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Subject: Sudden Infant Death Syndrome (SIDS) misc.kids FAQ

This article was archived around: 31 Oct 2002 11:28:45 GMT

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Archive-name: misc-kids/sids Posting-Frequency: monthly Last-modified: 1997/02/14 Version: 2.11
Original Author: David Stokes Maintainer/Modifier: Margaret D. Gibbs Misc.kids Frequently Asked Questions Sudden Infant Death Syndrome or SIDS ===================================================================== This FAQ is not by any means meant to be a definitive work on SIDS. If you are interested in writing such a document, feel free to do so on your own. In the same vein, the current maintainer will respond to any email on the subject with a form letter, letting you know how you can become the new maintainer of this FAQ. More detailed and up-to-date information on SIDS is available for those who have WWW access. The URL for "SIDS Network, Inc." is http://sids-network.org. For a list of other FAQ topics, tune in to misc.kids.info, and/or look for the FAQ File Index posted to misc.kids weekly ===================================================================== SIDS - Sudden Infant Death Syndrome SIDS is the death of an apparently healthy infant that remains unexplained after a thorough autopsy and death scene investigation. There appears to be no suffering in most cases; death occurs very rapidly, usually during sleep. SIDS is the leading killer of infants between one week and one year with an approximate rate of two per thousand live births (1 in 500). 6000-7000 babies die of SIDS every year in the US. The peak age is around two to four months and the majority of the deaths occur during the winter months (October to April in the Northern Hemisphere). Researchers believe that SIDS probably has more than one cause, although the final process appears to be similar in most cases. SIDS can not predicted, prevented, or reversed. Risk Factors: Note: Most babies with all the risk factors LIVE and babies with no risk factors do die of SIDS. In most cases a risk factor increases the odds from 2/1000 to 2/998. Also, there is _no_ "non-risk" factor which anyone can point to and say "no SIDS babies did/had this". The major risk factors are: 1. Maternal Smoking 2. Poor prenatal care 3. Low birth weight 4. Hard drug use 5. Young maternal age. Oddly the majority of the deaths occur during winter months, males more commonly the victim, and the second child is more susceptible than the first. The average age of a SIDS victim is about four months. Things to do with your infant: The American Association of Pediatrics recommended in 1997 that infants be placed on their back, as studies have shown this has reduced the rate of SIDS in some areas. Death from aspiration of vomit is much rarer than SIDS. Not all doctors are convinced, and babies have died of SIDS while sleeping on their side or back. There are a few exceptions for the back recommendation: if the baby has reflux, or certain upper airway malformations such as Robin Syndrome. Also, these recommendations are for infants during sleep. While the infant is awake and observed, some "tummy time" is necessary for developmental reasons. Side sleeping is less risky than stomach sleeping, and there are several devices to help keep you infant propped up, but as soon as they start squirming a lot you probably cannot use them. Constant worrying about the possibility of SIDS and constant checking on the baby will not safeguard a child from SIDS. It will only serve to exhaust the parents and to increase their worries. The first few months (and beyond!) is a time best spent by enjoying, loving, and watching your child grow and develop. Recognize the fact that you are not alone in your concern for your child. And remember that SIDS is not a common occurrence - of every 1000 babies born, 998 infants will NOT become SIDS victims. SIDS is NOT: 1) Apnea (breathing stops); Many people have apnea and apnea has killed infants. Infants with apnea can be resuscitated. An apnea monitor (AKA cot monitor) can detect when a SIDS victim stops breathing - but remember, a SIDS victim is already dead when that happens. Note: Infants with apnea usually are placed on apnea monitors for apnea, not to prevent the unpreventable. And many SIDS parents do use apnea monitors on subsequent children - this has mainly a placebo effect on the parents. 2) Predictable; There are no signs. 3) Preventable; Some people think that if you do one thing or another (such as breastfeeding, co-sleeping, or laying baby on its back, etc), you can prevent SIDS. While doing these things may lessen the odds of SIDS, there _are_ SIDS victims who were exclusively breastfed, and slept (placed on their back or side) with their parents. There is no known factor which will prevent SIDS. 4) a near-SIDS; SIDS, by the definition, can not be a near or almost. Apparent Life Threatening Events (ALTE) is the proper term for these types of problems and this a new area of pediatrics research. But an almost SIDS is like an almost pregnancy -> impossible. 5) Infant botulism: Infant botulism and SIDS have a similar age of death demographics but the botulism is easily found in an autopsy. 6) Caused by immunizations: Most children get their immunizations at about four months which coincides with the average age. But children without immunizations also die of SIDS. 7) Caused by poor/bad/stupid parents: SIDS happens to parents of all economic, social, educational, and racial groups. Some cultures do not report SIDS deaths or have no way to classify SIDS and this often leads some to say that there are no SIDS deaths in country X. 8) Caused by Colds: Many infants get their first runny nose around four months. A SIDS victim can die WITH a cold but not FROM a cold. 9) Munchausen by Proxy: Despite the flippant remarks by ABC Television 'reporter' John Stossel, SIDS is not Munchausen (Where a parent harms their child so the parents get attention from doctors treating the child)! 10) Caused by fire retardents in mattresses (The "Peter Cook" theory has been debunked) 11) Caused by suffocation; 12) Caused by vomiting or choking; 13) Contagious; 14) Hereditary; 15) The result of neglected illness, accidents, or abuse. SIDS is NOT anyone's fault. Autopsy and Death Scene Protocols: California was the first state to have a comprehensive autopsy and death scene protocol for SIDS victims. This came from work by State Senator Boatwright (D-Concord) and now many other states are developing their own protocols. The protocols have two main purposes: 1) the gathering of data for future research and 2) the collection of small tissue samples to provide materials for researchers. Previously it was extremely hard if not impossible to be able to study SIDS victims to find any clues on the syndrome. Some parents object to the autopsy on religious or personal issues, which is their right. But many parents later find that they wish they knew more about the death of their child. If your child dies of SIDS, you can request a copy of the autopsy (or ask your pediatrician to make the request) and have a doctor review it with you. If your state does not have such protocols, contact your elective representatives and Dr. Henry Krous of the San Diego SIDS Research Center (619)576-5944. Dr. Krous is a leading proponent of these protocols, is willing to work with politicians, and has done a lot of the work on the California and Arizona protocols. Old Wives Tales: Many old wives tales, superstitions, and just plain stupidity abound about SIDS. From chiropractors claiming 'stress on the atlas while transversing the birth canal' to stories about suffocation from the ammonia in urine, SIDS has suffered from the ignorant. When confronted by a self-appointed expert, be sure to compare the supposed theory to the facts: Why the peak at about four months? Why more boys? Why more often during the winter? Articles and reports about SIDS often appear in the news media. Periodically such reports imply that "the cause" has been discovered. It is important to restate that SIDS continues to be an unsolved problem. Even with current scientific knowledge, SIDS victims cannot be identified beforehand. Good Book: 'When the Bough Breaks' by Peter Davis and David Delgadillo. This book is a compilation of information and stories from doctors, SIDS parents, families, and siblings. Available from San Diego Guild for Infant Survival $10. Volume 2 is now available. What to say to SIDS parents: Most people are uncomfortable with death, especially when it deals with an infant. Many people say stupid things to parents like 'You can always have another', 'It was the will of God', or something else that does not help the parent. Just say you're sorry for their loss, and if you want to do more ASK what you can do. If you can help with funeral arangements, returning clothes, driving to support meetings, and just handing over wads of tissue as needed, you are helping. If you can't help, keep in touch but don't stick around. Time takes the edge of the frequency of the pain away but the death of the child will always be a raw nerve. It does help to ask questions like 'what type of baby was he?' or 'can you show me some pictures of her?'. The SIDS parent is often in a haze after the death, but they do remember the little things. Who to Contact for Information: SIDS Alliance: (800) 221-SIDS San Diego Guild for Infant Survival: (619) 222-9662 California SIDS program: (800) 369-SIDS SIDS Massachusetts Center: (617) 534-SIDS or Contact your public health officials When you lose a parent, you lose your past. When you lose a spouse, you lose your present. When you lose a child, you lose your future. Dave Stokes, SIDS Parent to Katie who had 3 months, 27 happy days. stokesd@cerf.net ==================================================================== Copyright 1995-1998, Margaret Gibbs. Use and copying of this information are permitted as long as (1) no fees or compensation are charged for use, copies or access to this information, and (2) this copyright notice is included intact. ====================================================================