Fetal Alcohol Syndrome Disorders 19th November 2014

 Follow us on twitter @rcpchscotland and join in the

conference conversation at #fasd14

Dr Maggie WattsDirector of Public Health

NHS Western Isles

FASD professionals study eventNovember 2014

“In pregnancy:No alcohol - no risk”

But why?

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

Baby Jo

ADD with or without hyperactivity Language delay Developmental delay – fine motor skill

impairment Impulsivity Distractible Poor memory Incorrigible Violent behaviours

Toddler Jamie

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

Schoolgirl Jane

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

Schoolboy Jack

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

Young man John

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?

What is the common factor throughout these scenarios?

FASD is commonFASD is expensive

FASD is preventable

The commonest preventable cause of mental retardation

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 FASD?

Small head

Short palpebral fissures

Epicanthic folds

Smooth philtrum

Thin vermilion

Micrognathia

Low nasal bridge

Short nose

What is FAS?Most recognisable diagnosis under the FASD umbrella

No specific diagnostic testsTriad of clinical manifestations: - facial anomalies - growth retardation - neuro-developmental abnormalities

And robust history of prenatal alcohol

Railtrack ears

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

Why is FASD an issue?

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

Scotland’s drinking is a cause for concern

Scottish Health Survey 2011

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)

What is a unit of alcohol?

Pictures: Wikepedia

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

Drinking in pregnancy

Alcohol affects development

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

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

Risk factors

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

How common is FASD in Scotland?

Diagnosis ispossible

Diagnosis is necessary

Diagnosis is meaningful

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 possible

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

Diagnosis is necessaryfor prevention and to reduce secondary disabilities

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

Modified by Alberta Health Services 2013 from Jodee Kulp

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

What about mum?

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

 Follow us on twitter @rcpchscotland and join in the

conference conversation at #fasd14