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Subject: Sudden Infant Death Syndrome (SIDS) misc.kids FAQ
Summary: Frequently Asked Questions about Sudden Infant Death Syndrome
     (Also called Cot or Crib Death)
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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 [phone].  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: [phone]
                 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.
            [e-mail]

====================================================================
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.
====================================================================