SUID/SIDS Prevention
Responding to a Sudden, Unexpected Infant Death:Parents and families who experience the sudden, unexpected, and unexplained death of an infant are faced with an enormous sense of loss, sorrow, and confusion. Immediately after the baby's death and in the weeks and months that follow, parents, other family members, and caregivers will interact with many health and social service professionals. Some of these individuals-- police, fire, rescue squads, and emergency medical technicians--”respond to the emergency call for help. Others--”emergency room doctors and nurses, medical examiners, pathologists, and coroners--”try to find out why the baby died. Still others--”funeral directors, clergy, public health nurses, and bereavement counselors--”are there to help the parents and other family members get through the sad and difficult days that follow the death of an infant. It is not surprising that at times, having to deal with these individuals can be quite overwhelming. This fact sheet provides a brief overview of the various professionals involved when a sudden infant death occurs, as well as their responsibilities and how these professionals can help.
When a parent or caregiver finds an unresponsive baby, he or she usually phones "911" for help. Most often, the first responder is a police officer, firefighter, or other emergency medical services personnel--”sometimes all three. Whoever arrives first will examine the baby and may start cardiopulmonary resuscitation. They also examine the baby's surroundings and take notes that help in determining the cause of death. Bedding, potentially hazardous objects, medicines, formula, and other items may be collected. Depending on the community, the infant may be transported to the nearest hospital emergency department or remain at home until the medical examiner or coroner arrives.
When efforts to revive the infant are unsuccessful, emergency room staff (usually a doctor or nurse) is responsible for telling the parents and/or family members that the baby has died. Because the death is such a devastating event, nurses and/or special counselors at the hospital often provide emotional support and guidance.
In many communities, the law requires an autopsy in cases of sudden and unexpected death. Although it may be emotionally difficult for parents, an autopsy may help answer questions about what caused the baby's death. An autopsy is very important when a sudden infant death syndrome (SIDS) death is suspected because a final diagnosis cannot be made without a thorough postmortem examination.
Some ethnic and religious groups forbid autopsies. In these situations, the family may wish to talk with their clergy, spiritual leader, or a mental health counselor. These individuals may be able to help the parents and other family members reconcile the need for an autopsy with their cultural beliefs, values, and practices.
In most cases of sudden, unexpected infant death, the cause and manner of death are determined by the medical examiner or coroner for the county, district, or State where the death occurred. The autopsy is conducted or supervised by a specialist (pathologist) who reviews the medical aspects of the death. If possible, parents are notified of the preliminary autopsy results within 24 to 48 hours of the death. Once the autopsy report is available, the doctor should explain the results of the autopsy to the family, often reassuring them that the baby's death could not have been predicted.
Sudden Infant Death Syndrome 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 (Willinger et al., 1991).
Staff from the medical examiner/coroner's office or law enforcement agency will collect information about the location and circumstances at the time of the infant's death. The investigator will try to learn as much as possible about the events leading up to the death--”even at the very moment the death occurred. The investigator will interview individuals who were caring for the baby. Some typical questions that are asked include, "What time was the baby put to bed?" "Had the baby been ill recently?" "When did the baby fall asleep?" "Were the covers over the baby's head?"
Answers to these questions will help investigators find out what happened when the baby died, hopefully shedding light on the cause of death. It is very important to remember that the investigator is not trying to blame anyone for the baby's death, but is simply trying to determine how the baby died.
Coroner
A coroner is an appointed or elected public official in a particular
community, county, or region. The coroner is responsible
for making inquiries into certain types of deaths but does
not have to be a physician. The coroner verifies the cause
of death and may employ physicians, pathologists, or forensic
pathologists to perform autopsies.
Medical Examiner
A medical examiner is the physician responsible for the investigation
and examination of victims whose deaths are sudden, unexpected,
or violent. The medical examiner is expected to use his or
her medical training and expertise to evaluate the medical
history, circumstances of the death, and autopsy examination.
Pathologist
A pathologist is a physician specially trained in diagnosing
disease and determining the cause of death by laboratory
examination of body fluids, cell samples, and tissues. Usually,
the pathologist (or forensic pathologist) conducts the autopsy.
Forensic Pathologist
A forensic pathologist examines victims whose deaths are sudden,
unexpected, or violent. The forensic pathologist is an expert
in determining cause and manner of death.
Sudden, unexpected death--”especially the sudden, unexpected death of an infant--”strikes at the heart of everyone's sense of order and security. The grief and sorrow felt by the parents, other family members, friends, and other caregivers are normal responses to the death. It can take a long time for the family to regain the desire and energy to move on.
Some communities have responded to these challenges by developing an outreach program for families whose baby has died suddenly and unexpectedly. These programs provide professional case management, counseling, referral, and support services. In some locales, a community health nurse, social worker, or trained community outreach worker visits the family in their home. In some States, the program works with the medical examiner or coroner, contacting the family immediately after the death. Families can contact their local health department about these types of services in their community.
During the grieving process, a mental health professional (psychiatrist, social worker, psychologist, or grief counselor) can help the parents and family express feelings that need to be released. These professionals can answer questions and help parents cope with the changes in their lives caused by the loss of their child. Some families may seek the help of their clergy, specially trained pastoral counselors, or other spiritual guidance.
American Board of Medicolegal Death Investigators
Room 512
1402 South Grand Boulevard
St. Louis, MO 63104
Phone:(314) 268-5970
Fax: (314) 268-5695
http://www.slu.edu/organizations/abmdi
Association of SIDS and Infant Mortality
Programs (ASIP)
8280 Greensboro Drive
Suite 300
McLean, VA 22102
Phone (800) 930-7437
Fax: (703) 902-1230
http://www.ASIP1.org
The Compassionate Friends
PO Box 3696
Oak Brook, IL 60522-3696
Phone: (877) 969-0010
http://www.compassionatefriends.org
First Candle/SIDS Alliance
Suite 210
1314 Bedford Avenue
Baltimore, MD 21208
Phone: (800) 221-7437
http://www.firstcandle.org
MISS: Mothers in Sympathy and Support
PO Box 5333
Peoria, AZ 85385-5333
http://www.misschildren.org
National Association of Emergency Medical
Technicians
PO Box 1400
Clinton, MS 39060-1400
Phone: (800) 34-NAEMT
http://www.naemt.org/
National Association of Medical Examiners
430 Pryor Street SW
Atlanta, GA 30312
Phone: (404) 730-4781
Fax: (404) 730-4420
http://www.thename.org/
National Funeral Directors Association
13625 Bishop's Drive
Brookfield, WI 53005
Phone: (800) 228-6332
http://www.nfda.org/
National SIDS & Infant Death Program Support
Center (NSIDPSC)
Suite 210
1314 Bedford Avenue
Baltimore, MD 21208
Phone: (800) 221-7437
Fax: (410) 415-5093
http://www.sids-id-psc.org
National Fetal and Infant Mortality Review
Program (NFIMR)
PO Box 96920
Washington, DC 20090-6920
Phone: (202) 863-2587
Fax: (202) 484-3917
http://www.acog.org/goto/nfimr
SHARE Pregnancy and Infant Loss Support,
Inc.
National Share Office
St. Joseph Health Center
300 First Capitol Drive
St. Charles, MO 63301-2893
Phone: (800) 821-6819
Fax: (636) 947-7486
Email: [email protected]
http://www.nationalshareoffice.com
References
Association of SIDS and Infant Mortality Programs. (2001). The Unexpected Death of an Infant or Child: Standards for Services to Families. Minneapolis, MN: Association of SIDS and Infant Mortality Programs.
Arnold J, McClain ME, Shaefer SJM. (1997). "Reaching Out to the Family of a SIDS Baby." In: Woods, JR and Woods, J.L.E. (Eds), Loss During Pregnancy or the Newborn Period. Pitman, NJ: Jannetti Publications, Inc.
Centers for Disease Control and Prevention. "Guidelines for Death Scene Investigation of Sudden, Unexplained Infant Deaths: Recommendations of the Interagency Panel on Sudden Infant Death Syndrome." Morbidity and Mortality Weekly Report, 1996; 45 (No. RR-10).
Horchler J. (1994). The SIDS Survival Guide: Information and Comfort for the Grieving Family and Friends & Professionals Who Seek to Help Them. Hyattsville, MD: SIDS Educational Services.
National Association of Medical Examiners. "So, You Want to be a Medical Detective?" http://www.thename.org .
National Institute of Child Health and Human Development. (June 2001). Targeting Sudden Infant Death Syndrome (SIDS): A Strategic Plan. Rockville, MD: U.S. Department of Health and Human Services, National Institutes of Health.
Valdes-Dapena, M. "The Postmortem Examination." Pediatric Annals, July 1995; 24(7): 365-372.
Willinger M, James LS, and 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." Pediatric Pathology, September-October 1991; 11(5): 677-84.
This publication was produced by the
National SIDS/Infant Death Resource Center (NSIDRC)
8280 Greensboro Drive
Suite 300
McLean, VA 22102
The NSIDRC is funded under contract to Circle Solutions, Inc., with the Maternal and Child Health Bureau (MCHB), Health Resources and Services Administration, U.S. Department of Health and Human Services. This publication is not copyrighted; it may be reproduced in whole or in part without permission. However, in accordance with accepted publishing standards, it is requested that proper credit be given to the source(s). The views in this publication do not necessarily reflect the views of the sponsoring agency.
Health Resources and Services Administration
Maternal and Child Health Bureau
SIDS/Infant Death Program
(301) 443-2115
http://www.hrsa.gov
Rev. 2004