Fetal Alcohol Spectrum Disorder – an overview

1. Fetal Alcohol Spectrum Disorder – an overview Dr Kate Robertshaw Consultant Neurodevelopmental Paediatrician 28th Aug 2013 Heretaunga Kindergarten Association

2. What is FASD ? • Who is at risk of FASD? • What sort of problems does FASD result in? • How much do you need to drink? • What does it mean for Hawke’s Bay ?

3. FASD is an umbrella term for range of effects on individual whose mother drank alcohol during pregnancy

5. Fetal Alcohol Syndrome: a recognisable pattern • FAS is the readily recognisable form of FASD • Facial dysmorphology • Growth retardation • Brain dysfunction e.g.Intellectual Disability

6. Significant brain development in first 8 weeks

7. Facial development(Lipinski et al)High-resolution magnetic resonance imaging (MRI) of fetal mice illustrates exposure-stage-dependent brain and facial dysmorphologyresulting from acute ethanol insult on gestational day (GD) 7 versus 8.5

8. High resolution MRI of fetal mice readily illustrates the broadly ranging degree of insult that can result from alcohol exposure at specific stages of embryogenesis.  (O'Leary-Moore, et al, 2011).

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10. Fetal Alcohol Spectrum Disorder (FASD) • Diagnostic categories within this • Fetal Alcohol Syndrome (FAS) • Partial Fetal Alcohol syndrome (PFAS) • Alcohol Related Neurodevelopmental Disorder (ARND) • Alcohol Related Birth Defects (ARBD) • Stratton et al 1996. Fetal Alcohol Syndrome: Diagnosis, epidemiology, prevention and treatment. Washington DC: Institute of Medicine Division of Biobehavioural Sciences and Mental Disorders, National Academy Press

11. What’s the difference between FAS, PFAS and ARND?

13. What’s the same about FAS, PFAS and ARND? • BRAIN DYSFUNCTION IS TO THE SAMEDEGREE ACROSS ALL 3 DIAGNOSES • The only difference is that • FAS- facial features and small • PFAS- small eyes and either flat philtrum or thin upper lip and not necessarily small • ARND- no facial features and not small

14. Neocortex- Thought (including planning, language, logic & will, awareness), most developed in humans. • Limbic System - Emotion (feelings,relationship/nurturing, images and dreams, play), shared by mammals. • Reptilian Brain - Instinct (survival,breathing/swallowing/heartbeat, startle response), entire brain in reptiles.

18. Problems with: Cognitive functioning (IQ) Academic achievement Attention Memory Language & communication Adaptive behaviour Motor skills Sensory processing Executive functioning Diagnoses of: Intellectual disability Specific learning difficulties (dyslexia) ADHD/ADD Language disorders Dyspraxia Sensory processing and regulation difficulties What is brain dysfunction?

19. What makes FASD so challenging? • Minimum of 3 separate areas of impairment • Impairment severe (worse than 97 out of 100 peers) • Confusing picture of abilities and disabilities • Executive functioning, memory and language problems are often missed

20. Difficulties you might recognise Impulse Control • Poor planning ability • Often become impulsive once tasks are more complex Abstract Thinking • Lack of cause-and-effect reasoning • Difficulties categorizing and sequencing e.g. time, money • ‘Ownership’ is an abstract concept, as is ‘borrowing’ Perseveration • difficulties with initiating, stopping or switching direction of behaviour • ‘over-focused’ cannot ‘shift gears’ or ‘exit’ • it may be because the next step is too difficult - present an easier task - help to get ‘unstuck’

21. Memory problems • Cannot necessarily connect between experiences of today to tomorrow • May be ‘confabulating’ to fill in the gaps (not remember if real or imagined) • Impaired memory means the young person has trouble learning from both positive and negative experiences. (learning from consequences may not work) • Cannot generalise from past experience to new situation

22. Who is at risk of FASD? • Anyone who drank alcohol at any time in pregnancy • NZ drinking culture affects all social groups • Unintended pregnancy is common: • 82% of pregnancies in 15-19yr olds • 29% of pregnancies in 35-39 yr olds • Effects of alcohol of the woman and therefore the fetus vary between women- liver enzymes, alcoholism, body size • 2 binge drinks (4 units in 2hours) in the first 8 weeks is enough

23. How do we know how much we are drinking?

24. Prevalence of FASD • International prevalence ~1% (Sampson et al 1997) → expect 600 babies per year in New Zealand • Up to 5% in Western civilisations (May et al, 2009; Petkovic & Barisic, 2009) • Taranaki study- • 80% women consumed alcohol prior to becoming pregnant; • 66% binge drank before pregnancy recognition; • 28% continued to use alcohol once they knew they were pregnant (Ho & Jacquemard,2009) • Social drinkers are at risk (Salmon, 2007)

25. How big is the problem? • Depends on how & when you collect your data • Surveillance studies (n=15) (birth certificates, registries & capture studies) • 0.9 / 1000 children FAS • 0 / 1000 children FASD • Clinic based studies (n>50) (antenatal alcohol screens and diagnosis of newborns) • 1.8 / 1000 children FAS • 6.2 / 1000 children FAS • Active case ascertainment methods (n=8) (special referral clinics excluding in school clinics here) • 15.6 / 1000 children FAS • 38.2 / 1000 children FASD

26. Hawke’s Bay Picture? • Based on child population of 45,000 • Predict • 135 FAS • 405 FASD • Where are they all?

27. Why diagnose and intervene in early childhood? • Prevent further FASD births through maternal education • Protect child from secondary disability • 94% have at least 1 co-morbid psychiatric diagnosis by adulthood • 54% depression • 33% panic attacks • 29% psychosis • 40% ADHD (Connor et al 2009) • Making the diagnosis clarifies the numbers and drives service provision (Canadian experience) • Youth Justice involvement (is politically motivating) • 80% of adults with FASD are not able to live independently (Streissguth, et Al, 2004)

28. Other risk factors for the unborn child • Women using alcohol are at a higher risk of other substances as well: • Tobacco • Cannabis • Methamphetamine / P • Heroin or methadone • Lifestyle chaos increases disability • Which is worse for the baby?

29. The whole picture

30. No problem can withstand theassault of sustained thinking

31. Thankyou for inviting me Any questions?