Fetal Alcohol Syndrome Disorders 19th November 2014   Fetal Alcohol Syndrome Disorders 19th November 2014 Follow us on twitter @rcpchscotland and join in the conference conversation at #fasd14

“In pregnancy: No alcohol - no risk” But why? Dr Maggie Watts Director of Public Health NHS Western Isles FASD professionals study event November 2014

Baby Jo Born ?36 weeks Baby under 10th centile for head circumference and weight Congenital heart disease Irritable; failure to habituate Poor sleep pattern Feeding problems Failure to thrive

Toddler Jamie ADD with or without hyperactivity Language delay Developmental delay – fine motor skill impairment Impulsivity Distractible Poor memory Incorrigible Violent behaviours

Schoolgirl Jane Unable to sit still or pay attention Multiple sensory overload Doesn’t have friends Doesn’t learn from mistakes Can’t do complex problem solving (maths) Information processing deficits Can’t sort – numbers, sequencing Verbal learning poor

Schoolboy Jack May have recorded learning disability; IQ < 70 Can’t read social cues Repeats instructions but doesn’t follow them Lies, cheats, steals – in trouble with police School failure Suspended from school on multiple occasions Sexually inappropriate

Young man John Can’t keep time – job interview, attendance at work Sensory overload Socially and sexually inappropriate Attention deficits; memory problems Poor money management; can’t keep tenancy Alcohol and drug problems Mental health problems e.g. depression Suicide

What is the common factor throughout these scenarios? All these children could have organic brain damage caused by prenatal alcohol exposure. Did anyone ask about mum’s drinking in pregnancy at the time? Or at any time since?

The commonest preventable cause of mental retardation FASD is expensive FASD is common FASD is preventable

What is FASD? Continuum of permanent lifelong birth defects caused by maternal consumption of alcohol during pregnancy including, but not only, FAS Describes the full range of disabilities that may result from prenatal alcohol exposure

What is FAS? Most recognisable diagnosis under the FASD umbrella No specific diagnostic tests Triad of clinical manifestations: - facial anomalies - growth retardation - neuro-developmental abnormalities And robust history of prenatal alcohol Low nasal bridge Small head Epicanthic folds Short palpebral fissures Railtrack ears Smooth philtrum Short nose Thin vermilion Micrognathia

Why is FASD an issue? Estimated worldwide prevalence of FAS of 0.5- 2.0 per 1,000 live births With 56,014 live births in Scotland (2013), presents potential of 28-112 babies born in the year affected with FAS Approx 440 –1800 children under the age of 16 And 5 - 9 times more with FASD

Scotland’s drinking is a cause for concern Scotland consumes just under 12 litres of pure alcohol per adult annually Self-reported use of alcohol accounts for 55% of total sales More than 2 in 5 women aged 16-44 years self report drinking above recommended limits Scottish Health Survey 2011

What is a unit of alcohol? 750 ml Bottle of wine (13%) = 9.8 units Standard measure of wine (125ml) =1.2 units 70cl bottle spirits (40%) = 28 units Standard measure (35ml) = 1.4 units 2l cider (5%) = 10 units 750 ml Buckfast (15%) = 11.3 units Recommended maximum intake: 3-4 units daily for men and 2-3 units for women with two days a week alcohol-free (ie 21 units for men and 14 units for women weekly) Pictures: Wikepedia

Drinking in pregnancy Chief Medical Officer for Scotland advice – AVOID ALCOHOL WHEN PREGNANT OR CONTEMPLATING PREGNANCY. In national surveys, 25-50% of women report consuming some alcohol during pregnancy In practice, up to 60% of women report drinking alcohol in the three months before attending for antenatal booking appointment Growing up in Scotland research and Infant feeding survey 2005

Alcohol affects development http://www.people.virginia.edu/~rjh9u/hdevsum.html

Risk factors Dose of alcohol Pattern of exposure - binge vs chronic Developmental timing of exposure Genetic variation Maternal characteristics Synergistic reactions with other drugs Interaction with nutritional variables No alcohol, no risk

How common is FASD in Scotland? In the UK…. We don’t actually know as we don’t have national systems to collect and record information about fetal alcohol harm Scottish paediatric passive surveillance programme for FAS in children under 6 years of age Experience from around the world – if you look for FASD, you will find plenty

Diagnosis is necessary Diagnosis is possible Diagnosis is meaningful

Diagnosis is possible REQUIRES A MULTIDISCIPLINARY TEAM We can do it – we have screening tools, coding and assessments as well as training. Environment and Health – Paediatrics Temperament and Mood – CAMHS Cognitive processing Clinical Psychology Educational Psychology Neuropsychology Speech and Language Pathology Occupational Therapy Education

Diagnosis is necessary for prevention and to reduce secondary disabilities Diagnosis before age 6 Diagnosis of FAS not “FAE”: recognisable vs. invisible disability Stable, nurturing home, 72% of life Staying in each living situation for at least 3 years Experiencing a good quality home Eligible for Special Needs/Disability services No experience of violence against self Having basic needs met for at least 13% of one’s life Streissguth et al,1996

Diagnosis is meaningful Availability of expert advice Skills training Particular concerns: Fostering and adoption Childcare services Education and social work

Developmental stages of 18 year old child with FASD How does a child affected by fetal alcohol differ from others? Physical differences size, congenital problems Behaviours, especially when relating to others aggression mood swings emotional lability attention difficulty Executive Function ability to plan complex problem solving planning judgement arithmetical tasks working memory Intelligence normal or low IQ Communication and speech speaking too fast/too much interrupting Motor dysfunction Deficient social interactions lack of awareness Unusual physiological responses sleep disturbances Hyperactivity Deficits in verbal learning Sensory impairment – vision and hearing problems Modified by Alberta Health Services 2013 from Jodee Kulp

What about mum? May: be single parent have other children be drinking; may have drunk throughout pregnancies be struggling financially, mentally and socially be unable to cope – child(ren) taken into care be unable to cope with care system and loss have fetal alcohol spectrum disorder herself be dead – through suicide or alcohol and drugs

Training - FASD e-learning resource http://www. knowledge. scot. nhs Training - FASD e-learning resource http://www.knowledge.scot.nhs.uk/home/ learning-and-cpd/learning-spaces/fasd.aspx

Useful links www.fasaware.co.uk www.nofas-uk.org www.fasdscotland.com www.eurobmsn.org Thanks to my mentors and to the adults and children with FASD who matter so much.

Fetal Alcohol Syndrome Disorders 19th November 2014   Fetal Alcohol Syndrome Disorders 19th November 2014 Follow us on twitter @rcpchscotland and join in the conference conversation at #fasd14