1. Competency #1 Midwest Regional Fetal Alcohol Syndrome Training Center
FASD Foundation
Competency #1
Midwest Regional Fetal Alcohol
Syndrome Training Center

2. 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).

3. 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.

4. 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
Historically, women have been less likely to drink alcohol than men; however, that discrepancy is quickly disappearing.
More than half of all women of childbearing age (18–44 years of age) report some alcohol use, and one in eight reports binge drinking in the past month. Many of these women are sexually active and often do not take effective measures to prevent pregnancy. These women are at high risk for an alcohol-exposed pregnancy (AEP) as they might continue drinking early in pregnancy at levels that are harmful to the fetus.
Although most women reduce alcohol consumption after learning that they are pregnant, in the United States, 10% of pregnant women report consuming any alcohol and 2%–4% report binge drinking. In these findings, binge drinking was defined as consuming five or more drinks on any one occasion. More recently, the definition of binge drinking for women has been changed to four or more drinks on any one occasion.
Human and animal studies have clearly demonstrated that prenatal exposure to alcohol is harmful to the fetus, resulting in physical malformations, growth problems, or abnormal functioning of the central nervous system. These negative effects are lifelong and serious.
Children born with prenatal alcohol exposure might have a range of problems, from subclinical effects to full fetal alcohol syndrome (FAS), conditions that result in significant morbidity and mortality

5. 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)

6. 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

7. Fetal Alcohol Syndrome Through the Ages
William Hogarth, 1751
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.”

8. 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.

9. 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)
Paul Lemoine of France first described the effects of prenatal alcohol exposure in the medical literature in This sentinel article was later translated to English.
The most important breakthrough in the understanding and documenting of FAS in the United States came through the work of Drs. Jones and Smith and their colleagues (1973). They recognized and described a cohort of children who had similar facial dysmorphology and who had all been exposed to excessive amounts of alcohol in utero. Common to all children was a distinctive constellation of physical abnormalities, growth retardation, central nervous system damage, and prenatal alcohol exposure. Researchers determined that all the children in the study had suffered teratogenic damage due to maternal alcohol consumption during the gestational period. The term fetal alcohol syndrome (FAS) was introduced to describe the resulting condition.

10. 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
Surgeon General’s Advisory. In 1981, the U.S. Surgeon General issued a public health advisory warning that alcohol use during pregnancy could cause birth defects. This warning was reissued by the Surgeon General in The following is an excerpt from the 2005 Advisory:
Based on the current, best science available we now know the following:
- Alcohol consumed during pregnancy increases the risk of alcohol related birth defects, including growth deficiencies, facial abnormalities, central nervous system impairment, behavioral disorders, and impaired intellectual development.
- No amount of alcohol consumption can be considered safe during pregnancy.
- Alcohol can damage a fetus at any stage of pregnancy. Damage can occur in the earliest weeks of pregnancy, even before a woman knows that she is pregnant.
- The cognitive deficits and behavioral problems resulting from prenatal alcohol exposure are lifelong.
- Alcohol-related birth defects are completely preventable.
For these reasons:
- A pregnant woman should not drink alcohol during pregnancy.
- A pregnant woman who has already consumed alcohol during her pregnancy should stop in order to minimize further risk.
- A woman who is considering becoming pregnant should abstain from alcohol.
- Recognizing that nearly half of all births in the United States are unplanned, women of child-bearing age should consult their physician and take steps to reduce the possibility of prenatal alcohol exposure.
- Health professionals should inquire routinely about alcohol consumption by women of childbearing age, inform them of the risks of alcohol consumption during pregnancy, and advise them not to drink alcoholic beverages during pregnancy.

11. 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
Beyond the medical and research literature, FAS and the dangers of prenatal alcohol exposure were brought to public awareness by the book The Broken Cord. This book describes the author’s experiences with his adopted son, Adam, who had FAS. He explained the negative consequences of prenatal alcohol exposure in a way that could be understood by the general public, rather than by medical professionals with particular specialties.

12. 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

13. 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.”

14. 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
Obstetrical textbooks Recommendations about drinking during pregnancy. 
American Journal of Preventive Medicine, Volume 23, Issue 2, Pages
K. Loop

15. 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
In 2004 the CDC released those diagnostic criteria recommending that all children be screened for Fetal Alcohol Syndrome, and all women be screened for alcohol use.
In 2005, a second Surgeon General’s advisory on alcohol use and pregnancy recommended that besides pregnant women, those trying to get pregnant should abstain from alcohol. 15

16. 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 16

17. 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

18. Incidence of FAS Down syndrome 1/800 births Cleft lip+/-palate
Spina bifida
1/1000 births
FAS
1-2/1000 births
Leading known cause of mental disability in U.S.
Entirely preventable

19. 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
CDC reports FAS prevalence rates from 0.2 to 1.5 cases per 1,000 births across various populations in certain parts of the United States. These rates are comparable to or greater than other common developmental disabilities such as Down syndrome or spina bifida. Of the approximately 4 million infants born each year, an estimated 1,000 to 6,000 will be born with FAS. Some researchers have estimated the rates of the full range of FASDs to be as high as 9 or 10 per 1,000 live births. This translates to about 40,000 alcohol-affected births per year in the United States.
Disadvantaged groups, American Indians/Alaska Natives, and other minorities have been documented to have prevalence rates as high as 3 to 5 cases of FAS per 1,000 children. Among children in foster care, the prevalence rate for FAS is 15 cases per 1,000 children. Finally, among individuals in the juvenile justice system, more than 200 per 1,000 20% were found to have FAS or a related disorder.

20. Prevention of Alcohol-Exposed 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
Strategies aimed at preventing alcohol-exposed pregnancies include the following:
- Universal prevention efforts aim to educate the public about the dangers of alcohol use during pregnancy. Prevention strategies include warning labels on alcoholic beverages, public service announcements, and mass media campaigns.
- Selective prevention interventions target individuals or a subgroup of the population who are at increased risk for having an alcohol-exposed pregnancy, meaning all women of childbearing age who drink alcohol. Prevention strategies include screening women for alcohol use and providing brief intervention for women at risk for an alcohol-exposed pregnancy. Alcohol screening instruments include the TWEAK, T-ACE, CAGE, and AUDIT.
- Indicated prevention interventions target women at highest risk for giving birth to a child with an FASD, including women who have previously given birth to a child with an FASD or a woman who has a known history of alcohol abuse or dependence. Prevention strategies include alcohol treatment and measures to prevent pregnancy.

21. 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

22. 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

23. 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
To receive the diagnosis of FAS, an individual must have documentation of all three components of the diagnostic criteria (i.e., dysmorphia, growth deficits, and a CNS abnormality). In addition, the diagnosis should be characterized by the information available about exposure history as either (a) confirmed prenatal alcohol exposure or (b) unknown prenatal alcohol exposure.

24. FAS Screening and Diagnosis
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

27. 20

28. Fetal Alcohol Syndrome Associated Features
Limb abnormalities
Crease differences
Cardiac
Small genitalia
Ocular
Skeletal
Auditory

29. Growth in FAS

30. Growth in FAS - Males

31. 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

32. Spectrum of Clinical Symptoms
Mental disability
Learning disability
ADD, ADHD
Poor memory and recall
Poor compliance
Poor planning and impulsivity
Abstraction difficulties

33. FAS and the Brain IQ at 8 yrs Full scale Verbal scale
Performance scale
Normal controls
Prenatal exposure to alcohol
FAS
FAS – fetal alcohol syndrome; PEA – prenatal exposure to alcohol; NC – normal control;
FSIQ – full scale IQ; VIQ – verbal IQ; PIQ – performance IQ

34. 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
The costs of FASDs are beginning to be understood and formally addressed. To date, cost estimates are only available for FAS. Annual costs associated with FAS in the United States are estimated to be approximately $4 billion. In 2002, the estimated lifetime cost for one individual with FAS was $2 million. This is an average for all people with FAS. Those with severe problems, such as profound mental retardation, have much higher costs.

35. 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

36. Collectively, scientific studies clearly indicate that
NO alcohol during pregnancy
remains the best medical advice!

37. FAS – The Road Ahead FAS – Only the tip of the iceberg
Prompt diagnosis leads to better prognosis
Treatment begins with prevention
FAS
FASDs