What is SIDS?

I wish I didn't know as much as I do and still, I know next to nothing.  There are so many theories and precautions and yet, there are always exceptions to the rules.  What I know is this - SIDS (Sudden Infant Death Syndrome) is the label given to the death of a seemingly very healthy baby who stops breathing, who shows no signs of any other disease or suffocation, and for whom there is no explanation for their death.  Looking at SIDS in this way, it is a death for which every possible explanation has been ruled out.  However, there are certain things that we know happen - a healthy baby, is asleep or at rest, they are unable to take a breath, and they cannot be resuscitated.  These factors have made researchers take pause and think that there must be something there.  While they have not come up with the explanation, there are those who believe there is something that is happening, illustrated by these specific factors, that point to there being a real cause and effect.  From what I have learned, the leading SIDS expert in the country is a woman named Dr. Hannah Kinney at Children's Hospital in Boston.  Her research has been in defining the cause of SIDS and the hypothesis which she has been testing is a brain stem abnormality in babies that affects their ability to regulate their sleeping and breathing patterns.  Now, I can't tell you much more than that except that somehow serotonin uptake in the brain is affected by the abnormality.  The baby is unable to identify high carbon dioxide levels and low oxygen levels and therefore change their position to get more air.  This is also, by the way, why Maxie is considered old for this to have happened and why it is most common in babies under 4 months.  Older babies can change their sleep positions easier than newborns.  In most cases the sleep conditions of the baby who dies contribute to the high carbon dioxide and low oxygen levels, which is why the American Pediatric Association recommends not putting babies in their cribs on their tummies, with blankets, bumpers, stuffed animals, or anything else (boppy pillows, sleep positioners, etc...) and also to keep a fan on in the room to keep air circulating.  Dr. Kinney truly believes that it is possible that the cause of SIDS can be found and that with that, a potential test for the abnormality would be identified, along with a potential cure.  Her research is being funding by private dollars in addition to National Institute of Health grants and other sources.  After we complete Maxie's forest (25k to go!), we will be raising money for Dr. Kinney's research.

There are other theories as well however.  Since 1997, the New Zealand government has been endorsing a national "mattress wrapping" campaign.  Dr. Jim Sprott's research has concluded that the issue lies in the baby's crib mattress.  The chemicals contained within the mattress grow a fungus that becomes toxic to babies.  (You can read more here: http://www.pnc.com.au/~cafmr/sprott/).  He has developed a specific way of wrapping the mattress, which apparently has been so successful that not a single baby has died on a wrapped mattress yet.  100% success rate.  Why aren't all governments encouraging mattress wrapping?  Dr. Sprott wrote a book called "Cot Death Cover Up" which basically points to a conspiracy theory with the SIDS research institutes, the governments, and the manufacturers of baby mattresses.  I am not one for conspiracy theories (even if I do like psychics and mediums), but 100% success rate has me sold.  All Leviss rainbow babies will be sleeping on wrapped mattresses.  Of course, Dr. Sprott's theory does not explain the woman whose baby died while she was nursing him or the one who died while in his mommy's sling and I have lots of other examples of exceptions to the "baby died in the crib" rule.

So, what do parents do about their babies or future babies?  I guess they pray.  They try to have faith that their baby will not be one of the few unlucky ones to have been born with this brain stem abnormality.  They will never know until their baby becomes one of the unlucky ones (like Max) because there is no test anyway.  You can follow all of the APA guidelines.  I know lots of parents who have told me that their babies just sleep more soundly on their tummies so they just put them down that way anyway.  I would obviously not take that risk, and didn't take it with Max.  I would suggest that parents make sure that their babysitters, nannies, parents (grandparents) and daycares are following the rules too.  Being liked by the nanny isn't worth not insisting that the guidelines are followed.  Your baby's life is most important.  I would wrap my mattress.  In the worst case, a wrapped mattress can't hurt.  You won't know if your baby has this issue so make sure that the oxygen is circulating wherever they are, keep a fan on low in the baby's room.  I have even seen guidelines that suggest using an air purifier.  I know that with our next baby we will also use our Babysense monitor that Gigi bought us for Max in addition to a snuza baby monitor.  The Babysense monitors movement under the crib mattress http://www.babysense.net/.  The Snuza clips right on to the diaper and monitors breathing and movement there http://www.snuza.info/.   Maybe at least this will help us sleep.  We will take a CPR class and probably retake every few years.  The truth is though that even if the baby stops breathing, if it is a true SIDS case, we won't be able to resuscitate him/her anyway.  Still, I know this can never happen to us again.

Losing Max has changed the entire course of our lives.  It has made a previously safe world terrifying.  It has forced us to take a step back from friendships that weren't very deep or were somewhat one sided because we don't have the energy right now for anything that isn't real or for people who don't truly care about us.  It has made us feel alone.  It has 100% forced us to question our faith and whether our community is even the right fit for us in some ways.  It has empowered me to bring up the elephant in the room (my son!), even when people have been clear that they don't want to talk about him.  It has inspired me to want to share the beauty of his soul with you, so that you can know him the way we knew him.  It has crushed our hearts into a million pieces.  With everything that I am, I will do my best to ensure this never happens to us again or to any other family that I can affect.  That is the most I can hope for at this stage.


Peter Howard said...

I'm really big on researching SIDS as well, but sometimes the research itself can be misleading. I've read a lot about the New Zealand thing but in the pro-mattress-wrapping research they usually fail to mention that the coding has changed for the country so while there are fewer SIDS deaths there are actually more SUID deaths than in any other westernized country. My son didn't die on a crib or on a mattress at all.

We bought a Snuza with our rainbow baby and it has helped a lot. We figure that even a false sense of security is better than no sense of security at all.

Akthomson said...

Thank you for sharing your inmost feelings and your most beautiful son who was so sadly and tragically taken from you. What a precious, precious boy. I pray for a safe delivery for new baby.