MRFASTC

FASD Foundation

Competency #1Midwest Regional Fetal Alcohol

Syndrome Training Center

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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).

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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-social-cultural aspects of FASDs.

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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

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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)

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• “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

Fetal Alcohol Syndrome Through the Ages

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• 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.”

Fetal Alcohol Syndrome Through the Ages

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• 1899 – William Sullivan120 female “drunkards” in prison compared to

sober female relativesPerinatal 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.

Fetal Alcohol Syndrome Through the Ages

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• 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)

Fetal Alcohol Syndrome Recognition

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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

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• 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

Fetal Alcohol Syndrome Prevention and Recognition

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“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

Fetal Alcohol Syndrome Recognition

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Fetal Alcohol Syndrome

• 1996 Institute of Medicine ReportMandated by U.S. CongressScientific review of the literature on effects,

diagnosis, treatment, and preventionConcluded that FAS, ARBD and ARND are

completely preventable and represent a “major public health concern.”

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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

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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

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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

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• 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

Effects of Alcohol on Fetus

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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

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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

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Prevention of Alcohol-Exposed Pregnancies

• Universal Warning labels on alcoholic beverages, public

service announcements, mass media campaigns

• SelectiveScreening women for alcohol use and providing

brief intervention

• IndicatedAlcohol treatment and measures to prevent

pregnancy

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• 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

FAS Screening and Diagnosis

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• More recent term is fetal alcohol spectrum disorders or FASDsUmbrella term describing range of effects

- Physical

- Mental

- Behavioral

- Learning disabilitiesPossible life-long implications

FAS Screening and Diagnosis

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• 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 dysmorphiaGrowth problemsCentral nervous system abnormalities

FAS Screening and Diagnosis

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• Facial dysmorphia Smooth philtrum Thin vermillion border Small palpebral fissures

• Growth problems Height and/or weight at or below 10th percentile

• Central nervous system impairment Corpus callosum, cerebellum, basal ganglia, areas

surrounding the inter-hemispheric fissure

FAS Screening and Diagnosis

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Fetal Alcohol Syndrome Associated Features

• Limb abnormalities

• Crease differences

• Cardiac

• Small genitalia

• Ocular

• Skeletal

• Auditory

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Growth in FAS

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Growth in FAS - Males

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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

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Spectrum of Clinical Symptoms

• Mental disability

• Learning disability

• ADD, ADHD

• Poor memory and recall

• Poor compliance

• Poor planning and impulsivity

• Abstraction difficulties

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FAS and the BrainIQ

at 8

yrs

Full scale Verbal scale Performance scale

Normal controls

Prenatal exposure to alcohol

FAS

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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

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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 servicesSpecial educationFoster careIncarceration

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Collectively, scientific studies clearly indicate that

NO alcohol during pregnancy

remains the best medical advice!

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FAS – The Road Ahead

• FAS – Only the tip of the iceberg

• Prompt diagnosis leads to better prognosis

• Treatment begins with prevention

FAS

FASDs