SUID, SUD, SUDI, SDII Undetermined,
Cause Unknown... HELP!!!!
My baby’s death certificate indicates
cause of death as undetermined. Is this SIDS? Why isn’t it being called SIDS?
Fewer and fewer medical examiners and coroners are using SIDS (Sudden Infant Death Syndrome) as a cause of death. While the definition of SIDS is: "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," the word "syndrome" incorrectly implies a diagnoses or illness, when it is in fact a diagnosis of exclusion. There are no clinically significant findings that indicate cause of death.
Five years ago, your baby’s cause of death probably would have been ruled SIDS. The fact that there is no national standard for terminology for these types of infant deaths AND that medical examiners/ coroners are increasingly reluctant to use SIDS as a cause of death has led to parental and bureaucratic confusion. The CDC’s National Center for Health Statistics lists ALL of the following as definitions of SIDS for coding purposes:
- Sudden Death in Infancy or SDII
- Sudden Infant Death or SID
- Sudden Unexplained Death or SUD
- Sudden Unexplained (unexpected) Death in Infancy or SUDI
- Sudden Unexplained Infant Death or SUID
- Sudden plus (Unexpected) or (Unattended) or (Unexplained)
- Death plus (Cause Unknown) or (in Infancy) or (Syndrome)
- Infant Death plus (Syndrome)
- Presumed SIDS, Probably SIDS, Consistent with SIDS
In addition, anecdotally we know infant death certificates have also ruled: "Cause unknown with the contributing factor of co-sleeping" and "Undetermined but cannot rule out suffocation from unsafe sleeping environment," and other variations on this theme.
Parents should also be aware that when no autopsy is performed—for whatever reason: personal/ religious beliefs or your area doesn’t have the staff/funding—or there is not a thorough death scene investigation, in all likelihood SIDS will not be ruled as the cause of death. We know these changes are difficult for parents who identify as "SIDS parents. To hear that the term SIDS as a cause of death is sun setting is upsetting. We also know that parents whose baby’s death certificate says SUID or Undetermined don’t necessarily identify as SIDS parents.
The CJ Foundation is here to help all parents who experience a sudden, unexpected death of an infant. We are an authoritative source of information on the latest in research findings and a leader in advocacy efforts in Washington. Whether you need a bereavement kit, help finding support services or assistance requesting an autopsy report. We are here for you; you are not alone. Call or email us today.