Guidelines for Death Scene Investigation of Sudden, Unexplained Infant Deaths: Recommendations of the Interagency Panel on Sudden Infant Death Synd

Participating Organizations U.S. Department of Health and Human Services, Interagency Panel on Sudden Infant Death Syndrome

Centers for Disease Control and Prevention

Consumer Product Safety Commission

Food and Drug Administration

Health Resources and Services Administration

(Maternal and Child Health Bureau)

Indian Health Service

National Institutes of Health

National Center on Child Abuse and Neglect

U.S. Department of Defense

U.S. Department of Justice

Participants Workshop on Guidelines for Scene Investigation

of Sudden Unexplained Infant Deaths

Randall C. Alexander, M.D. American Academy of Pediatrics Iowa City, IA

Susan Alpert, Ph.D., M.D. Center for Devices and Radiologic Health Food and Drug Administration Rockville, MD

James D. Beisner, M.P.P.A. Chief Deputy Coroner, Orange County Santa Anna, CA

Manon A. Boudreault, M.P.H. Consumer Product Safety Commission Bethesda, MD

Karen H. Bourdon, M.A. National Institute of Mental Health National Institutes of Health Rockville, MD

Kevin E. Bove, M.D. Society for Pediatric Pathology Cincinnati, OH

Denise R. Brooks, M.S., R.R.T. Institute for Child Survival, Inc. Acworth, GA

Joye Maureen Carter, M.D. Association of State and Territorial Health Officials Washington, DC

Gilberto F. Chavez, M.D., M.P.H. California Department of Health Services Sacramento, CA

Olivia J. Cowdrill, M.S. National SIDS Resource Center McLean, VA

Dale P. Dirks Health and Medicine Council of Washington Washington, DC

Mary C. Dufour, M.D., M.P.H. National Institute on Alcohol Abuse and Alcoholism National Institutes of Health Rockville, MD

Mary Fran Ernst Medical Examiner's Office St. Louis, MO

Sally Flanzer, Ph.D. National Center on Child Abuse and Neglect Washington, DC

Laurie Foudin, Ph.D. National Institute on Alcohol Abuse and Alcoholism National Institutes of Health Rockville, MD

Richard C. Froede, M.D. Forensic Pathology Committee College of American Pathologists Tucson, AZ

George A. Gay National Center for Health Statistics CDC Hyattsville, MD

Michael S. Gluck, D.Sc. Center for Devices and Radiologic Health Food and Drug Administration Rockville, MD

Joseph J. Halka, M.D. Forensic Pathologist/Medical Examiner Santa Anna, CA

Randy L. Hanzlick, M.D. National Center for Environmental Health CDC Atlanta, GA

Fern R. Hauck, M.D., M.S. Department of Family Medicine Loyola University Medical Center Maywood, IL

Brenda D. Hayes, D.S.W, M.P.H. Office of Minority Health CDC Atlanta, GA

Howard J. Hoffman, M.A. National Institute of Deafness and Other Communicable Disorders National Institutes of Health Bethesda, MD

Solomon Iyasu, M.B.B.S., M.P.H. National Center for Chronic Disease Prevention and Health Promotion CDC Atlanta, GA

Coryl LaRue Jones, Ph.D. National Institute on Drug Abuse National Institutes of Health Rockville, MD

John L. Kiely, Ph.D. National Center for Health Statistics CDC Hyattsville, MD

Michele Kiely, Dr.P.H. Health Resources and Services Administration Maternal and Child Health Bureau Rockville, MD

Robert H. Kirschner, M.D. Office of the Medical Examiner Cook County Chicago, IL

Gus H. Kolilus State Technical Assistance Team Jefferson City, MO

Chris L. Krogh, M.D., M.P.H. Indian Health Service Rapid City, SD

Henry F. Krous, M.D. Department of Pathology Childrens' Hospital San Diego, CA

Helen Lerner, R.N.C., Ed.D. National Institute of Child Health and Human Development National Institutes of Health Bethesda, MD

David W. Lloyd, J.D. National Center on Child Abuse and Neglect Washington, DC

Marian F. MacDorman, Ph.D. National Center for Health Statistics CDC Hyattsville, MD

Mary E. McClain, R.N., M.S. Association of SIDS Program Professionals Boston, MA

Patricia J. McFeeley, M.D. Office of the Medical Investigator Albuquerque, NM

Brenda G. Meister U.S. Department of Justice Washington, DC

Thomas L. Moran SIDS Alliance Columbia, MD

Ortwin A. Narr, M.A. Police Executive Research Forum Washington, DC

F. Sam Notzon, Ph.D. National Center for Health Statistics CDC Hyattsville, MD

Thomas J. O'Loughlin International Association of Chiefs of Police Alexandria, VA

Paul E. Phillips Consumer Product Safety Commission Ft. Lauderdale, FL

Ted R. Quasala Bureau of Indian Affairs Washington, DC

Brad B. Randall, M.D. Coroner/Forensic Pathologist Sioux Falls, SD

Diane L. Rowley, M.D., M.P.H. National Center for Chronic Disease Prevention and Health Promotion CDC Atlanta, GA

Kenneth C. Schoendorf, M.D., M.P.H. National Center for Health Statistics CDC Hyattsville, MD

John E. Smialek, M.D. Chief Medical Examiner Baltimore, MD

JanaLee L. Sponberg, D.A.E. U.S. Department of Defense Arlington, VA

Alfred Steinschneider, M.D., Ph.D. The American Sudden Infant Death Syndrome Institute Atlanta, GA

William Q. Sturner, M.D. American Academy of Forensic Sciences Little Rock, AR

Marie Valdes-Dapena, M.D. Department of Pathology University of Miami School of Medicine Miami, FL

Peter C. Van Dyck, M.D., M.P.H. Health Resources and Services Administration Maternal and Child Health Bureau Rockville, MD

Susan Wells American Bar Association Center on Children and the Law Chicago, IL

Marian Willinger, Ph.D. National Institute of Child Health and Human Development National Institutes of Health Bethesda, MD

Kevin J. Winn, M.D. The American Sudden Infant Death Syndrome Institute Atlanta, GA

Louise M. Wulff, Sc.D. American College of Obstetrics and Gynecology Washington, DC

The following CDC staff prepared this report:

Solomon Iyasu, M.B.B.S., M.P.H.

Diane L. Rowley, M.D., M.P.H.

Division of Reproductive Health National Center for Chronic Disease Prevention and Health Promotion

Randy L. Hanzlick, M.D.

Division of Environmental Hazards and Health Effects

National Center for Environmental Health

in collaboration with

Marian Willinger, Ph.D.

National Institute of Child Health and Human Development

National Institutes of Health

Summary

Because no uniform procedure has been developed for collecting and evaluating information on sudden, unexplained infant deaths (SUIDs) in the United States, the U.S. Senate and U.S. House of Representatives recommended in 1992 that the U.S Department of Health and Human Services Interagency Panel on Sudden Infant Death Syndrome (SIDS) establish a standard scene investigation protocol for SUIDs. Two members of the panel, the Division of Reproductive Health of CDC and the National Institute for Child Health and Human Development of the National Institutes of Health, convened a workshop in July 1993 to gather information and ideas to use in developing such a protocol. Workshop participants, who included consultants having expertise in SIDS and representatives of public and private organizations concerned with SIDS, suggested that the Interagency Panel on SIDS develop both a short-form protocol and a longer, comprehensive protocol. The participants also recommended data items to include in the short-form protocol. This report includes the short form, which was developed to standardize the investigation of SUID scenes; ensure that information pertinent to determining the cause, manner, and circumstances of an infant death is considered in each investigation; and assist researchers in accurately determining the cause of and risk factors for SIDS. It can be used by medical examiners, coroners, death investigators, and police officers. Instructions for using the protocol are also included.

INTRODUCTION

Sudden, unexplained infant deaths (SUIDs) are those for which no cause of death was obvious when the infant died. Sudden infant death syndrome (SIDS) (also known as crib death) is the most frequently determined cause of SUIDs. SIDS is "the sudden death of an infant under 1 year of age which remains unexplained after a thorough case investigation, including performance of a complete autopsy, examination of the death scene, and review of the clinical history" (1). SIDS should not be diagnosed if these criteria are not met.

Because these criteria are often not met and because practices for case investigation vary in the United States, efforts to determine the cause of and risk factors for SIDS have been hampered. The autopsy rate for SUIDs is about 90%; however, autopsy protocols vary by death investigation jurisdiction (which can consist of a county, district, or state) (2). The proportion of deaths ruled to be caused by SIDS and that include examination of the death scene is unknown, but it is probably very low because few jurisidictions have a written protocol for SUIDs scene investigation. For example, only four states (California, Minnesota, Missouri, and New Mexico) have detailed, written protocols for SUIDs scene investigation (3 6). Scene investigation protocols also differ by jurisdiction, and practices for investigating SUIDs vary among medical examiners, coroners, and others who research SUIDs (2).

Because no uniform procedure has been developed for collecting and evaluating information on SUIDs in the United States, the U.S. Senate and U.S. House of Representatives recommended in 1992 that the U.S Department of Health and Human Services Interagency Panel on SIDS establish a standard scene investigation protocol for SUIDs (7). Two members of this panel, the Division of Reproductive Health of CDC and the National Institute for Child Health and Human Development of the National Institutes of Health, convened a workshop in July 1993 to gather information and develop ideas that could be used to establish such a protocol. One recommendation from the workshop participants was to develop both a short-form protocol and a more extensive protocol. This report includes the short-form protocol developed by the Interagency Panel on SIDS and instructions for using it.

SIDS

SIDS is listed on death certificates as the cause of death for 5,000 6,000 infants (age 0 364 days) each year in the United States. The mortality rate due to SIDS has declined gradually, from a high of 1.5 per 1,000 live births in 1980 to 1.2 per 1,000 live births in 1993 (7 10), but the reason for this decline is not known. For postneonates (age 28 364 days), SIDS is the leading cause of death (accounting for about 35% of postneonatal deaths) (7,8).

The distribution of age at death is the most unique epidemiologic feature of SIDS cases (11). The risk of SIDS peaks at 2 4 months of age; SIDS is uncommon during the first month of life and after the sixth month of life. About 90% of SIDS cases occur in children under 6 months of age. In the United States, the incidence of SIDS is greater during the winter months than the summer months (11,12).

Although the etiology and pathogenesis of SIDS are unknown, increased risk for SIDS is associated with many maternal characteristics, infant characteristics, and environmental factors (12). The most consistently reported and potentially modifiable risk factors are lack of breast-feeding (11,13), exposure to tobacco smoke in utero (12 15) or during infancy (13,15), and the infant sleeping prone (12,16 18). Other factors associated with SIDS include male sex, low maternal education, young maternal age, high parity, the mother being unmarried, and late or no prenatal care (12). Some researchers have suggested that SIDS has multiple etiologies and that predisposing biochemical, anatomic, or developmental abnormalities may increase the risk of SIDS for infants (1).

A standard protocol for SUIDs scene investigation offers several potential benefits (Exhibit 1 Table_E1). For example, it may assist researchers in accurately determining the cause of and risk factors for SIDS by reducing the likelihood of incorrect identification of SIDS and by enabling or facilitating the gathering of data on deaths correctly determined to be caused by SIDS. Any SUID that has not been thoroughly investigated should be classified as undetermined or unexplained. For about 15% of SUIDs, a thorough investigation will determine or identify a cause of death other than SIDS (19).

WORKSHOP OBJECTIVES

The Interagency Panel on SIDS "Workshop on Guidelines for Scene Investigation of Sudden Unexplained Infant Deaths" was held in Rockville, Maryland, on July 12 and 13, 1993. Before the workshop, the participants (who represented federal agencies as well as public and private sector organizations) received information about SIDS, including a sample list of data items drawn from known written protocols on SUID scene investigations. During the workshop, participants discussed five topics:

1. Desirable attributes of a standard protocol for SUID scene investigation;

2. Data items of a standard protocol and which items are required or optional;

3. Training to use the protocol;

4. Procedures for data collection, reporting, and quality assurance; and

5. Strategies for implementing the protocol.

   For each of the five topics, three breakout groups were established.

Participants clarified, combined, or eliminated ideas and ranked them in order of importance. After the workshop, the organizers combined and summarized the groups' information and ideas (20).

The principal goal developed by the workshop participants was to create both a standardized short-form protocol and a standardized expanded protocol for SUID scene investigation. Participants also specified five purposes of the short-form protocol (Exhibit 2 Table_E2). Using the ideas developed in each of the five topic areas, the Interagency Panel on SIDS developed a draft, short-form protocol compatible with death investigation report forms previously published by CDC's Medical Examiner and Coroner Information Sharing Program. The draft was reviewed by panel members and selected experts who attended the workshop; the resultant Sudden Unexplained Infant Death Investigation Report Form (SUIDIRF) and accompanying instructions are available from CDC (Appendix). * Suggested modifications to the SUIDIRF will be used to develop the expanded protocol (the U.S. Model SUID Investigation Protocol), which will include specific guidelines for conducting investigations, asking the questions contained in the protocol, completing the protocol, establishing a computer data base for information gathered by using the protocol, and meeting the recommendations outlined in the workshop report (20).

USING THE SUIDIRF

All sudden and unexplained deaths among infants up to 1 year of age may be investigated by using the SUIDIRF. Local statutes define which infant deaths must be investigated, but these deaths usually include any in which the cause or circumstances of death are unknown (including deaths that are apparently due to a natural cause but cannot be confirmed by medical records, a personal physician, or a witness to the death) and any for which child abuse or neglect is suspected.

The SUIDIRF is not copyrighted and can be used with or without modification by any agency involved in investigating SUIDs. The protocol is intended for use primarily by medical examiners, coroners, death investigators, and police officers. Public health workers should ensure that local medical examiners and coroners are familiar with this report and the SUIDIRF.

Because the SUIDIRF is available in electronic form, it may be modified to meet the needs of individual investigators or agencies. For example, the data items may be rearranged, larger spaces for writing can be created, and data items may be added. To ensure uniform collection of core data items, items currently on the SUIDIRF should not be deleted or ignored. Further, these items may be important to other agencies or organizations examining trends. CDC is investigating options for computerized data entry and report generation in the SUIDIRF format.

CONCLUSION

The death scene investigation is an essential component of a thorough investigation of SUIDs. Information gathered during the scene investigation augments that obtained from an autopsy and review of the infant's clinical history. Information gathered during a SUID scene investigation can help the pathologist interpret postmortem findings and rule in or rule out accidental, environmental, and unnatural causes of deaths, including child abuse and neglect. Although the ultimate goal of a SUID scene investigation is to accurately assign a cause of death, no less important goals are identifying health threats posed by consumer products, identifying and understanding risk factors associated with SUIDs, and using the opportunity to refer families to grief counseling and support groups. These guidelines set the stage for standardized investigative procedures, data collection instruments, and training for SUID scene investigations, and they underscore the central role of medical examiners and coroners in public health surveillance and epidemiologic research of SUIDs (21).

• Copies of a standard 8.5" x 11" SUIDIRF and an optional worksheet on which the questionnaire items are written out in full may be obtained from

Centers for Disease Control and Prevention Medical Examiner and Coroner Information Sharing Program 4770 Buford Highway, N.E. Mail Stop F 35 Atlanta, GA 30341-3724 Phone: (770) 488-7060 Fax: (770) 488-7044 E-mail: MECISP1@cehdeh1.em.cdc.gov

Comments on and suggestions for improving the usefulness of the SUIDIRF are welcome and may be directed as shown above.

References

1. Willinger M, James LS, Catz C. Defining the sudden infant death syndrome (SIDS): deliberations of an expert panel convened by the National Institute of Child Health and Human Development. Pediatr Pathol 1991;11:677 84.

2. Combs DL, Parrish RG, Ing R. Death investigation in the United States and Canada, 1992. Atlanta: U.S. Department of Health and Human Services, Public Health Service, CDC, 1992.

3. Maternal and Child Health Branch. Death scene and deputy coroner investigation protocol for sudden unexpected infant deaths: instruction manual. Sacramento, CA: State of California, Department of Health Services, Maternal and Child Health Branch, 1991.

4. Division of Maternal and Child Health. Minnesota infant death investigation guidelines (for infants 0 to 24 months old): background and implementation for local investigative personnel. Minneapolis, MN: Minnesota Department of Health, Division of Maternal and Child Health, Infant Mortality Reduction Initiative, 1993.

5. Missouri Department of Social Services. Scene investigation guide for sudden, unexplained deaths of infants. Jefferson City, MO: Missouri Department of Social Services, Missouri Child Fatality Review Project, n.d.

6. Office of the Medical Investigator. SIDS/Childhood. Albuquerque, NM: State of New Mexico, Office of the Medical Investigator, n.d.

7. Kochanek KD, Hudson BL. Advance report of final mortality statistics, 1992. Hyattsville, MD: U.S. Department of Health and Human Services, Public Health Service, CDC, 1995. (Monthly vital statistics report; vol 43, no. 6, suppl).

8. CDC. Sudden infant death syndrome -- United States, 1980 1988. MMWR 1992;41(28):515 7.

9. Iyasu S, Lynberg MC, Rowley D, Saftlas AF, Atrash HK. Surveillance of postneonatal mortality, United States, 1980 1987. MMWR 1991;40(SS-2): 43 55.

10. CDC. Infant mortality -- United States, 1993. MMWR 1996;45(10):211 5.

11. CDC. Seasonality in sudden infant death syndrome -- United States, 1980 1987. MMWR 1990;39(49):891 5.

12. Hoffman HJ, Hillman LS. Epidemiology of the sudden infant death syndrome: maternal, neonatal, and postneonatal risk factors. Clin Perinatol 1992;19(4):717 37.

13. Scheondorf KC, Kiely JL. Relationship of sudden infant death syndrome to maternal smoking during and after pregnancy. Pediatrics 1992;90: 905 8.

14. Haglund B, Cnattingius S. Cigarette smoking as a risk factor for sudden infant death syndrome: a population-based study. Am J Public Health 1990;80(1):29 32.

15. Klonoff-Cohen HS, Edelstein SL, Lefkowitz ES, et al. The effect of passive smoking and tobacco exposure through breast milk on sudden infant death syndrome. JAMA 1995;273(10):795 8.

16. American Academy of Pediatrics Task Force on Infant Positioning and SIDS. Positioning and SIDS. Pediatrics 1992;89(6):1120 6.

17. Guntheroth WG, Spiers PS. Sleeping prone and the risk of sudden infant death syndrome. JAMA 1992;267(17):2359 62.

18. Dwyer T, Ponsonby A-LB, Newman NM, Gibbons LE. Prospective cohort study of prone sleeping position and sudden infant death syndrome. Lancet 1991;337:1244 7.

19. Valdes-Dapena M. The sudden infant death syndrome: pathologic findings. Clin Perinatol 1992:19(4):701 16.

20. Iyasu S, Hanzlick R, Rowley D, Willinger M. Proceedings of "Workshop on Guidelines for Scene Investigation of Sudden Unexplained Infant Deaths" -- July 12 13, 1993. J Forensic Sci 1994:39(4):1126 36.

21. Hanzlick R, Parrish RG. The role of medical examiners and coroners in public health surveillance and epidemiological research. Annu Rev Public Health 116;17:409.

Exhibit 1. Reasons for a Standard Protocol for SUID Scene Investigations
====================================================================================
 -  To generate a single, reasonable hypothesis for the cause, manner, and
    mechanism of death.

 -  To assist the pathologist, medical examiner, or coroner in ruling in or ruling
    out natural causes of death, child abuse or neglect, or injury.

 -  To identify public health threats, such as those related to consumer products
    or unsafe health practices.

 -  To contribute to the understanding of the cause of and risk factors for SIDS
    and other reasons for SUIDs and to develop preventive strategies.

 -  To use the opportunity to provide parents and caregivers information about
    grief counseling, support groups, and healthy infant-care practices.

 -  To provide information on SUIDs and SIDS to epidemiologists and agencies
    with an interest in the welfare of children.
====================================================================================

Exhibit 2. Purposes of the SUIDIRF
======================================================================================
 -  To provide a generic, short-form, model protocol for investigating SUIDs.

 -  To assist state and local death investigation jurisdictions in developing a uni-
    form, standardized, and systematic approach to investigating the scene of
    SUIDs.

 -  To ensure that all information pertinent to determining the cause, manner, and
    circumstances of an infant's death is considered in each investigation.

 -  To document the extent of investigation of a scene for SUIDs.

 -  To provide information useful to the pathologist during autopsy.
======================================================================================

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