Addressing
the impact of
prenatal alcohol
consumption.
Evike Goudreault
Coordinator of Special Needs Services
CBHSSJB
Montreal, Qc
January 15-17, 2013
OBJECTIVES
To understand the TERMINOLOGY and
CHARACTERISTICS of FASD;
To understand the factors related to the
IDENTIFICATION and DIAGNOSIS of FASD;
To begin to understand HOW FASD IMPACTS
THE CREE NATION and what we can do.
FACTS AND
STATS
The impact of prenatal
alcohol consumption
over a lifespan.
Alcohol
A colourless, volatile flammable liquid. It is used
as a solvent, in drugs and cleaning products,
explosives and intoxicating beverages.
Alcohol is a “teratogen” – a substance
that causes permanent birth defects.
Alcohol
Thiladomide
vs
Both are teratogenes but
alcohol causes invisible disabilities.
Ethanol
crosses the
placenta
FREELY
Pathway of alcohol through
the mother to the fetus.
Alcohol enters body
through the mouth and into
the stomach…
…is absorbed through the
intestine and enters the
mother’s bloodstream…
…then passes through the
placenta and is carried
through the umbilical cord
to fetus.
It finally enters the blood
circulation of the fetus.
“Alcohol produces serious effects in the
brain of the developing child. These effects
from alcohol are more serious than effects
from heroin, cocaine and marijuana.”
- American Institute of Medicine
“FASD is considered to be the leading cause
of development disabilities and mental
retardation world-wide.”
- Journal of FAS International 2004; Roberts and Nanson 2000
Fetal
Alcohol
Spectrum
Disorders
Prenatal Alcohol Exposure
Apparently
normal child
FASD
Death
pFAS
ARBD
(Partial FAS)
(Alcohol-related
birth defects)
ARND
(Alcohol-related
neurodevelopmental
disorders)
FAS
ARND
Alcohol-Related
Neurodevelopmental Disorder
Confirmed maternal alcohol exposure;
Evidence of impairment in 3 or more of the following
central nervous system domains:
Memory
Social skills
Abstract reasoning
Attention deficit
Hyperactivity
Adaptive behavior
Brain structure
Cognition IQ < 70
Academic achievement
Communication
Executive functioning
Hard and soft
neurologic signs
The sole cause of FASD is
FASD is NOT caused by
Women drinking alcoholic
beverages during pregnancy.
Consumption of alcohol
prior to pregnancy;
Alcohol use after child is born;
Paternal intake of alcohol.
For the guys:
Biological fathers cannot cause FASD
But studies show that women who are with
partners who drink are more likely to drink
during their pregnancy.
Future father’s role:
Support the woman’s choice not to drink
during her pregnancy.
FACTORS THAT DETERMINE
THE LEVEL OF DAMAGE
THE DOSE
OF ALCOHOL
IS IMPORTANT
NO amount is absolutely dangerous.
NO amount is absolutely safe.
MOST dangerous pattern seems to be
high dose binges once or twice a week.
What constitutes a drink?
Each of these contains about the same amount of alcohol
(.48 oz. pure alcohol)
Beer can
Wine glass
Shot glass
12 oz. x 4%
4 oz. x 12%
1.2 oz. x 40%
Timing is an important factor
The first 10 days, prior to implantation,
are low risk
Between week 2 and week 12 is very high risk
for major malformations including brain damage
The last 6 months are high risk for continuing
impacts on brain and on growth
Critical periods in human development
Week 3
Week 4
Week 5
Week 6
Week 8
Week 16
Week 38
Central nervous system
Heart
Upper limbs
Eyes
Lower limbs
Teeth
Palate
Extended genitalia
Ears
= Major congenital anomalies
= Functional defects & minor congenital anomalies
During the 1st semester, alcohol may:
Cause serious damage to the developing brain;
Disrupt normal cell migration;
Affect vital organs (heart, liver and kidneys);
Cause facial malformations;
Provoke miscarriage.
During the 2nd semester, alcohol may:
Affect the development of the brain;
Provoke miscarriage that may put the mother’s
life in danger;
Damage muscles, skin, teeth, glands and bones;
During the 3nd semester, alcohol may:
Interrupt the development of the brain and lungs;
Prevent normal weight gain;
Provoke a premature birth.
Factors that determine
the level of damage
Amount of alcohol consumed
Pattern of consumption (daily vs binging)
Frequency of use
Timing of exposure during fetal development
Fetal and maternal genetic factors
General living conditions during pregnancy
Mother’s tolerance for alcohol; her size, age and weight
Understanding alcohol consumption
during pregnancy
Alcohol is a commonly used, legal
and available substance not
generally thought of as a powerful
drug capable of causing harm to an
unborn child.
High numbers of
pregnancies are
unplanned (50-70%
according to research)
Mothers may be
unaware of their
pregnancies in the early
weeks
Women who consume a
lot of alcohol often have
irregular menstrual cycles
and may not recognize the
signs of pregnancy, such
as nausea, as being
related to their pregnancy.
Male partners or friends may
contribute to a pregnant
mother’s drinking because
they do not want to lose their
drinking partner.
Partner abuse = stress and
may increase drinking.
Fetal Alcohol Syndrome was first
identified as a medical condition in 1973.
“Behold, thou shalt conceive and bear a son:
and now drink no wine or strong drinks.”
- Judges 13:7
1500 in Europe
Francis Bacon warned against using alcoholic beverages
during pregnancy
1500 in Canada
Before Europeans came to North America, Canada was
totally bone dry and its inhabitants were abstinent.
Historical references to alcohol
consumption in Canada
Early 1800s
Alcohol is introduced in
the Native economy by
Northwest Company.
World Health Organization (WHO)
FASD is now acknowledged by the World Health
Organization as the leading recognized cause of
intellectual disability in the Western World.
STATS
Canadian stats on birth defects
4500
4000
3500
2000
1500
1000
500
0
FASD
HIV
Infection
Spina
Bifida
Down
Syndrome
Prevalence
The percentage of the population having specific
disorder at a specific moment in time.
Population of Canada 33,200,000
IF the prevalence of FASD = 1/100*
THEN the prevalence of FASD = 332,000
*CDC “guestimate” for the United States
Webinar Clarren & Loock 2011
Incidence
The number of new cases of a disorder that will
occur over a specific period of time. (i.e. newborns)
Births in Canada (2008) 364,300
IF the incidence of FASD = .9/100*
THEN the incidence of FASD = 3,279
*CDC “guestimate” for the United States
Webinar Clarren & Loock 2011
Incidence/Prevalence
rates in Canada
Considerations
Low incidence and prevalence rates could mean:
Prevention is working or there is
low identification of the disease
Prevalence & Incidence of
FASD
in various
populations
Full FAS: 0.33 – 2 per 1000 [~1:500]
Full FAS (In-school): 2 – 7 per 1000* [0.7%]
Full FAS (Foster care): 10 – 15 per 1000** [1.5%]
FASD: 9 per 1000 [1%]
FASD (In-school): 20 – 50 per 1000 [5%]
FASD (BC)*: 190 per 1000*** [19%]
Every hour, two children are born brain damaged due to
alcohol consumption during pregnancy
*May, 2009; **Astley, 2009; ***Robinson, 1986
CAPHC FASD Update 2010
Provincial statistics
Manitoba study, (Fuchs, Burnside, Marchenski,
& Mudry, 2005) found 17% of children in foster
care were affected by FASD.
In an Ontario study involving 28,000 students, 21.4%
are receiving Special Education Services, most of
them because of prenatal exposure to alcohol.
Cree Nation
900
80%
720
individuals (aged 0-29) identified as
having special needs
mothers confirmed alcohol consumption at
some point during pregnancy
Individuals identified as having special needs,
possibly exposed to alcohol during pregnancy
Under-diagnosed
FASD is under-recognized and often goes
undiagnosed; it is difficult to be certain how
many individuals have FASD
720
exposed
3
diagnosed
FASD comes with
lifelong costly disabilities
$1.8 million
for one particular person with FAS
Annual direct cost of FASD in Canada
6.2 billion CA$ every year
13%
Others
24%
Education
14%
Correctional services
19%
Social services
30%
Healthcare
Fetal Alcohol Syndrome
In screening for FAS, a doctor looks at:
Prenatal maternal alcohol use;
Growth and development disabilities;
Specific physical characteristics;
Damage to the brain and
central nervous system
Children with
FAS are
small and
underweight
Photo: courtesy of Dr. Denis Lamblin
Can we screen for growth?
Most children who are absolutely
growth deficient do not have FASD
Most children with FASD have no individual
evidence of growth deficiency
Facial characteristics in
FAS in the young child
Discriminating features
Microcephaly
Short palpebral
fissure
Associated features
Epicanthal folds
Low nasal bridge
Minor ear anomalies
Indistinct philtrum
Thin upper lip
Micrognathia
Project Cork Institute 1994
Dysmorphic features
Indistinct philtrum
Thin upper lip
Palpebral fissure length
Palpebral Fissure Length
endocanthion to exocanthion
Source: Astley, S.J. 2004. Diagnostic Guide for Fetal Alcohol Spectrum Disorders:
The 4-Digit Diagnostic Code, Third Edition. Seattle: University of Washington
Publication Services, p. 114.
Lip-Philtrum Guide I
Lip-Philtrum Guide 2
Can we screen for facial features?
When and only when the eye slits are less than the
2nd percentile and the lip and philtrum are both thin
and flat, does the face predicts FAS.
BUT
Too specific and sensitive for FAS
Large false negative rates of FASD
FAS/E Support Network of B.C.
Development imbalance
11
Daily living skills
7
Competency
Social skills
Reading ability
16
18
Physical maturity
6
Emotional maturity
Concepts of time and money
Understanding ideas
8
6
20
Expressive language skills
0
2
4
6
8
10
12
14
16
18
20
Actual chronological age of individual: 18
Adapted from Diane Malbin (1994)
Manifestation of CNS dysfunction
associated with FASD
Microcephaly
Altered muscle tone
Poor fine & gross motor coordination
Hyperactivity in childhood
Attention/memory problems
Learning disabilities
Language & speech problems
The brain is the first and
last organ to be impacted.
The brain is the only organ system
developing throughout pregnancy and is
therefore the only organ affected by alcohol
exposure at any point in the pregnancy
Can we screen for brain damage?
We can look for mysterious maladaptation
We can look for problems with executive functioning
We can look for intellectual handicap
BUT
There is no pattern that will be specific for FASD
Large false positive rates of FASD
Other features that may
be seen in FASD
Chest infections
Allergies/Asthma
Cleft lip/Palate
High pain tolerance
Eye anomalies
Ear and hearing problems
Dental malformations
Genital anomalies
Cardiac defects
Primary effects
Secondary effects
Physical birth defects
Mental health problems (94%)
Communication issues
Trouble with the law (61%)
Learning disabilities
Employment issues (80%)
Memory problems
Drug and alcohol problem (30%)
Short attention span
Dependent living (80%)
Difficulty understanding causeand-effect relationships
Disruptive school exp (60%)
Sensory integration issues
Victim of physical, sexual
and/or emotional abuse (72%)
Low self-esteem
What becomes of adolescents &
young adults with FASD
Frustration, low self-esteem and depression;
Drug addiction and alcoholism;
Inappropriate sexual behavior;
Unemployment and poverty;
Early and frequent involvement with justice;
Unplanned pregnancies;
Susceptibility to suicide;
“The girls get knocked up and the boys get locked up.”
Protective factors
Stable and safe environment
Early diagnosis
Before 6 years of age
Early interventions
Benefits of screening
& diagnosing
Access to programs and support services;
Access to appropriate interventions;
Diagnosis of brain dysfunction due to brain
damage is therapeutic in itself;
Shifts collective interpretation of the individual’s
problems from “he won’t” to “he can’t”.
Because they look
normal
we tend to forget
they have
PERMANENT
BRAIN
DAMAGE
FASD changes our way of thinking
“They are bad and mean.”
“They are frustrated,
defensive, challenged and
abused.”
“They are immature.”
“They are younger,
developmentally delayed.”
“They repeat the same
mistakes. They do it on
purpose.”
“They have problems with
cause-and-effect and
generalizing. They don’t
see similarities and don’t
think before they act.”
FASD
is a diagnosis
for both
mother and the child
In La Réunion Island
1995-2012
Health plan to prioritize FASD prevention campaign
(TV, Radio, Press, information, private doctors, etc.)
September 18th, 2001
Creation of REUNISAF network with a “core network”
to support families and professionals
End of the family curse
We can try to modify family fate.
Partial FAS
FAS
REUNISAF
Network
Normal
Results 2002 - 2006
The rewards of REUNISAF’s core network
In 5 years
50% of mothers abstained from drinking alcohol
Among those using alcohol, 52% are using effective
contraceptives.
Many non-alcohol exposed children are born to mothers
who previously gave birth to children affected.
How can FASD be prevented?
Awareness
(primary)
At-risk
Affected
(secondary)
(tertiary)
What’s next?
Support local teams working on preventive measures;
Report history of prenatal alcohol
consumption in mother’s and child file;
Follow child up to 10 years old for learning difficulties;
Support development of multi-disciplinary diagnostic clinic.
Establish a referral process.
Coordinate diagnostic process of identified children;
Continue the work that is going in the childcare/schools, working
towards intervention for children with FASD and special needs;
Find ways to better support families.
Enhance collaboration with schools/childcare centers/clinics.
Consequences of not taking action
Increases
Decreases
Drug and alcohol addictions
Intellectual capacity
Crime rate
Graduation rate
Mental health and
suicide rate
Parental capacity
Unemployment rate
Capacity to care for elders
Teen pregnancy
Overall health
Unplanned pregnancies
Leadership capacity
FASD