|The Sudden Infant Death Syndrome Alliance||1314 Bedford Avenue
Baltimore, MD 21208
TO: SIDS Alliance Board of Directors and Affiliates
FROM: Phipps Cohe, National Public Affairs Director
RE: SIDS ALLIANCE PUSHES FOR STATES TO PASS STANDARDIZED AUTOPSY AND DEATH SCENE PROTOCOLS FOR CASES OF SUDDEN, UNEXPECTED INFANT DEATH
Over the past twenty-five years, over 100,000 families in the U.S. have had an infant die suddenly and unexpectedly of Sudden Infant Death Syndrome, or SIDS. By medical definition, the term SIDS is a postmortem diagnosis affixed when no known or possible cause for an infant's death can be found following a thorough autopsy, death scene investigation and review of the medical history. Currently, however, only about 1/2 of the states (24) have child specific autopsy and death scene mandates, the terms of which vary from state to state. Among those pending are New York and Pennsylvania, the locations of two highly sensational, decades-old cases which have recently been reopened. Broader, standardized implementation of autopsy and death scene mandates are crucial to efforts to differentiate cases of SIDS from cases of child abuse, and to expand our medical knowledge about SIDS.
At the behest of the SIDS Alliance, Congress recommended that the U.S. Department of Health and Human Services Interagency Panel on Sudden Infant Death Syndrome establish standardized death scene investigation protocols for all cases of sudden infant deaths. In June 1996, the Centers for Disease Control and Prevention and the National Institute of Child Health and Human Development issued guidelines for investigating sudden, unexplained infant deaths. The guidelines, intended for use by coroners, medical examiners, and police officers, were developed to standardize the process of examining such deaths; to ensure that information pertinent to the cause, manner, and circumstances of an infant's death are considered; and to assist researchers in their search for the causes and risk factors for SIDS.
Although the protocol has been created, it has only been implemented in a few locations. This protocol cannot be mandated nationwide but must take place on a voluntary state by state or locality by locality basis. We call upon state legislatures -- particularly those like New York and Pennsylvania -- to utilize heightened public awareness of these issues, to adopt the guidelines and efforts that require autopsies for all cases of sudden and unexplained infant deaths. Utilization of this protocol ensures that cases of abuse are appropriately identified. It also eliminates situations of mistaken suspicion, accusations, and sometimes prosecution of innocent parents and care-givers.
Typically, a family experiences a single SIDS death. In addition, the medical
literature reports several well-documented cases of twin SIDS. Investigations of cases
involving multiple deaths of infants within a family must first rule out recently
uncovered environmental toxins (such as stachybotrus atra) as well as genetic and
metabolic disorders. Newly identified disorders such as MCAD and carnitine deficiency run
in families and can cause multiple cases of sudden death unless treated. Tests for these
disorders have only recently become available, but are rarely administered. They are
essential before an assumption of wrong-doing is made. While cases of abuse misdiagnosed
as SIDS have garnered the media spotlight, it is actually far more common for the families
or care givers of SIDS victims to be unjustly accused or suspected of wrong-doing.
Broader, standardized implementation of autopsy and death scene mandates for SIDS cases
would go a long way toward providing for more competent, compassionate management of these
highly sensitive cases.
Recognized as a medical disorder since 1969, SIDS has only recently been linked scientifically to a neurochemical defect in the brainstem of many SIDS victims. This is the first bonafide clue as to what may be causing SIDS to occur in some infants. Research from around the world has also demonstrated increased risk for SIDS among babies who sleep tummy-down. Avoidance of this risk factor has provided the first intervention for SIDS through the "Back To Sleep" campaign. The "Back To Sleep" campaign has been credited with reducing U.S. SIDS rates by nearly 40%--the equivalent of sparing the lives of nearly 2,000 infants a year. Vital statistics for SIDS in the U.S. now hover at about 3,000 or 0.74 SIDS deaths per 1,000 live births.
When reporting on cases involving multiple infant deaths, it is important to keep in perspective the fact that despite all of the recent attention and concern, only a handful of cases --most of which are 25 years old or older -- have been found in retrospect to involve foul-play. The vast majority of SIDS cases today are bonafide and, according to the American Academy of Pediatrics, are accurate postmortem diagnoses 95% to 98% of the time. The implementation of standardized death investigation and mandatory autopsy for all sudden and unexplained infant deaths should increase the degree of accuracy even further.
HERE ARE 10 REASONS WHY STANDARDIZED SUDDEN UNEXPECTED DEATH
AUTOPSY AND DEATH INVESTIGATION PROTOCOLS ARE SO IMPORTANT
1. To ensure comprehensive postmortem examinations in infants who die suddenly and unexpectedly.
2. To provide findings to correlate with the decedent's medical history.
3. To provide findings to correlate with the death scene investigation (the other critical component in the identification of a cause of death).
4. To develop documentation which justifies the autopsy diagnoses.
5. To establish accurate causes of death.
6. To develop accurate vital statistics, information and records.
7. To assist in prioritizing the allocation of health care resources.
8. To provide a database for research and education.
9. To fulfill criteria to make a diagnosis of Sudden Infant Death Syndrome (SIDS).
10. To allow comparison of SIDS and sudden unexpected death cases in different locales.
This list was developed by Henry F. Krous, MD, Director of Pathology at Children's Hospital of San Diego, and Barry Brokaw, President of the California lobbying firm Sacramento Advocates, Inc. Dr. Krous is Vice Chairman of the California SIDS Advisory Council, a principal drafter of California's SIDS Autopsy Protocol law, and is Chairman of the SIDS International Autopsy Protocol Committee. Barry Brokaw is a SIDS parent and a member of the Board of Directors of the SIDS Alliance. He developed the package of SIDS laws adopted by California in 1989.
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