Evike Goudreault Coordinator of Special Needs Services CBHSSJB

1. Addressing the impact of prenatal alcohol consumption. Evike Goudreault Coordinator of Special Needs Services CBHSSJB Montreal, Qc January 15-17, 2013

2. OBJECTIVES To understand the terminologyand characteristicsof FASD; To understand the factors related to the identificationanddiagnosisof FASD; To begin to understand how FASD impacts the Cree Nationand what we can do.

3. FACTS AND STATS The impact of prenatal alcohol consumption over a lifespan.

4. Alcohol A colourless, volatile flammable liquid. It is used as a solvent, in drugs and cleaning products, explosives and intoxicating beverages. Alcohol is a “teratogen” – a substance that causes permanent birth defects.

5. Alcohol Thiladomide vs Both are teratogenes but alcohol causes invisible disabilities.

6. Ethanol crosses the placenta FREELY

7. Pathway of alcohol through the mother to the fetus. Alcohol enters body through the mouth and into the stomach…

8. …is absorbed through the intestine and enters the mother’s bloodstream… …then passes through the placenta and is carried through the umbilical cord to fetus. It finally enters the blood circulation of the fetus.

9. “Alcohol produces serious effects in the brain of the developing child. These effects from alcohol are more serious than effects from heroin, cocaine and marijuana.” - American Institute of Medicine “FASD is considered to be the leading cause of development disabilities and mental retardation world-wide.” - Journal of FAS International 2004; Roberts and Nanson 2000

10. Fetal Alcohol Spectrum Disorders

11. Prenatal Alcohol Exposure Apparently normal child FASD pFAS(Partial FAS) Death ARBD (Alcohol-related birth defects) ARND(Alcohol-related neurodevelopmental disorders)

12. FAS ARND

13. Alcohol-Related Neurodevelopmental Disorder Confirmed maternal alcohol exposure; Evidence of impairment in 3 or more of the following central nervous system domains: Attention deficit Memory Adaptive behavior Hyperactivity Social skills Brain structure Abstract reasoning Executive functioning Hard and soft neurologic signs Cognition IQ < 70 Academic achievement Communication

14. Women drinking alcoholic beverages during pregnancy. The sole cause of FASD is Consumption of alcohol prior to pregnancy; FASD is NOT caused by Alcohol use after child is born; Paternal intake of alcohol.

15. For the guys: Biological fathers cannot cause FASD But studies show that women who are with partners who drink are more likely to drink during their pregnancy. Future father’s role: Support the woman’s choice not to drink during her pregnancy.

16. FACTORS THAT DETERMINE THE LEVEL OF DAMAGE

17. THE DOSE OF ALCOHOL IS IMPORTANT

18. NOamount is absolutely dangerous. NOamount is absolutely safe. MOSTdangerous pattern seems to be high dose binges once or twice a week.

19. What constitutes a drink? Each of these contains about the same amount of alcohol (.48 oz. pure alcohol) Beer can Wine glass Shot glass 1.2 oz. x 40% 12 oz. x 4% 4 oz. x 12%

20. Timing is an important factor The first 10 days, prior to implantation, arelow risk Betweenweek 2 and week 12 is very high risk for major malformations including brain damage Thelast 6 monthsare high risk for continuing impacts on brain and on growth

21. Critical periods in human development Week 16 Week 5 Week 6 Week 38 Week 8 Week 4 Week 3 Central nervous system Heart Upper limbs Eyes Lower limbs Teeth Palate Extended genitalia Ears = Major congenital anomalies = Functional defects & minor congenital anomalies

22. During the 1st semester, alcohol may: Cause serious damage to the developing brain; Disrupt normal cell migration; Affect vital organs (heart, liver and kidneys); Cause facial malformations; Provoke miscarriage.

23. During the 2nd semester, alcohol may: Affect the development of the brain; Provoke miscarriage that may put the mother’s life in danger; Damage muscles, skin, teeth, glands and bones;

24. During the 3nd semester, alcohol may: Interrupt the development of the brain and lungs; Prevent normal weight gain; Provoke a premature birth.

25. Factors that determine the level of damage Amount of alcohol consumed Pattern of consumption (daily vs binging) Frequency of use Timing of exposure during fetal development Fetal and maternal genetic factors General living conditions during pregnancy Mother’s tolerance for alcohol; her size, age and weight

26. Understanding alcohol consumption during pregnancy Alcohol is a commonly used, legal and available substance not generally thought of as a powerful drug capable of causing harm to an unborn child. High numbers of pregnancies are unplanned (50-70% according to research)

27. Women who consume a lot of alcohol often have irregular menstrual cycles and may not recognize the signs of pregnancy, such as nausea, as being related to their pregnancy. Male partners or friends may contribute to a pregnant mother’s drinking because they do not want to lose their drinking partner. Partner abuse = stress and may increase drinking. Mothers may be unaware of their pregnancies in the early weeks

28. Fetal Alcohol Syndrome was first identified as a medical condition in 1973. “Behold, thou shalt conceive and bear a son: and now drink no wine or strong drinks.” - Judges 13:7 1500 in EuropeFrancis Bacon warned against using alcoholic beverages during pregnancy 1500 in CanadaBefore Europeans came to North America, Canada was totally bone dry and its inhabitants were abstinent.

29. Historical references to alcohol consumption in Canada Early 1800sAlcohol is introduced in the Native economy by Northwest Company.

30. World Health Organization (WHO) FASD is now acknowledged by the World Health Organization as the leading recognized cause of intellectual disability in the Western World.

31. STATS

32. Canadian stats on birth defects 4500 4000 3500 2000 1500 1000 500 0 SpinaBifida HIVInfection DownSyndrome FASD

33. Prevalence The percentage of the population having specific disorder at a specific moment in time. Population of Canada33,200,000 IFthe prevalence of FASD = 1/100* THENthe prevalence of FASD =332,000 *CDC “guestimate” for the United StatesWebinar Clarren & Loock 2011

34. Incidence The number of new cases of a disorder that will occur over a specific period of time. (i.e. newborns) Births in Canada (2008) 364,300 IFthe incidence of FASD = .9/100* THENthe incidence of FASD = 3,279 *CDC “guestimate” for the United StatesWebinar Clarren & Loock 2011

35. Incidence/Prevalence rates in Canada Considerations Low incidence and prevalence rates could mean: Prevention is working or there is low identification of the disease

36. Prevalence & Incidence of FASD in various populations

37. Full FAS: 0.33 – 2 per 1000 [~1:500] • Full FAS (In-school): 2 – 7 per 1000* [0.7%] • Full FAS (Foster care): 10 – 15 per 1000** [1.5%] • FASD:9 per 1000 [1%] • FASD (In-school): 20 – 50 per 1000 [5%] • FASD (BC)*: 190 per 1000*** [19%] Every hour, two children are born brain damaged due to alcohol consumption during pregnancy *May, 2009; **Astley, 2009; ***Robinson, 1986CAPHC FASD Update 2010

38. Provincial statistics • Manitoba study, (Fuchs, Burnside, Marchenski, & Mudry, 2005) found 17% of children in foster care were affected by FASD. • In an Ontario study involving 28,000 students, 21.4% are receiving Special Education Services, most of them because of prenatal exposure to alcohol.

39. Cree Nation • 900 • individuals (aged 0-29) identified as having special needs • 80% • mothers confirmed alcohol consumption at some point during pregnancy • 720 • Individuals identified as having special needs, possibly exposed to alcohol during pregnancy

40. Under-diagnosed • FASD is under-recognized and often goes undiagnosed; it is difficult to be certain how many individuals have FASD • 720 • 3 • exposed • diagnosed

41. FASD comes with lifelong costly disabilities • $1.8 million for one particular person with FAS

42. Annual direct cost of FASD in Canada 6.2 billion CA$ every year • 13% Others • 24% Education • 14% Correctional services • 19% Social services • 30% Healthcare

43. Fetal Alcohol Syndrome In screening for FAS, a doctor looks at: Prenatal maternal alcohol use; Growth and development disabilities; Specific physical characteristics; Damage to the brain and central nervous system

44. Children with FAS are small and underweight Photo: courtesy of Dr. Denis Lamblin

45. Can we screen for growth? • Most children who are absolutely growth deficient do not have FASD • Most children with FASD have no individual evidence of growth deficiency

46. Facial characteristics in FAS in the young child Discriminating features Associated features Microcephaly Epicanthal folds Short palpebral fissure Low nasal bridge Minor ear anomalies Indistinct philtrum Micrognathia Thin upper lip Project Cork Institute 1994

47. Dysmorphic features • Indistinct philtrum • Thin upper lip • Palpebral fissure length Palpebral Fissure Length endocanthion to exocanthion Source:Astley, S.J. 2004. Diagnostic Guide for Fetal Alcohol Spectrum Disorders: The 4-Digit Diagnostic Code, Third Edition. Seattle: University of Washington Publication Services, p. 114. Lip-Philtrum Guide 2 Lip-Philtrum Guide I

48. Can we screen for facial features? • When and only when the eye slits are less than the 2nd percentile and the lip and philtrum are both thin and flat, does the face predicts FAS. BUT • Too specific and sensitive for FAS • Large false negative rates of FASD

49. FAS/E Support Network of B.C.