Duane syndrome

Ten years ago, a coalition of public and private organizations initiated a public education campaign to reduce the risk of sudden infant death syndrome (SIDS). The "Back to Sleep" campaign encouraged parents and caregivers to place infants on their backs to sleep to reduce the risk of SIDS. Over the past decade, this campaign has achieved remarkable results: infant back or side sleeping has increased from 13 percent to 70 percent, and the SIDS rate in the united States has declined by more than 50 percent. When the campaign began, more than 5,000 infants died of SIDS each year; now the number is fewer than 2,500. (1)

A diagnosis of SIDS is given when the sudden death of an infant younger than one year remains unexplained even after a complete autopsy, death scene investigation, and review of clinical history. Prior to death, the infant appears to be healthy with no indicated symptoms. Death from SIDS occurs quickly during sleep, with no signs of suffering.

Although we do not know what causes SIDS, we do know that babies placed on their backs at nighttime and nap time are at a much lower risk for SIDS than are babies placed to sleep on their stomachs. This knowledge results from years of careful research and observational studies from other countries. In 1992, the American Academy of Pediatrics (AAP) recommended that healthy infants younger than one year be placed on their backs to sleep in order to reduce the incidence of SIDS. (2) Based on this recommendation, the national Institute of Child Health and Human Development (NICHD) began to explore the potential benefits of a public education campaign. Over the next two years, NICHD staff conducted additional research and concluded that back sleeping was indeed safe and did not pose other health risks (aspiration, pneumonia) to infants. With that information, the NICHD formed a partnership with the AAP, the Maternal and Child Health Bureau of the Health resources and Services administration, the SIDS alliance (now First Candle/SIDS alliance), and the association of SIDS and Infant Mortality Programs to establish the "Back to Sleep" public education campaign.

In spite of the dramatic improvement seen in the past decade, there continues to be a disturbing disparity between the rates of SIDS in white and black infants. although black infants have benefited proportionately as much from the "Back to Sleep" campaign as white infants, the SIDS rate in black infants remains double that of white infants. (1) To address this disparity and raise awareness in communities at the highest risk, the NICHD invited leaders of black organizations to participate in developing a strategy and crafting messages that would reach black parents and caregivers. With its partner organizations, the NICHD developed "Babies Sleep Safest on Their Backs: a resource Kit for reducing the risk of SIDS in African American Communities." (3) The kit provides resources for the members of these organizations to initiate SIDS risk-reduction programs in their local communities. In 2001, NICHD formed a unique coalition with the alpha Kappa alpha Sorority, Inc., the national Coalition of 100 Black Women, and Women in the NAACP (National Association for the Advancement of Colored People) to conduct an intensive community-based outreach campaign. Persons in these organizations are now conducting a face-to-face, one-on-one intervention in communities around the country. Parents and caregivers are learning how to reduce the risk of SIDS, and the information is from a trusted source in their community rather than from a public service announcement on television.

To date, members of the partner organizations have conducted more than 1,600 regional and local workshops on how to reduce the risk of SIDS. This grass roots effort continues, and we support it by providing materials and technical assistance to community groups. The results of this expanding effort will not be known immediately. Although the most current data from the national Center for Health Statistics show the SIDS rate among black infants remains more than twice the rate of white infants, (1) we do not accept this disparity as inevitable. We have developed a strategic plan to continue investigating the causes of SIDS and ways to prevent those causes. The plan calls for research into the etiology and pathogenesis of SIDS, the development of predictive screening tools for SIDS risk, implementation of strategies to reduce the SIDS risk, and activities to close the health disparities gap in SIDS. (4) For additional information on SIDS and the "Back to Sleep" campaign, call 1-800-505-CRIB (1-800-505-2742) or visit the Web site at http://www.nichd.nih.gov/sids.

REFERENCES

(1.) Mathews TJ, Menacker F, MacDorman MF; Centers for Disease Control and Prevention, national Center for Health Statistics. Infant mortality statistics from the 2002 period: linked birth/infant death data set. Natl Vital Stat rep 2004;53:1-29. accessed online March 18, 2005, at http://www.cdc.gov/nchs/data/nvsr/nvsr53/ nvsr53_10.pdf.

(2.) American Academy of Pediatrics AAP Task Force on Infant Positioning and SIDS: Positioning and SIDS [published correction appears in Pediatrics 1992;90(2 pt 1):264]. Pediatrics 1992;89(6 pt 1):1120-6.

(3.) National Institute of Child Health and Human Development (U.S.). Office of research reporting. Babies sleep safest on their backs: a resource kit for reducing the risk of Sudden Infant Death Syndrome in African American communities. Bethesda, Md.: national Institutes of Health, 2000.

(4.) National Institute of Child Health and Human Development (U.S.). Targeting sudden infant death syndrome (SIDS): a strategic plan. Bethesda, Md.: national Institute of Child Health and Human Development, 2001.

DUANE ALEXANDER, M.D., is director of the national Institute of Child Health and Human Development at the national Institutes of Health, Bethesda, Md. Dr. Alexander received his medical degree from Johns Hopkins university School of Medicine in Baltimore, where he also completed a residency in the Department of Pediatrics. In 2004, the American Medical association awarded him for his leadership in research on sudden infant death syndrome.

Address correspondence to Duane Alexander, M.D., National Institute of Child Health and Human Development, 31 Center Dr., Bldg. 31, Room 2A32, MSC 2425, Bethesda, MD 20892-2425 (e-mail: alexandd@exchange.nih.gov). Reprints are not available from the author.

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