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The term fetal alcohol syndrome (FAS) refers to the most severe permanent effects of a child’s exposure to alcohol while in the mother’s womb, including mental retardation, abnormal physical appearance and behavior, and extreme limitation of normal lifetime capabilities.
Less extreme effects of fetal alcohol exposure may include permanent brain damage plus lifelong behavioral, educational and socialization problems; these are referred to as fetal alcohol spectrum disorders. (FASD)
Worldwide, fetal alcohol exposure is considered to be the most significant known cause of mental retardation. In addition to representing a tragedy for the families who experience the effects of FAS/FASD, the disorders also are costly; the Centers for Disease Control estimates that the lifetime cost of caring for a person with fetal alcohol syndrome is $2 million.
Although the incidence of FAS/FASD varies across the United States (a conservative estimate is that one of every 100 babies born has some form of the disorders), the CDC estimates that 29 percent to 50 percent of the women of childbearing age in the Mid-South drink alcohol, and 5 percent to 16 percent are heavy drinkers.
We know of no certain relationship between the amount of alcohol a woman consumes during her pregnancy and the severity of the outcome for her child. Factors such as genetics and the length of time alcohol is used through a series of pregnancies may affect the outcome, and there may also be some contribution to FAS/FASD from fathers who consume alcohol.
If FAS/FASD is recognized early on, some interventions can improve the situation, but behavioral modifications are limited. There are other physical ramifications, such as abnormalities in vision, hearing, movement and coordination, plus more frequent illnesses. Children with FAS/FASD suffer lifelong consequences through no fault of their own. When the damage occurs, there is no cure.
We face a host of problems in identifying children suffering from FAS/FASD. There are no simple medical tests that can make this diagnosis. A trained professional must take a history and perform enough physical and functional tests to rule out other conditions that might have overlapping symptoms. Here, we also fall short. My own institution, the University of Tennessee Health Science Center, has begun training psychiatry residents in these disorders, but we do not include alcoholism or FAS/FASD in the curriculum for any of our student health care professionals. This needs to be changed.
There is a lack of social services available to support the needs of children with FAS/FASD and the needs of their often overwhelmed, isolated caregivers. Our schools can’t properly educate children with these disorders. Our prisons are filled with people suffering from them.
Families cannot receive assistance for a disability until it is officially recognized. Recognition of a disability requires a group of people — individuals diagnosed with FAS/FASD, their caretakers and professionals who interface with both — to work together to seek training programs that can help them, and funding for such programs. Then school personnel and justice system professionals can be taught to deal with FAS/FASD children. All of this requires getting the attention of elected officials and other policymakers.
A group of concerned citizens — relatives of children with FAS/FASD, treatment professionals and scientists — is taking a first step by forming a local chapter of the National Organization on Fetal Alcohol Syndrome (nofas.org). NOFAS-MidSouth will serve as a community resource — a point of contact for those concerned with and about FAS/FASD, a locus for those who need information and support — through its new website NOFAS-MidSouth.org. With assistance from The Urban Child Institute, we will begin to address the needs of the FAS/FASD community by providing answers, help, and hope.
Andrea J. Elberger, Ph.D., is a professor in the Department of Anatomy and Neurobiology at the University of Tennessee Health Science Center. This is one in a series of monthly guest columns on the importance of public/private investment in early childhood. For more information, call The Urban Child Institute at 901-385-4233 or visit tuci.org.
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Pregnancy, Alcohol Add Up to Tragedy
By Andrea J. Elberger, Special to The Commercial Appeal
February 10, 2013