Running Head: FETAL ALCOHOL SYNDROME 1

FETAL ALCOHOL SYNDROME 2

Fetal alcohol syndrome (FAS) is the most recognizable form of fetal alcohol spectrum disorders (FASD). FAS is characterized by a pattern of minor facial anomalies, prenatal and postnatal growth retardation, and central nervous system abnormalities. Those born with FAS often have behavioral and learning difficulties. The consequences of the damages caused by the mother's drinking is lifelong (Wattendorf & Muenke, 2005). To date, there has been no extensive population-based studies done (Vaux & Chambers, 2012). However, data in one sample demonstrated that approximately 1 in 100 children have alcohol-related effects. In high-risk pregnancies, predicted incidences of fetal alcohol syndrome are approximate and differ because of varied definitions of heavy drinking and inconsistent methods of diagnosis. For this reason, rates range from 4% to as much as 44%.The estimation of FAS in the United States is 1-2 cases per 1000 live births (Wattendorf & Muenke, 2005) . Fetal alcohol exposure is the leading known cause of mental retardation in the Western world. The term Fetal Alcohol Syndrome was first published in a 1973 article in the British medical journal The Lancet (O'Neil, 2013). A group of psychiatrists and pediatricians at the University of Washington Medical school collaboratively defined the defects and developmental delays that can affect children born to alcoholic mothers. They observed both pre- and postnatal growth. Those observations included pre- and postnatal growth defects, minor facial anomalies, and damage to the developing brain that can result in behavioral, learning, and cognitive abnormalities. No two individuals will present the same cluster of deformities and disabilities. Growth, facial defects, central nervous system dysfunction, and alcohol exposure all vary along a continuum. The term FAS implies that the condition is permanent and was caused by prenatal alcohol exposure (Astley & Clarren, 2000).
FETAL ALCOHOL SYNDROME 3 Growth deficiencies are documented when height, weight, or both fall at or below the 10th percentile of standardized charts (Chudley et al., 2005). Growth measurements must be adjusted for parental height, gestational age (for a premature infant), and other postnatal factors (e.g., poor nutrition), although birth height and weight are the preferred measurements (Chudley et al., 2005). Facial characteristics are the most notable in FAS. The three FAS facial features are: (1) A smooth philtrum, the divot or groove between the nose and upper lip flattens with increased prenatal alcohol exposure; (2) Thin vermilion: the upper lip thins with increased prenatal alcohol exposure;(3) Small palpebral fissures: eye width decreases with increased prenatal alcohol exposure (Vaux & Chambers, 2012). Central nervous system (CNS) damage is the primary feature of any FASD diagnosis. Prenatal alcohol exposure can cause brain damage ranging from subtle to severe, depending on the amount, timing, and frequency of the exposure as well as genetic predispositions of the fetus and mother. During the third trimester, damage can be caused to the hippocampus, which plays a role in memory, learning, emotion, and encoding visual and auditory information ("What is Fetal Alcohol Syndrome?," 2013). Central nervous system dysfunction can include: microcephaly (small brain size), tremors, seizures, hyperactivity, fine motor skill difficulties, gross motor skill difficulties, attention deficits, learning disabilities, mental retardation, developmental delays, and intellectual disabilities (Sanford School of Medicine, 2009). Primary disabilities are those caused by structural and functional damages to the brain. Secondary disabilities are those the individual is not born with, but may be acquired as a result of central nervous system damage. It is important to note that not all exhibit secondary disabilities. The most common are: mental health
FETAL ALCOHOL SYNDROME 4 problems, disruptions in school, alcohol or drug use, legal problems, confinements, inappropriate sexual behavior, and dependant living (Sanford School of Medicine, 2009). The presentation of each individual feature of the syndrome may be variably expressed with age. The term Neonatal Abstinence Syndrome (NAS), refers to infants suffering through drug withdrawal after birth. Many women are multiple drug users, and the mother of a baby with NAS has likely been using alcohol as well. Affected infants may exhibit a combination of lasting NAS symptoms and emerging FAS symptoms (Ministry for Children and Families, 1999). Symptoms in infancy may include: irritability, excessive crying, a higher susceptibility to illness, feeding difficulties; often disinterested in food, and erratic sleeping patterns. They may exhibit sensitivity to sights, sounds, and touch. The reaching of milestones (e.g. walking, talking, imitating sounds) is delayed. There are also problems with bonding (Sanford School of Medicine, 2009) . Children at the elementary school level face many challenges. Behavioral deficits are reported with regard to interpersonal relationships and communication (Ministry for Children and Families, 1999). Temper tantrums, impulsivity, lying and stealing is common. They may have problems separating fantasy from reality. Attention deficits and poor impulse control become more apparent as the demands for class-room attention increase. Their capacity for learning is hampered by memory loss and retrieval problems. Information is learned, retained for a while and then lost; poor performance of learned tasks may appear deliberate (Ministry for Children and Families, 1999). The cognitive problems of memory, recall, and reality remain throughout junior high and high school. The affected has poor reasoning skills, lacks in time management, shows no motivation, and becomes easily frustrated. As they progress from early to late
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adolescents, behaviors such as criminal activity, drug or alcohol use, and sexual activity are commonly seen. It is at this stage clinical depression may become evident. "An individual with a typical clinical profile for FASD will evidence several risk factors for suicide (for example, impulsivity, a comorbid mood disorder, and substance abuse problems) and should be monitored closely, irrespective of intellectual ability" (The Canadian Journal of Psychiatry, 2005). Because of their disabilities and the secondary conditions which they can develop, adults with fetal alcohol syndrome often have difficulty in holding jobs and living independently as productive members of society (Sanford School of Medicine, 2009). They may strongly believe their capabilities and skills are higher than they are, rejecting of anything that looks like an attempt to control. Commonly, there is continued difficulty with the legal and mental health systems. Some are judged incompetent to stand trial, others are in the prison system. Society has a tendency to use jail as residential treatment. Individuals who are diagnosed early have more positive outcomes that those who are not (Substance Abuse and Mental Health Services Administration, 2012). The earlier a diagnosed child is placed in appropriate educational classes and given essential social services, the more improved the prognosis. Early diagnosis also helps family members and teachers understand the reactions and behavior of the FAS child, which can differ widely from other children in the same situations. Children with fetal alcohol syndrome have been found to be more sensitive to disruptions, transient lifestyles and harmful relationships. To prevent the secondary conditions associated with FAS, support from family and the community is imperative (Substance Abuse and Mental Health Services Administration, 2012) .

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Most individuals with FAS have trouble living independently, however some can live "interdependently." To be successful they need a strong circle of support comprised of family, mentors, social workers, job coaches, and others who understand fully the realities and limitations associated with FAS (Substance Abuse and Mental Health Services Administration, 2012) . Most adults will need assistance to handle the demands of work and home. Some areas of importance are employment, money management, housing, and social skills. They may require close supervision in helping to make daily decisions. People with a FASD may have trouble gaining financial benefits because states often base eligibility requirements of developmental disabilities on IQ tests. Many people with FAS have normal IQs and do not qualify. Housing is also an area that proves difficult. Those who meet certain criteria may be eligible for Federal Housing Programs, but the standards and accessibility vary widely. Group homes for individuals with developmental disabilities or mental illness may be an option, however can be a poor fit for someone with FAS who may function at a higher level than their housemates or have different needs. Independent living with services may work for persons who do not need constant supervision (Sanford School of Medicine, 2009). FASD are 100% preventable, however; the disease of alcoholism (the root cause) is difficult to mange (Ministry for Children and Families, 1999). In order to prevent FAS, an alcoholic mother would need to stop drinking for the duration of her pregnancy. Alcohol rehabilitation programs are seen in a variety of settings, including: hospital in-patient and out patient programs, residential rehab programs, partial hospitalization or day treatment, addictions counseling and AA groups. Many states have programs that assist pregnant or newly parenting mothers who have substance abuse problems. The Vulnerable Infants Program of Rhode Island (VIP-RI),
FETAL ALCOHOL SYNDROME 7 created in 2004, is a care coordination program to promote permanency for substance-exposed infants by addressing parental needs and increasing collaboration among social service agencies. It began as a demonstration grant to provide care coordination services to mothers with an open child welfare case because of drug use during pregnancy. Enrolment in VIP-RI typically occurs following delivery. If prenatal substance exposure is discovered by either through maternal self-report or a positive toxicology screen, a hospital social worker informs the mother about VIP-RI and makes a referral to the program. Medical services provided include family planning, pre- and postnatal care, and HIV test counselling. Financial services include assistance with obtaining entitlement benefits and receiving tangible support such as food and clothing.Over the first four years of the program, there was a decrease in time spent in the newborn nursery beyond medical necessity and identification of permanent placements by 12 months for 84% of infants, with the majority of infants (78%) placed with biological parents or relatives (Twomey, Caldwell, Soave, Fontaine, & Lester, 2010). Most people see alcoholism as having elements of both a disease and a moral weakness. I have encountered many who do not consider alcoholism as a disease; they see it as a lack of "will-power" or control. It is a challenge to admit to having a problem that not only lacks understanding, but lacks empathy from society. A woman who is pregnant and truly wants help faces greater embarrassment. The perception of a mother (either real or imagined by her) who can not put her child before her drinking is a horrible risk she has to face. Until public perceptions and social stigmas attached to substance abuse are entirely changed, FAS will never be fully eradicated.

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References
Astley, S. J., & Clarren, S. K. (2000). Alcohol and alcoholism. Diagnosing the Full Spectrum of Fetal Alcohol- Exposed Individuals: Introducing the 4 Diget Diagnostic Code, 35(4), 400-410. doi: 10.1093/alcalc/35.4.400
Chudley, A. E., Conry, J., Cook, J. L., Loock, C., Rosales, T., & LeBlanc, N. (2005). Canadian Medical Association Journal. Fetal Alcohol Spectrum Disorder: Canadian Guidelines for Diagnosis, 172(5). doi: 10.1503/cmaj.1040302
Ministry for Children and Families. (1999). Parenting children affected with fetal alcohol syndrom: A guide to daily living [Brochure]. Author. Retrieved October 19, 2013, from http://www.scribd.com/doc/34201697/Daily-Guide-for-Living-Parenting-Children-Affected-by-Fetal-Alcohol-Syndrome
O'Neil, E. (2013, September 25). The embryo project encyclopedia. The Discovery of Fetal Alcohol Syndrome. Retrieved October 18, 2013, from http://embryo.asu.edu/pages/discovery-fetal-alcohol-syndrome
Sanford School of Medicine. (2009). Fetal alcohol spectrum disorders [Brochure]. Author. Retrieved October 19, 2013, from http://www.usd.edu/medical-school/center-for-disabilities/fetal-alcohol-spectrum-disorders-education-strategies-handbook.cfm
Substance Abuse and Mental Health Services Administration. (2012). Independent living for people with fetal alcohol spectrum disorders [Brochure]. Author. Retrieved October 20, 2013, from http://healthfinder.gov/FindServices/Organizations/Organization.aspx?code=HR3673

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Suicidality in adolescents and adults with fetal alcohol spectrum disorders. (2005). The Canadian Journal of Psychiatry. Retrieved October 20, 2013, from http://ww1.cpa-apc.org/Publications/Archives/CJP/2005/february/O’Malley.asp
Twomey, J. E., Caldwell, D., Soave, R., Fontaine, L. A., & Lester, B. M. (2010). Result Filters [Abstract]. Vulnerable Infants Program of Rhode Island: Promoting Permanency for Substance-exposed Infants., 89(3), 121-142. Retrieved October 20, 2013, from http://www.ncbi.nlm.nih.gov/pubmed/20945808
Vaux, K. K., & Chambers, C. (2012, October 17). Fetal alcohol syndrome . Fetal Alcohol Syndrome. Retrieved October 18, 2013, from http://emedicine.medscape.com/article/974016-overview
Wattendorf, D. J., & Muenke, M. (2005, July 15). Fetal alcohol spectrum disorders. - American Family Physician. Retrieved October 18, 2013, from http://www.aafp.org/afp/2005/0715/p279.html
What is Fetal Alcohol Syndrome? (2013, October 19). What Is Fetal Alcohol Syndrome? Retrieved October 19, 2013, from http://www.news-medical.net/health/What-is-Fetal-Alcohol-Syndrome.aspx