Fetal Alcohol Syndrome

Department of Human Services, Public Health Division, Office of Family Health, Women’s and Reproductive Health, FAS

Prevention Program

What Is Fetal Alcohol Syndrome?

The Leading Preventable Cause of Mental

Retardation

Fetal Alcohol Spectrum Disorders

FAS --the most severe diagnosis on the spectrum of alcohol related

disorders

FASD --Fetal Alcohol Spectrum DisorderARBD (alcohol related birth defects)ARND (alcohol related neuro-

developmental disorder)FAE (fetal alcohol effects)FAS (fetal alcohol syndrome)

FAS is 100% preventable if a woman does not drink

alcohol while she is pregnant.

FAS Facts

• First described 1968-72• Dose-response effect---the more alcohol the higher the likelihood of FAS• No known safe level of alcohol use during pregnancy •Greatest contributor to preventable mental retardation

FAS Facts

Alcohol diffuses through placenta Concentration in fetal blood is the

same as in the mother’s blood within a few minutes

The fetus is able to metabolize alcohol 10% as fast as the mother

Over half of all pregnancies in the United States

are unplanned.

Most women who drink

alcohol will continue to drink

until their pregnancy is

confirmed--four to eight weeks

after conception. (CD Summary Sept 2007)

When Pregnancy Is Unknown

What if a woman drinks before she knows she’s pregnant?– Embryonic Stage: 3rd post conception week

of pregnancy is considered the most critical for alcohol teratogens

More severe features of FAS Avg of 3 drinks/day following

conception (before pregnancy is confirmed), increases risk of having an FAS child

Santrock, J.W., Life Span Development, Brown Publishers, 1986.

Embryonic/Fetal Development

Criteria for FAS Diagnosis

A diagnosis requires the presence of all three of the following:– Documentation of three facial

abnormalities– smooth philtrum– thin vermillion border – small palpebral fissures

– Documentation of growth deficits– Documentation of CNS abnormalities

Facial Malformations

Short palpebral fissures

Abnormal philtrum

Thin upper lip Hypoplastic

midface Short nose

Facial Features of FAS

Changes Over Time

Physical features Shape of nose Coarsening facial features Weight gain Cognitive skills Behavior

Changes Over Time

FAS Diagnosis

To assist with differential diagnosis between FAS and environmental causes for CNS abnormalities it is important to obtain a complete and detailed history for the individual and his or her family.

Difficulties Identifying FAS

– Doctors describe facial features differently/no consistency

– Lack of FAS knowledge among care providers*– Lack of uniform diagnostic criterion*– MD resistance/concerns: stigmatization – Many other diagnoses and conditions are related

to FAS– Absence of documentation of Mother’s drinking

habits in medical records*

*Streissguth, Ann. (1997). Fetal Alcohol Syndrome: A Guide for Families and Communities. Paul H. Brooks Publishing Co., Baltimore, MD.

A Hidden Disability

FAS may be incorrectly labeled as a behavior disorder

There may be no visible indicators of a disability

Many cases of FAS undiagnosed FASD—many children have no

facial abnormalities

Criteria for Diagnosis

Maternal alcohol use during pregnancy is NOT a requirement for diagnosis*

Growth Retardation Height/weight – less than 10th

percentile Intrauterine growth retardation

and continued poor growth

* Often times this information is not known

Growth Retardation

History of growth deficits, even if resolved

Confirmed prenatal or postnatal height or weight, or both, at or below the 10th percentile, documented at anyone point in time (adjusted for age, sex, gestational age, and race or ethnicity)

Brain Development

Documented small overall head circumference (OFC) – Also known as microcephaly

– Includes head circumference at birth and over time

– At or below the 3rd or 10th percentile*

* Use of the 10th percentile results in more false positives, use of the 3rd percentile results in more false negatives.

Brain Changes

Clinically significant brain abnormalities observable through imaging techniques– Reduction in size of brain, areas of the brain

– Change in or absence of corpus callosum

– Change in cerebellum or basal ganglia

– Other structural abnormalities that may not necessarily result in functional deficits

CNS Abnormalities

Memory problems Attachment disorder Impaired motor skills Learning disabilities Problems with reasoning and judgment Inability to discern consequences of

actions Intellectual impairment

Neurodevelopmental Disorders

Developmental Disabilities

ADHD/ADD Speech/Language Disorders Difficulties with feeding Tactile dysfunction/overly stimulated Cognitive or intellectual deficits Delayed development Impaired visual skills Neurosensory hearing loss

Developmental Disabilities

Social skills– Lack of stranger fear– Naiveté and gullibility– Immaturity

Executive functioning deficits– Reasoning, judgment, planning

ahead

Motor Functioning Delays

For infants—poor suck, feeding difficulties

Delayed motor milestones Difficulty writing or drawing Balance problems Poor dexterity

Changes in Delays Across Development

Infancy and Preschool years– Facial features– Delays in feeding, motor delays

Adolescence and Adulthood– Mental Health problems– Inability to achieve independence– Criminal activity

Outcomes

Outcomes vary greatly among individuals

Diagnosis not an endpoint Co-occurring mental disorders Likely to need services throughout

life

Positive Outcomes

Be caring and creative Often be determined and eager to

please Respond well to structure,

consistency and close supervision Respond well to concrete

communication

Children with FAS tend to:

Negative Outcomes

Disrupted school experiences Legal problems Incarceration Mental health problems Substance abuse problems Inappropriate sexual behavior Dependence, unemployment

Children with FAS may have:

Protective Factors

Stable and nurturing home environment

Early diagnosis—by 6 years of age Absence of exposure to violence Few changes in caretaking placements Eligibility for social and educational

services

Foster Care System

Many foster and adoptive families do not receive education about FAS

The child’s family history is often unknown

Prevalence of foster children estimated to be 10 times greater than in the general population

Foster Care System

Social service workers, foster and adoptive parents are often not educated about the long-term effects of FAS.

Training should include education about effects and developmental needs of children with FAS.

Appropriate Services

Neuropsychological Assessments Early Intervention (Age 0 to 3) Special Education Services Parent and Caregiver Education Physical, Speech and Language and

Occupational Therapies Social Skills training

Cost of FAS in OregonBased on 1/1000 est.

*Larry Burd, Ph.D. , University of North Dakota, School of Medicine http://www.online-clinic.com/Content/FAS/fetal_alcohol_syndrome.asp

**The Lewin Group, article for publication: FAS Cost Estimates by State, 2006.

Estimated annual cost of Fetal Alcohol Spectrum Disorder in Oregon: – $83.3 million*

Estimated annual cost of FAS in Oregon– $68.3 million**

FAS in Oregon

Oregon’s Prevalence Rate– Approximately 48,000 babies are born each

year in Oregon

– Approximately or 1 out of every 2,000 babies is born with FAS in Oregon

– Approximately 24 babies are born each year in Oregon with FAS

– For ARND, the prevalence is 8 out of every 1,000 babies

Be Aware of….

Children with FAS/FASD may have trouble expressing themselves

Body language--know warning signs for frustration, sadness, anger and other emotions

Problem concepts including decision-making, time, impulsiveness and distinguishing between public and private behaviors.

What Works in the Classroom

Place child near the front of the room decrease distractions.

Allow student to have short breaks. Create borders such as armrests, footrests and

beanbag chairs. Have child perform one task at a time. As assignments become more difficult, give

deadlines and check on progress.

In The Classroom

Provide child with copy of notes. Behavior problems more apparent in grade

school. Diffuse situations calmly, move into a new activity.

Make eye contact, repeat things, use short instructions.

Be prepared for inconsistent performance, frustration with transitions and the need for individual attention.

Other Strategies

Use visuals, concrete examples, hands-on learning.

Encourage success, reward positive behavior with praise or incentives.

Middle school students should shift academic learning to daily living and vocational skills.

Key Issues

Information needed on neuro-developmental effects of prenatal exposure to alcohol

Improvements in clinical assessment tools All children be screened for FAS—should be

routine Better communication between doctors, correct

terminology for diagnosis Service agencies must qualify children with

FAS who don’t meet eligibility requirements.

Their Future Depends On Us

Research and resources needed to identify/treat women at risk for alcohol-exposed pregnancies.

Need awareness about dangers of drinking alcohol during pregnancy and FAS.

Summary

Fetal Alcohol Syndrome (FAS) is the leading cause of preventable mental retardation.

Awareness about dangers of drinking alcohol during pregnancy can help to prevent FAS.

Consistency in diagnoses can lead to better outcomes for children with FAS.

Resources

NOFAS---website– http://www.nofas.org/about/CDC

Don’t Open This---website– http://www.dontopenthis.org/

Centers for Disease Control (CDC)---website

– http://www.cdc.gov/ncbddd/fas/

Resources continued

Oregon Family Support Network,

1-800-323-8521. DHS

Website---http://www.oregon.gov/DHS/ph/wh/fas.shtml

Northwest Portland Area Indian Health Board, Suzie Kuerschner, 503-228-4185 www.npaihb.org

Book Resources

Fetal Alcohol Syndrome—A Guide for Families and Communities ---by Ann Streissguth

Damaged Angels ---by Bonnie Buxton The Broken Cord ---by Michael Dorris The Best I Can Be—Living with Fetal Alcohol

Syndrome Effects ---by Jodee Kulp Recognizing and Managing Children With Fetal

Alcohol Syndrome/Fetal Alcohol Effects: A Guidebook ---by Brenda McCreight, Ph.D.

References

Burd, Larry, Ph.D. , University of North Dakota, School of Medicine http://www.online-clinic.com/Content/FAS/fetal_alcohol_syndrome.asp.

Hymbaugh, K., Miller, L.A., Druschel, C.M., Podvin, D.W., Meaney, F.J., Boyle, C.A., and The FASSNet Team, (2002). A Multiple Source Methodology for the Surveillance of Fetal Alcohol Syndrome – The Fetal Alcohol Syndrome Surveillance Network (FASSNet), Teratology, 66:S41-S49.

"The International Classification of Diseases, 9th Revision, Clinical Modification" (ICD-9-CM), National Center for Health Statistics and Centers for Medicare and Medicaid Services, Sixth Edition, October 1, 2007.

The Lewin Group, article for publication: FAS Cost Estimates by State, 2006.

Santrock, J.W., Life Span Development, Brown Publishers, 1986.

References

Streissguth, Ann (1997). Fetal Alcohol Syndrome: A Guide for Families and Communities. Paul H. Brooks Publishing Co. Baltimore, MD.

Fetal Alcohol Syndrome: Guidelines for Referral and Diagnosis, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Department of Health and Human Services, National Task Force on FAS and FAE. July, 2004.

Project CHOICES Research Group. Alcohol-exposed pregnancy: characteristics associated with risk. Am J Prev Med 2002;23:166-173

Fetal Alcohol Syndrome Prevention Program Team

Julie McFarlane, MPH Women’s Health Manager 971-673-0365

Lesa Dixon-Gray, MSW-MPH, Program Coordinator971-673-0360

Emily HavelMedical Records Consultant971-673-0374

Barbara Pizacani, PhD- RN,

Epidemiology Consultant

971-673-0605

John Anderson

Research Analyst

971-673-1277