Grief Support for Family
WHAT IS SIDS?
Sudden Infant Death Syndrome (SIDS) is the "sudden death of an infant under one 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).
What Are the Most Common Characteristics of SIDS?
Most researchers now believe babies who die of SIDS are born with one or more conditions that make them especially vulnerable to stresses that occur in the normal life of
an infant, including both internal and external influences. SIDS occurs in all types of families and is largely indifferent to race or socioeconomic level. SIDS is unexpected,
usually occurring in otherwise apparently healthy infants from 1 month to 1 year of age. Most deaths from SIDS occur by the end of the sixth month, with the greatest number
taking place between 2 and 4 months of age. A SIDS death occurs quickly and is often associated with sleep, with no signs of suffering, . More deaths are reported in the fall
and winter (in both the Northern and Southern Hemispheres) and there is a 60- to 40-percent male-to-female ratio. A death is diagnosed as SIDS only after all other
alternatives have been eliminated: SIDS is a diagnosis of exclusion.
What Are Risk Factors for SIDS?
Risk factors are those environmental and behavioral influences that can provoke ill health. Any risk factor may be a clue to finding the cause of a disease, but risk factors in
and of themselves are not causes.
Researchers now know the mother's health and behavior during her pregnancy, and the baby's health before birth, seem to influence the occurrence of SIDS, but these
variables are not reliable in predicting how, when, why, or if SIDS will occur. Maternal risk factors include cigarette smoking during pregnancy, maternal age less than 20
years, poor prenatal care, low weight gain, anemia, use of illegal drugs, and history of sexually-transmitted disease or urinary tract infection. These factors, which often may
be subtle and undetected, suggest SIDS is somehow associated with a harmful prenatal environment.
How Many Babies Die From SIDS?
For about 10 years, from 1983-1992, the average number of SIDS deaths reported annually ranged from 5,000 to 6,000. Beginning in 1992, this number began to change.
In the past few years, especially in the mid 1990's, the number of SIDS deaths has declined significantly resulting form the message of the Back To Sleep campaign. The
National Center for Health Statistics (NCHS) reported, in 1997, in the United States, 2,991 infants under 1 year of age died from SIDS; down from 3,050 in 1996. Preliminary
figures show that, in 1998, 2,529 infants died from SIDS. (NCHS, Telephone interview, July 2000.)
The rate for Sudden Infant Death Syndrome dropped by an estimated 20.9 percent from 1999. Four hundred and ninety-seven fewer infant death occurred in 2000 due to
SIDS. Based upon the preliminary 2000 data, 2,151 babies died of SIDS, at a rate of .529 per 1,000 live births.
How Do Professionals Account for the Significant Recent Decline in SIDS Deaths?
According to most professionals, the significant decline in SIDS deaths starting in the mid-1990's can be attributed to results achieved from health messages promoted in the
public health campaign known as the "BACK TO SLEEP CAMPAIGN" (BTS).
In April 1992, the American Academy of Pediatrics, Task Force on Infant Sleep Position (AAP), issued a statement recommending infants be placed on their backs to sleep
to reduce the risk of SIDS. In 1994, in response to the 1992 AAP announcement, a national campaign was initiated. This campaign was a joint effort of the U.S. Public Health
Service (National Institute of Child Health and Human Development and the Maternal and Child Health Bureau), the AAP, the SIDS Alliance, and the Association of SIDS and
Infant Mortality Programs. Public service announcements from both government and private sectors were circulated. Largely as a result of public awareness raised by BTS
Campaign messages, the number of SIDS deaths declined by more than 40% between 1992 and 1997. (Pediatrics, March, 2000, p.650.)
The BTS Campaign expanded to become a nationwide public health effort. Major responsibility for disseminating information and educational materials on this crucial health
topic was assigned to the National Institute of Child Health and Human Development (NICHD). NICHD adopted the following recommendations to implement this nationwide
effort to increase awareness of the critical importance of infant sleep position as a risk factor for SIDS:
• Preparation and dissemination of several publications on infant care practices targeted at both consumer and health professional audiences;
• Establishment of a toll-free hotline as a contact point for obtaining these publications; and
• Design of a web page with current information about activities of and resources available from the BTS Program.
How Do Professionals Diagnose SIDS?
Often the cause of an infant death can be determined only through a process of collecting information, conducting sometimes complex forensic tests and procedures, and
talking with parents and physicians. When a death is sudden and unexplained, investigators, including medical examiners and coroners, use the special expertise of forensic
medicine (application of medical knowledge to legal issues). SIDS is no exception.
Health professionals make use of three avenues of investigation in determining a SIDS death:
(1) The autopsy,
(2) Death scene investigation, and,
(3) Review of victim and family case history.
The Autopsy
The autopsy provides anatomical evidence through microscopic examination of tissue samples and vital organs. An autopsy is important because SIDS is a diagnosis of
exclusion. A definitive diagnosis cannot be made without a thorough postmortem examination that fails to point to any other possible cause of death. Also, if a cause of SIDS
is ever to be uncovered, scientists will most likely detect that cause through evidence gathered from a thorough pathological examination.
A Thorough Death Scene Investigation
A thorough death scene investigation involves interviewing the parents, other caregivers, and family members; collecting items from the death scene; and evaluating that
information. Although painful for the family, a detailed scene investigation may shed light on the cause, sometimes revealing a recognizable and possibly preventable cause
of death.
Review of the Victim and Family Case History
A comprehensive history of the infant and family is especially critical to determine a SIDS death. Often, a careful review of documented and anecdotal information about the
victim's or family's history of previous illnesses, accidents, or behaviors may further corroborate what is detected in the autopsy or death scene investigation.
Investigators should be sensitive and understand the family may view this process as an intrusion, even a violation of their grief. It should be noted, although stressful, a
careful investigation that reveals no preventable cause of death may actually be a means of giving solace to a grieving family.
What SIDS Is and What SIDS Is Not
SIDS Is:
• The major cause of death in infants from 1 month to 1 year of age, with most deaths occurring between 2 and 4 months
• Sudden and silent--the infant was seemingly healthy
• Currently, unpredictable and unpreventable
• A death that occurs quickly, often associated with sleep and with no signs of suffering
• Determined only after an autopsy, an examination of the death scene, and a review of the clinical history
• Designated as a diagnosis of exclusion
• A recognized medical disorder listed in the International Classification of Diseases, 9th Revision (ICD-9)
• An infant death that leaves unanswered questions, causing intense grief for parents and families
SIDS Is Not:
• Caused by vomiting and choking, or minor illnesses such as colds or infections
• Caused by the diphtheria, pertussis, tetanus (DPT) vaccines, or other immunizations
• Contagious
• Child abuse
• The cause of every unexpected infant death
Any sudden, unexpected death threatens one's sense of safety and security. We are forced to confront our own mortality (Corr, 1991). This is particularly true in a sudden
infant death. Quite simply, babies are not supposed to die. Because the death of an infant is a disruption of the natural order, it is traumatic for parents, family, and friends.
The lack of a discernible cause, the suddenness of the tragedy, and the involvement of the legal system make a SIDS death especially difficult, leaving a great sense of loss
and a need for understanding.