INSTRUCTIONS ON HOW TO COMPLETE THE SIDS/SUID DATA SURVEY
* This questionnaire is to be completed by either the mother or father of a baby that has died suddenly and unexpectedly. This is often referred to as Sudden Infant Death Syndrome, Sudden Unexplained Infant Death, Cribdeath and Cotdeath. SIDS/SUID is the sudden death of an infant under one year of age that remains UNEXPLAINED after a thorough investigation and autopsy has been completed. Basically it is a diagnosis of "exclusion". All efforts to explain the death have been exhausted and a "cause" is still not identified.
In the United States the term Sudden Unexplained Death in Infancy or Sudden Unexpected Infant Death and other similar terms are replacing the term Sudden Infant Death Syndrome on death certificates. Unfortunately, there are many medical examiners and coroners that simply refuse to list SIDS/SUID on a death certificate. This is true even when a cause of death has not been identified. On the other hand it is not unheard of for a cause to be listed, such as pneumonia, even though there was no infection present. In other cases there is something detected during the autopsy but what was detected is not enough to cause death. Nevertheless, it will be cited as the cause of death. Many common alternative causes listed on death certificates are Undetermined, Unknown, Pneumonia, Overlay, Hypoxia, and Apnea to name a few. Therefore, if your baby’s death certificate DOES NOT list SIDS/SUID/Unknown as the cause of death, YOU CAN STILL COMPLETE THIS SURVEY if you feel this diagnosis is NOT ACCURATE. We are not stating that all death certificates with the above stated alternative causes are incorrect. However if one of the above causes is listed on your baby’s death certificate and you feel this diagnosis may not be accurate you are encouraged to complete this questionnaire. My daughter's death certificate states "Apnea" as her primary diagnosis. Partly due to the above stated issues I am not comfortable with this diagnosis and very much feel her death qualifies as "SIDS".
HOWEVER~ If your baby's cause of death is listed as pneumonia, overlay, hypoxia, or apnea and you are confident that this diagnosis is accurate PLEASE DO NOT COMPLETE THIS SURVEY. This survey is to try and discover commonalities to an "UNKNOWN" cause of death (SIDS). For example, if pneumonia was listed on the death certificate and you believe this diagnosis is accurate your baby's cause of death is not "unknown".
* It is important that we collect accurate information. In order to complete this questionnaire you must have knowledge of the baby’s family history, the mother’s pregnancy and intimate knowledge of the baby. For this reason well intended friends, acquaintances and extended family members should NOT complete this form.
* Prior to completing the data gathering portion of this form, personal information is requested. This includes, among other things, your name and contact information. You will not receive unsolicited contact unless you give permission to do so. However, contact and any identifiable information is not required in order to complete this questionnaire. Identifying information is collected for several reasons. For instance, there may be questions or further clarification needed regarding your answers. This data may be shared with a researcher or other persons in the medical field. They may have an interest in contacting you for further information or other research projects, etc.
I speculate that in order for the medical community to take this data seriously, having hundreds of “anonymous” people completing a questionnaire may not be appealing. In order for this data to appear reliable and valuable they may want to know where and whom this data is coming from. Having identifiable information along with your answers will provide a sense of reassurance for researchers, etc.