk for substance abuse. Women may first learn they have a problem with alcohol when pregnant.

49. Arkansas’ Garrett’s Law 2005 and amended 2007 • Mandates child maltreatment report if newborn or mother tests positive for illegal drugs • Intent is to protect child and gain family services • Mothers’ fears can be a barrier to services (many women discover they have an alcohol problem when pregnant)

50. Types of Drugs Used By Women Identified by Garrett’s Law (2005) • Marijuana 42.5% (59.6% SFY’08) • Alcohol* 18.5% (alcohol not reported ’08) • Cocaine 18.1% • Amphetamines 10.6% • Heroin 8.8% • Tranquilizers 6.7% • Methamphetamines 5.8% • Barbiturates 5.3% * Not required for reporting; often not tested for