1. Introduction

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8% of survey complete.
My name is Darci and my daughter Alia passed away from Sudden Infant Death in November 2007. Through my research one of the many aspects I became frustrated with is the fact that nobody seems to be contacting SIDS parents to gather SIDS data. Yet everyday we are inundated with SIDS “risk factors” and statistics. I often wondered, as many of you, where did this data come from. I researched and could not verify why certain things were labeled “risk factors”, etc. It saddened me that no one was collecting data from parents and logging this information. I soon discovered that many other parents of SIDS babies shared my same concerns and frustrations. The only form I could find is the SUIDI (Sudden Unexplained Infant Death Initiative) form. This form is used as a guide for law enforcement on how to investigate the death of an infant. Its main purpose is to aid investigators and coroners to determine a cause of death. It would be wonderful if this information was also used to gather specific data to utilize in other ways. However, as far as I understand it is not.

It is disappointing that no one is utilizing the most precious source of information out there to help understand sudden infant death, which would be us parents. Therefore, I decided to begin my own data collecting process. My goal is to collect and categorize this data, keep running totals, and identify any commonalities. In addition I will make this data available to professional researchers or anyone I feel could put this precious data to good use. I would also make this data available to the parents completing this survey.

We never know when we will discover something that appeared insignificant, turn out to be significant. Perhaps commonalities identified could lead researchers in a direction never thought of before. As a parent that has lost a baby to sudden infant death you may be aware and frustrated with the lack of progress in sudden infant death research. Providing this questionnaire and maintaining this data is my way of attempting to make a difference. I am very curious to see if I can find any common traits from the data that is obtained. However, I am also realistic and know that nothing could come of this data. If so, at least you and I can know that we made a small effort to try and make a difference. In my mind doing nothing and not sharing our knowledge is a travesty within itself. Many people do not hold out hope in ever finding how sudden infant death happens. Unfortunately, that could be true. My hope is that someday we will understand and virtually eliminate sudden infant death. I do know that will never happen unless people such as you and I are willing to make an effort. Relying solely on researchers and doctors cannot be the only answer. Parents of SIDS babies hold valuable information. No one else could be more knowledgeable about our babies, pregnancy and family history. I hope that you decide to join me in this quest and begin by completing the SIDS/SUID Data survey.
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.
*It is imperative that accurate and honest answers are provided by our participants. If you are not comfortable providing identifiable and/or contact information you have the option to remain anonymous when completing this form. This is to create a comfortable worry free environment. I do not want to encourage dishonest answers for fear of being identified. I would rather have participants remain honest and unidentifiable than dishonest and identifiable.

* The most important aspect I would like to stress is answering these questions to the best of your ability with honest and accurate answers. It is expected that you may not know precise information for each question. For example, if a question asks for your baby’s weight before s/he died, stating that your baby weighed approximately 10-13 pounds is fine. You do not have to indicate your baby’s exact weight down to the pound including ounces. Most questions have the option to answer as “unsure”. You can also skip a question if you choose. We ask that you please refrain from using the “unsure” option frequently. Our goal is to collect accurate data and information not to have numerous unanswered questions. If we end up with little useful information and a lot of “unsure’s” then this questionnaire would prove to be useless. Feel free to use “unsure” when necessary but do not use this simply because you do not want to commit to an answer.

*If you are completing this survey in written form and not online, please return this survey to the following address:

SIDS Survey
c/o Naylen’s Hope
PO Box 5134
Asheboro, NC 27204

*If you are in possession of a hard copy of this survey and know SIDS/SUID parents that may be interested in completing this survey, you are allowed to photocopy and distribute hard copies of this survey to SIDS/SUID parents

* There will be questions that will bring up difficult memories and various emotions. I would advise that if this form is too difficult for you to complete than stop. You are not obligated to complete this form. Remember this questionnaire is VOLUNTARY.

*This form has many questions. It may be difficult to complete this form in one sitting. One option is to print this questionnaire and complete it at your own pace, then log back on and fill in your answers. If you cannot complete the questionnaire in one sitting you have the option to save your answers and return to your questionnaire at a later time.

* Some of the questions may seem irrelevant or you may wonder why a question in particular has been asked. As stated previously, we never know when something is relevant. Be confidant that there is a reason for asking each and every question on this form. Some questions are meant to directly address some of the stereotypes and assumptions surrounding SIDS babies and SIDS families. Other questions correlate with stated “risk factors” and various theories about SIDS/SUID. There is no right answer. Only honest and accurate answers are desired.

* There are many questions where a simple “yes” or “no” is appropriate. Other questions are multiple choice. Some questions will indicate that you are allowed to put more than one answer if necessary.

* All of the questions on this questionnaire are in reference to your child that died of SIDS/SUID unless otherwise stated.

* You are allowed to skip a question if you choose to do so. If a question does not pertian to you and your baby's situation and a "not applicable" answer is not available, simply skip the question. You are also allowed to skip an entire section if you choose to do so. You can still submit the completed portions along with the omitted areas

Finally, I thank you so much for taking the time to complete this survey. This information is personal and private and I appreciate that you are willing to share your information. My hope is that together we can make a positive difference in the fight against sudden infant death.
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