Download Midwest Regional Fetal Alcohol Syndrome - NOFAS

FASD Foundation
Competency #1
Midwest Regional Fetal Alcohol
Syndrome Training Center
MRFASTC
Competency 1: Foundation
• This competency addresses knowledge
of the historical, biomedical, and clinical
background of fetal alcohol syndrome
(FAS) and other disorders related to
prenatal exposure to alcohol, known
collectively as fetal alcohol spectrum
disorders (FASDs).
MRFASTC
Learning Goals
• Describe the basic biomedical
foundation of FAS.
• Explain the basic clinical issues
related to FASDs.
• Provide an overview of the
epidemiological and psycho-socialcultural aspects of FASDs.
MRFASTC
Scope of the Issue
• Alcohol use is an entrenched practice
•
•
•
(institution) in the US
More than half of women of childbearing
age drink
12% of pregnant women report
consuming alcohol
Prenatal exposure to alcohol is harmful to
the fetus, particularly to their developing
brain
MRFASTC
Fetal Alcohol Syndrome
Through the Ages
• Alcohol – Arabic ‘al Kuhul’-or monster
• The oldest and most widely used drug
in the world
• 7000 B.C. used for rituals and customs
• Greeks – “Moderation”
• Romans – “Excess”(ive)
MRFASTC
Fetal Alcohol Syndrome
Through the Ages
• “Behold, thou shalt conceive and bear a
son: and now drink no wine or strong
drink.”
- Judges 13:7
• “Foolish, drunken and harebrained
women most often bring forth children
like unto themselves, morose and
languid.”
- Aristotle
MRFASTC
Fetal Alcohol Syndrome
Through the Ages
•
•
•
William Hogarth, 1751
1726 - College of Physicians –
Parental drinking “a cause of
weak, feeble and distempered
children.”
1834 Alcohol Licensure Act –
infants born to alcoholic
mothers sometimes had a
“starved, shriveled, and
imperfect look.”
MRFASTC
Fetal Alcohol Syndrome
Through the Ages
• 1899 – William Sullivan
120 female “drunkards” in prison compared to
sober female relatives
 Perinatal and infant mortality 2 ½ times
greater in offspring of female “drunkards.”
 General perception was that this was due to
germ-cell damage or poor home environment.

MRFASTC
Fetal Alcohol Syndrome
Recognition
• 1968 – Paul Lemoine et al. first described
•
•
effects of prenatal alcohol exposure
1973 –Jones, Smith, Ulleland & Streissguth
publish “Pattern of Malformation in
Offspring of Chronic Alcoholic Mothers.”
(Lancet 1:1267)
1973 – Jones & Smith coin the term FAS
(Lancet 2:999)
MRFASTC
Fetal Alcohol Syndrome
Prevention: 1981
•
•
•
Pregnant women
should not drink
alcohol
Pregnant women
who have already
consumed alcohol
should stop
Women considering
pregnancy should
not drink alcohol
MRFASTC
Fetal Alcohol Syndrome
Prevention and Recognition
• 1989 – Alcoholic Beverage Labeling
Act, warning pregnant women not to
drink
• 1989 – The Broken Cord by Michael
Dorris
• 1993 – Fantastic Antoine Succeeds by
Kleinfeld and Wescott
MRFASTC
Fetal Alcohol Syndrome
Recognition
“Fetal alcohol syndrome
(FAS) now is recognized
as the leading known
cause of mental
disability in the United
States, surpassing spina
bifida and Down’s
syndrome.”- JAMA, 1991
MRFASTC
Fetal Alcohol Syndrome
• 1996 Institute of Medicine Report
Mandated by U.S. Congress
 Scientific review of the literature on effects,
diagnosis, treatment, and prevention
 Concluded that FAS, ARBD and ARND are
completely preventable and represent a
“major public health concern.”

MRFASTC
Effects of Alcohol on Fetus
• Even small amounts of alcohol harmful
•
•
during pregnancy - Pediatrics August, 2001.
Many current obstetric texts suggest and/or
state that mild to moderate alcohol use
during pregnancy is safe!!! - CNN Fall, 2002.
Alcohol use during pregnancy continues to
be an important public health concern MMWR May 22, 2009
MRFASTC
Recent FASD Developments
• 2002, FAS Regional Training Centers formed
• 2004, CDC releases their report on FAS diagnostic
criteria and recommendation on prevention


All children screened for FAS
All women of child-bearing age screened for alcohol use
• 2005, Second Surgeon General’s Advisory on
Alcohol Use and Pregnancy

In addition to pregnant women, women considering or at
risk for pregnancy should abstain from alcohol
MRFASTC
Recent FASD Developments
•
•
•
2009, FASD Competency-based Curriculum
Development Guide released by the CDC
2009, Reducing Alcohol - Exposed Pregnancies
- A Report of the National Task Force on Fetal
Alcohol Syndrome and Fetal Alcohol Effect
2009, Advancing Essential Services and
Research on Fetal Alcohol Spectrum Disorders A Report of the National Task Force on Fetal
Alcohol Syndrome and Fetal Alcohol Effect
MRFASTC
Effects of Alcohol on Fetus
• No known safe amount of alcohol during
•
•
•
pregnancy
No safe type of alcohol
No safe time to drink during pregnancy
Alcohol damages the developing central
nervous system through multiple
mechanisms
MRFASTC
Incidence of FAS
Down syndrome
1/800 births
Cleft lip+/-palate
1/800 births
Spina bifida
1/1000 births
FAS
1-2/1000 births
•Leading known cause of mental disability in U.S.
•Entirely preventable
MRFASTC
Prevalence of FASDs
•
•
•
Prevalence of FAS ranges from 0.2 to 1.5 per
1,000 live births
FASDs estimated at 9-10 per 1,000 live births.
Some groups have been found to have higher
rates of FAS/FASDs:



Disadvantaged groups, some American
Indian/Alaska Native groups, and African
Americans
Children in foster care
Youth in juvenile justice system
MRFASTC
Prevention of AlcoholExposed Pregnancies
• Universal

Warning labels on alcoholic beverages, public
service announcements, mass media campaigns
• Selective

Screening women for alcohol use and providing
brief intervention
• Indicated

Alcohol treatment and measures to prevent
pregnancy
MRFASTC
FAS Screening and
Diagnosis
• Diagnosis based upon history, physical
•
features (facies), growth deficits, and CNS
abnormalities
Many terms used to describe the continuum of
effects resulting from prenatal alcohol
exposure



Fetal alcohol effects
Alcohol-related birth defects
Alcohol-related neurodevelopmental disorder
MRFASTC
FAS Screening and
Diagnosis
• More recent term is fetal alcohol spectrum
disorders or FASDs

Umbrella term describing range of effects
-

Physical
Mental
Behavioral
Learning disabilities
Possible life-long implications
MRFASTC
FAS Screening and
Diagnosis
• Screening is used to identify triggers – if
•
enough triggers are present, next step is
referral to determine diagnosis
Major components of FAS diagnostic criteria:
Facial dysmorphia
 Growth problems
 Central nervous system abnormalities

MRFASTC
FAS Screening and
Diagnosis
• Facial dysmorphia

Smooth philtrum
Thin vermillion border
Small palpebral fissures

Height and/or weight at or below 10th percentile

Corpus callosum, cerebellum, basal ganglia, areas
surrounding the inter-hemispheric fissure


• Growth problems
• Central nervous system impairment
MRFASTC
MRFASTC
MRFASTC
20
MRFASTC
Fetal Alcohol Syndrome
Associated Features
• Limb abnormalities
• Crease differences
• Cardiac
• Small genitalia
• Ocular
• Skeletal
• Auditory
MRFASTC
Growth in FAS
MRFASTC
Growth in FAS - Males
MRFASTC
FAS – Differential
Diagnosis
• Williams syndrome (ELN deletion)
• Velocardiofacial syndrome (del 22q11)
• Noonan syndrome (PTPN deletion)
• DeLange syndrome
• Dubowitz syndrome
• Maternal PKU embryopathy
• Maternal Toluene embryopathy
MRFASTC
Spectrum of Clinical
Symptoms
• Mental disability • Poor compliance
• Learning disability • Poor planning and
impulsivity
• ADD, ADHD
• Poor memory and • Abstraction
recall
difficulties
MRFASTC
IQ at 8 yrs
FAS and the Brain
Normal controls
Prenatal exposure to alcohol
FAS
Full scale
Verbal scale Performance scale
MRFASTC
Costs of FAS
• Cost estimates only available for FAS
•
•
to date
Estimated lifetime cost for one
individual living with FAS in 2002 was
$2 million
Total annual costs associated with
FAS in the United States are
estimated at $4 billion
MRFASTC
Societal Costs of FASDs
• $5.4 billion in lifetime health costs
• $860,000 per child in health costs
• $200,000 per child in lost potential wages
• Estimates do not include other services
 Special
education
 Foster care
 Incarceration
MRFASTC
Collectively, scientific studies
clearly indicate that
NO alcohol during pregnancy
remains the best medical advice!
MRFASTC
FAS – The Road Ahead
FAS
• FAS – Only the tip
•
FASDs
•
of the iceberg
Prompt diagnosis
leads to better
prognosis
Treatment begins
with prevention
MRFASTC