 (Also called Cot or Crib Death)



Archive-name: misc-kids/sids

Original Author: David Stokes <stokesd@nic.cerf.net> or 
<stokesd@hnc.com>
Maintainer/Modifier: Margaret D. Gibbs 


 Misc.kids Frequently Asked Questions
 Sudden Infant Death Syndrome or SIDS

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 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. 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). The peak age is
 around two to four months and the majority of the deaths
 occur during the winter months (October to April in Northern
 Hemisphere). 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.

 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 1992
 that infants be placed on the sides or on their back as this
 has some anecdotal evidence of reducing 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. Most
 parent groups (and the original FAQ author) recommend the 
 back or side placing just in case. There are several devices 
 to help keep you infant propped up but as soon as they start
 squirming a lot you probably [can]not use them.

 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 which has mainly a placebo effect on
 the parents.
 2) Predictable; There are no signs.
 3) Preventable;
 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.
 9) Colds: Many infants get their first runny nose around
 four months. A SIDS victim can die WITH a cold not FROM a
 cold.
 10) Munchausens 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)!

 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 (listed below).
 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 compare the supposed theory to the
 facts: Why the peak at about four months? Why more boys?
 Why more often during the winter?






 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
 in production.

 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 if
 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

 Researchers who need money:
 US:
 Tom Keens, Children's Hospital Los Angeles
 Sally Ward, Children's Hospital Los Angles
 Henry Krous, San Diego SIDS Research Center
(619)576-5944
 Hannah Kinney, Harvard
 Others:
 Dr. Rambaud, Paris France

 or Contact your public health officials

When you loose a parent, you loose your past.
When you loose a spouse, you loose you present.
When you loose a child, you loose your future.

 Dave Stokes, SIDS Parent to Katie who had 3 months, 27 happy days.
 stokesd@hnc.com or stokesd@cerf.net


[Dave Stokes, the original author, is no longer at the above 
addresses. If you have information regarding his new email 
address, please contact gibbsm@ll.mit.edu. Thank you.]

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Copyright 1995, 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.
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--
Margaret D. Gibbs "Practice random kindness and 
Assistant Staff senseless acts of beauty"
MIT Lincoln Laboratory Mama to Lisaan Maryla 8/21/93 - 8/23/93
 and to Annika Sophie 11/15/94

 
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