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Birth Defects - Consequences Of Birth Defects

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An infant with a birth defect presents many challenges both for the child and the family. Children with sensory abnormalities, such as hearing or sight loss, have been shown to experience the greatest difficulty in psychosocial adjustment, whereas children with cardiac malformations experience maladjustment to a lesser extent. There have not been many studies addressing either the type of psychological problems or the long-term effects experienced by children with birth defects. A study of over 3,000 children in Canada reported that most children with cystic fibrosis (an inherited gene mutation that causes problems with the lungs, pancreas, and other organs) have some type of major psychiatric diagnosis, with anxiety disorder being the most common. Long-term research is needed, however, to assess any lasting effects of a child's condition on his or her mental and emotional well-being.

One component of a child's psychosocial development is related to social pressure. Studies have found that individuals with spina bifida and Down syndrome do not perceive themselves as sick. Many of the social difficulties experienced by children with birth defects are not caused directly by the anomaly but by the expectations of what is normal and expected in their communities.

Studies of the families of children with birth defects have focused on psychological stresses experienced by mothers. Mothers of infants with very low birthweights (which is a factor closely related to birth defects) experience greater psychological stress than mothers of normal weight infants. Overall, studies have shown that families of children with birth defects may experience more distress, as measured by higher levels of mental health treatment, than families of children without birth defects. These families, however, are no more prone to divorce, social isolation, or alcohol problems than families without a child affected by a birth defect.

There are a growing number of web-based resources for information about birth defects. The March of Dimes and the Centers for Disease Control and Prevention provide information and links to other web sites for information about specific conditions. Additionally, there are state and national birth defect monitoring programs. The purpose of these projects is to conduct surveillance about birth defects to target information dissemination, track changes in prevalence, and identify trends. This information stimulates research about prevention and affects program development. Several states use information from their birth defects registries to refer infants and their families to appropriate services.

See also: TERATOGENS

Bibliography

Asch, Adrienne. "Prenatal Diagnosis and Selective Abortion: A Challenge to Practice and Policy." American Journal of Public Health 89 (1999):1649-1657.

Cadman, David, Micheal Boyle, Peter Szatmari, and David R. Offord. "Chronic Illness, Disability, and Mental and Social Well-Being: Findings of the Ontario Child Health Study." Pediatrics 79 (1987):805-813.

Centers for Disease Control and Prevention. "Recommendations for the Use of Folic Acid to Reduce the Number of Cases of Spina Bifida and Other Neural Tube Defects." Morbidity and Mortality Weekly Report 41, no. RR-14 (1992).

Gedaly-Duff, Vivian, Susan Stoeger, and Kathleen Shelton. "Working with Families." In Robert E. Nickel and Larry W. Desch eds., The Physician's Guide to Caring for Children with Disabilities and Chronic Conditions. Baltimore: Brookes, 2000.

Heller, Anita, Sandra Rafman, Inta Svagluis, and Ivan Barry Pless."Birth Defects and Psychosocial Adjustment." American Journal of Diseases of Children 139 (1985):257-263.

Kalter, Harold, and Josef Warkany. "Congenital Malformations:Etiologic Factors and Their Role in Prevention." New England Journal of Medicine 308 (1983):424-431.

Lynberg, Michele C., and Larry D. Edmonds. "Surveillance ofBirth Defects." In William Halpern and Edward Baker eds., Public Health Surveillance. New York: Van Nostrand Reinhold, 1992.

National Center for Health Statistics. "Trends in Spina Bifida and Anencephalus in the United States, 1991-1999."Health EStats, December 2000.

Nickel, Robert E. "Prenatal Drug Exposure." In Robert E. Nickel and Larry W. Desch eds., The Physician's Guide to Caring for Children with Disabilities and Chronic Conditions, 4th edition. Baltimore: Brookes, 2000.

Nickel, Robert E., and Larry W. Desch, eds. The Physician's Guide to Caring for Children with Disabilities and Chronic Conditions, 4th edition. Baltimore: Brookes, 2000.

Schott, Jean-Jacques, D. Woodrow Benson, Craig T. Basson, William Pease, G. Michael Silberbach, Jeffrey P. Moak, Barry J. Maron, Christine E. Seidman, and Jonathan G. Seidman. "Congenital Heart Disease Caused by Mutations in the Transcription Factor NKX2-5." Science 281 (July 1998):108-111.

Singer, Lynn T., Ann Salvator, Shenyang Guo, Marc Collin, Lawrence Lilien, and Jill Baley. "Maternal Psychological Distress and Parenting Stress after the Birth of a Very Low-Birthweight Infant." Journal of the American Medical Association 281 (1999):799-805.

Anita Farel

Robert Meyer

Maggie Hicken

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