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 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. Pediatric Pa-thology. 1991:11:677-684]
SIDS is now looked at in the context of Sudden Unexpected Infant Deaths, a grouping made up of SIDS, Accidental Suffocation and Strangulation, and Ill-defined and Unknown Causes. All share similar risk factors described in the American Academy of Pediatrics safe infant sleep guidelines to reduce the risk of SIDS and other sleep-related infant deaths. The category of SUID was developed because of variations over time and among medical examiners in the use of the component diagnoses. By examining all three components, we can determine that a decline in SIDS rates represents a true decline rather than a shift in diagnosis.
The sudden, unexpected death of an infant to Sudden Infant Death Syndrome (SIDS) is a tragic loss. Death happens suddenly, and the family often has no time to prepare. The infant may recently have been given a clean bill of health from the pediatrician.
The death of an infant from SIDS disrupts the natural order and is a traumatic event that affects the family for the rest of their lives. The sudden, unexpected death of an infant threatens parents' safety and security and forces them to confront their own mortality. 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. The impact of SIDS is extensive and affects a myriad of people from parents, siblings and grandparents to extended family, friends, babysitters and co-workers. Families are directly helped through information and support services to alleviate their guilt and increase their understanding of this devastating event.
Parents often complain of physical symptoms such as aches, tightness in the throat, loss of appetite, insomnia and feelings of loneliness and isolation. They are often fearful of "going crazy" as they continue to hear the baby cry at night or wake to care for an infant who is no longer there.
The lack of a definitive cause of death, even after autopsy, does little to alleviate any feelings of guilt the parents may have about the death. They often blame themselves. The "if onlys" plague parents. A generally uninformed public can add to the grief and guilt of the family by voicing incorrect assumptions. The burden of grief grows in the face on these misunderstandings. Through bereavement support, families receive information, understanding, and comfort. Contact with other families who have faced such a loss also contributes to a family's efforts to cope.
Knowledge of accurate information about SIDS and other diagnoses related to sudden unexpected infant death and awareness of the needs and feelings of the surviving members of the family can do much to alleviate needless suffering. Parents want to talk about their baby. They need to talk about the events of his/her life and death, feelings related to their own grieving process, reactions of others and concerns about subsequent or surviving siblings. Immediate outreach by the SIDS Center of New Jersey helps provide answers to the family's questions and much-needed support. Through direct and electronic communication, peer support, family events and memorial services, faith-based communication, supportive activities and newsletters, the SIDS Center of New Jersey works closely with parents, grandparents, siblings and other relatives to help each address the sudden and tragic loss of their infant. A 24 hour hotline (800-545-7437) is also available so that families can reach out for help at any time. Click here for additional information about Bereavement Support.
Parent Packet A Journey to Healing