Dr. Rebecca Ewing, OB/GYN
Joyce Jorgenson, NOFAS NH
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Define Fetal Alcohol Spectrum Disorders
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Recognize physical, neuro-developmental and
functional outcomes associated with prenatal
alcohol exposure
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Discuss recent research interventions for
children with FASDs
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Address intervention approaches to
prevent or lesson fetal alcohol exposure
Fetal Alcohol Spectrum Disorders is an umbrella term
describing the range of effects that can occur in an
individual whose mother drank during pregnancy.
These effects may include physical, mental, behavioral,
and /or learning disabilities with possible lifelong
implications. The term FASD is not intended for use as
a clinical diagnosis.
CDC July 2004
Estimated Prevalence
Data….2011
8-31 Babies born with FAS
23-92 Babies born with FASD
Public Health Block Grant Application 2011
Estimated Cost Data
Lifetime Cost of Care
per Individual
NIAAA
2 million
SAMHSA 3 million
adaptation…Disabilities Research Reviews

FAS (Fetal Alcohol Syndrome)
PFAS (Partial FAS)
 FAE (Fetal Alcohol
Effects)
 ARND (Alcohol Related
Neuro-developmental
Disorders)
 ARBD (Alcohol Related
Birth Defects)


Growth Restriction:
Babies are born smaller than anticipated for the
gestational age at birth, and usually remain so throughout
life.

Central Nervous System:
Any or all of the following conditions may be
present– intellectual disabilities, developmental delays,
short attention span, impulsivity, perceptual problems,
hyperactivity, poor coordination & learning disabilities.

Facial Anomalies:
Babies have the following distinctive facial features-small widely spaced eyes; a short, upturned nose; a smooth
philtrum (no notch between the nose and lips); abnormally
thin upper lip; and small flat cheeks.
(CDC, 2005)
( Reprinted with permission, Streissguth A.P., & Little, R.E. 1994)

First trimester
 Cell damage
 Brain damage
 Substantial structural changes

Second trimester
 Poor nutrition can retard the growth of tissue and organs
 Risk of miscarriage

Third trimester
 Lower birth weight/overall amount of growth
 Increase likelihood of early labor and delivery
 Intellectual Disability
( March of Dimes, 2000)

Alcohol passes freely from the
mother to the fetus

The fetal liver cannot metabolize
alcohol efficiently

Blood alcohol levels are
equivalent between the woman
and fetus by 1 hr.
(Cohen-Kareem, 2002)

Alcohol levels in amniotic fluid
are lower but persist for longer
(Burd, L. 2007)
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The best predictor of adolescent alcohol abuse is
prior fetal exposure or mothers who drank alcohol
during pregnancy,”
“Animals learn to like the smell of what their
mothers eat during pregnancy.
It could be alcohol odor, or it
could be the odor of apple. Dr. Youngentob.
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No consequences
Cravings for alcohol as an adolescent and adult
FASD – Neurobehavioral Development
Abnormalities
FAS – Structural and Functional Abnormalities
Genetic changes – impact on future generations
Demise
Brain of baby with
no alcohol exposure
Brain of baby with
heavy alcohol exposure
Photo courtesy of Sterling Clarren, MD
“Of all the substances of abuse
(including cocaine, heroin
and marijuana),
alcohol produces by far the most
serious neurobehavioral
effects in the fetus.”
Institute of Medicine, 1996
Cognition/Intellectual Functioning
Activity and Attention


Hyperactivity
Focusing, encoding, shifting
Learning and Memory




Auditory, spatial, design, and narrative memory
Working memory
Intrusion, perseveration, false-positive errors
Comprehension, math reasoning
Last serny, Fingledobe and Pribin
were in the nerd-link trepping
gloopy caples and cleaming
burly greps.
Suddenly, a ditty strezzle boofed
into Fingledobe’s tresk. Pribin
glaped and glaped. “Oh,
Fingledobe!” He chifed. “That
ditty strezzle is tuning in your
grep!”
Other Neuropsychological Abilities/Executive
Functioning
 Behavioral and emotional regulation-impulsivity,
lability
 Planning/organization
Sensorimotor Integration
Social Skills and Adaptive behavior
Mental Health Issues
Streissguth, et al., 1996

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Asperger’s Disorder
Attention Deficit
Hyperactivity Disorder
(ADHD)
Autistic Disorder
Borderline Personality
Disorder
Conduct Disorder
Anxiety
Reactive Attachment
Disorder






Depression
Learning Disability
Oppositional-Defiant
Disorder
Post Traumatic Stress
Disorder (PTSD)
Receptive-Expressive
Language Disorder
Eating Disorders
Language
 Social communication
 Word comprehension, naming ability, articulation
 Expressive and receptive language skills
Motor Abilities
 Fine and gross motor dysfunction
 Delayed motor development
 Speed/precision, grip strength
Processing Abilities


Spatial memory, processing of visual and auditory
information
Difficulties in motor control and functioning
Pink
Black
Red
Black
Yellow
Blue
Blue
Red
Red
Yellow
Black
Yellow
Red
Green
Black
Black
Yellow
Yellow
Orange
Orange
Orange
Quickly read the words
Pink
Black
Red
Black
Yellow
Blue
Blue
Red
Red
Yellow
Black
Yellow
Red
Green
Black
Black
Yellow
Yellow
Orange
Orange
Orange
Quickly state the colors

Many individuals with FASD are:

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Caring, kind, loyal, nurturing and
compassionate
Trusting, loving, determined, committed and
persistent
Curious, involved, fair and cooperative
Energetic, hard working and athletic
Artistic, musical and creatively intelligent
Early diagnosis
Stable and nurturing home environment
Early intervention services
No violence/victimization
DDD services
Streissguth,2004
Poor sleep-wake cycles/irritability
Failure to thrive (poor weight gain)
Chronic ear infections
Difficulty nursing
Difficulty bonding with caregiver
Developmental Delays
Speech delays; low muscle tone
Delay in potty training
Speech delays or difficulties
Continued motor skill delays
Easily distracted
Colds, infections, other illness
Eating (small appetites or sensitivity to food texture)
Fidgeting (meal time or other structured event)
Sleep problems
Delayed speech development
Altered motor skills
Attention deficits
Learning deficits
Caregiver concerns
Bedtime problems
Making and keeping friends
Difficulties determining body language and
expressions
Boundary issues
Attention problems and impulsivity
Easily frustrated/tantrums
Difficulty understanding cause and effect
Still need limits and protection due to deficits in reasoning,
judgment and memory
High risk of being drawn into antisocial behavior, eg.
stealing, lying, drugs: ”thrill seekers”
Unable to distinguish between friends/enemies; impaired
judgment for decisions
Struggle to accept their own disability while trying to prove
ability to be independent
Often obsessed by primal impulses such as sex and firesetting
Lacks remorse
Negligent of normal hygiene
Extremely vulnerable to suggestions in movies, TV
High risk for school dropout
Unable/unwilling to take responsibility for actions
Moral chameleons
Often exhausted and irritable due to poor sleep patterns
Vulnerable to anti-social behavior. The criminal justice
system provides structure and supervision they
experienced in school or in their home
Unable to follow safety rules: fire hazards, vehicles, basic
life needs
May lack ability to manage money
Incapable of taking daily medications
Vulnerable to panic, depression, suicide, psychosis
May need sheltered environment
Professionals, family members, and caretakers need to
reconceptualize how we view the behavior of a individual with
FAS/FASD
From seeing:

To understanding:
 Won’t
 Lazy
 Lies
 Doesn’t try
 Doesn’t care
 Refuses to sit still
 Fussy, demanding
 Resisting
Can’t
Tries hard
Fills in
Exhausted or can’t start
Can’t show feelings
Over stimulated
Oversensitive
Doesn’t “get it”
One prevention model contains seven basic components, form the
acronym SCREAMS
 Structure: a regular routine with simple rules and concrete,
one step instruction, paired with examples
 Cues: verbal, visual, or symbolic reminders can counter the
memory deficits
 Role models: family, friends, TV shows, movies that show
healthy behavior and life styles
 Environment: minimized chaos, low sensory stimulation,
modified to meet individual needs.
 Attitude: understanding that behavior problems are primarily
due to brain dysfunction
 Medications: most often the right combination of meds can
increase control over behavior
 Supervision: 24/7 monitoring may be needed for life due to
poor judgment, impulse control.
CDC provided funding to develop, implement, and
evaluate interventions appropriate for children with
fetal alcohol spectrum disorders (FASDs) and their
families.
Each intervention was designed to improve the
developmental outcomes of individuals with
FASDs, reduce secondary conditions, and improve the
lives of families affected by FASDs.
“Stretched Toddler”.

Think:

Remember:
“Individuals with FASD
will always need an
external brain.”

Acknowledge:
Interventions must be
useful to, and usable by
the individual in order to
be an intervention.

Foster:
Inter-dependence.

Reflect:
Respect.

Promote:
Self-worth.
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Concentrate on their strengths and talents
Teach memory strategies for daily living skills
Accept individual’s limitation
Be consistent with everything (discipline, school,
behaviors)
Use positive reinforcement often (praise, incentives)
REPEAT, REPEAT
Honor their feelings

Team approach
 Multi-discipline assessment
 Psychosocial history
 Physician
 Disciplines (Mental health, speech, OT/PT, LD)
 Parents/caregivers
 Social service agencies (DDD, SS, Child protective, drug treatment
centers)
 Case management
 Diagnosis
 Early intervention and tracking
 Stable home environment
 Medication
 Case manager/mentor in school/home/communities
 Support services-family community, educational, vocational
 Supervised housing/residential facility
 Special education and vocational rehabilitation
Drinking alcohol during pregnancy is the leading
preventable cause of birth defects and developmental
disabilities in children, says the Centers for Disease
Control and Prevention. But……
That's not stopping pregnant
women from drinking.
RYAN JASLOW / CBS NEWS/ July 19, 2012, 5:24 PM1 in 13 pregnant women drink alcohol,
Institute of Medicine, 1996
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Women Age 18 -44 who were not pregnant
and do not have children living in the
household – 63%
Women in first trimester of pregnancy – 19.0%
Women in second trimester of pregnancy –
7.8%
Women in third trimester of pregnancy – 6.2%
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….no known safe amount of alcohol to drink while pregnant.
There is also no safe time during pregnancy to drink and no
safe kind of alcohol. CDC urges pregnant women not to
drink alcohol any time during pregnancy. CDC
There is no known amount of alcohol that is safe to drink
while pregnant. There is also no safe time to drink during
pregnancy and no safe kind of alcohol to drink while
pregnant. SAMHSA
No safe level of alcohol consumption during pregnancy has
been identified, and no period during pregnancy appears to
be safe for alcohol consumption. ACOG TOOLKIT
INTERVENTION POINT: PRE-PREGNANCY
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Policies and practices that address the substance‐
exposed infant (SEI) problem
Health warnings;
Provision of educational materials;
Public education and awareness
media campaigns.
INTERVENTION POINT:
PRENATAL PERIOD AND BIRTH
It proceeds through the prenatal period and birth,
when the interventions include
screening of pregnant women for
substance use
testing of infants for substance exposure.
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Screening
Identification of risk
Brief intervention
Referral to treatment
Treatment provided to identified patient
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Robust prevalence study
Universal survey screening
A dedicated FAS/FASD diagnostic and
treatment center
A clear message to the public