Tuesday, January 10, 2012

Sacred Cows/ SIDS

Today I am going to address some sacred cows, and it may anger you, but this is life as I see it.

1) SIDS is always preventable.

Society presents every death as preventable. They aren't. This is something to give comfort and keep bubbles of peace intact. Parents have lost babies while they were sitting upright holding them, in cribs devoid of blankets or bumpers. Some of the advice presented hasn't even held up under research.

This also feeds into the perception by some that unexpected infant deaths are murder. Not true. The public clings to the one story because then they can lie and say that they can prevent their own child from dying.

2) SIDS or unexpected death is never preventable.

Parents cling to this belief because we absolutely want to believe that nothing can be done, sometimes to the extent that if you personally believed you could have prevented your child from dying you are an outcast. (BUT I don't think that the vast majority of  deaths currently classified as SIDs could have been prevented. Even with increasing categorization of infant deaths as suffocation, there is a core that is unexplainable.)

However, this is not to say that we shouldn't teach safe sleep practices, because we could save some babies. A normal baby shouldn't die just because it is left on it's tummy, but the practice of putting babies to sleep on their backs drastically cut the rate of unexplained deaths. If a practice increases survival rates, while it shouldn't necessarily be touted as 'SIDS prevention', it should be taught. Avoiding hurt feelings are not worth any babies life.

My personal theory is that the majority of the babies that die have a protective mechanism missing. Something that when oxygen levels fall they don't stir or react appropriately. I think it is genetic (the ratios of boy to girl deaths are what you would expect if the protective mechanism were inherited on the X chromosome). Here is where it gets dicey. These ratios (SIDS) are also found in many cause of suffocation/choking deaths that are labeled as preventable. This ratio not found in deaths unrelated to airway/breathing.

I believe that there is a possibility that this mechanism is defective to differing degrees, and that these children are more susceptible to suffocation as a result of not responding appropriately to challenges. I look at it kind of like a blood bleeding disorder. Some are so susceptible that they die early on from unperceivable causes that may be internal, others are not affected as much by the disease, but you would never place them around sharp objects. Normally a simple cut would not kill a normal person, but it can kill someone who doesn't clot quickly enough.

I guess I am just tired of feeling like I am getting it from all sides. I think my Son's death was preventable, but I am not sure if every baby would have paid the same price (there were a few earlier incidents that are making me question if Perry responded appropriately to threats, once he stopped breathing in a pool although his head/torso was above water, and while he was aware the entire time, he only started breathing when we rubbed him with a towel). I hate that SIDS parents are fighting teaching safe practices that may have saved my son. I hate that I see so many pictures of similar sleeping environments in pictures with babies, some even worse.

In the end what does it matter if a death is classified as SIDS or suffocation? Is it any less tragic? The repercussions any less other than added guilt? If there is any chance of saving just one baby, why don't we work harder? We will send kids books so that they learn how to read, but will not send parents home with sleep sacks.

We will raise thousands of dollars for a spay and neuter program, but is anyone doing this for sleep sacks and safe sleeping environments? Why is a stray worth more than a child? I love pets, but our society is messed up.


  1. A suffocation death is not any less tragic. Equally hard, just different. The importance of classifying them differently is because we need accurate numbers and reporting for research. Classifying an accidental death (suffocation) and an unpreventable death (SIDS) together, skews statistics, which in turn drives research.

    I wish you peace in your journey through this grief.

  2. The classification is important. It should be called unexplained (no factors), undetermined if there are potential factors but uncertain, and suffocation if it is clear cut. Unfortunately sometimes SIDS was given as a diagnosis when they didn't believe a child could suffocate in a blanket, face down, or by toys. The thinking has swung in a different direction in some of the cases. I do not argue the need for reasearch in both areas (unexplained versus suffocation). SIDS as a category is going away and is now just unexplained- I think that is a good thing as it pushes for research and not just acceptance. There is a belief that at least a portion of these deaths in the past may have been tied to suffocation in light of recent research regarding rebreathing. I just get frustrated that as we have an undetermined result, there are many Moms that babies died that are fighting the safe sleep message tooth and nail and go so far as to acuse me of trying to make them feel guilty and being unkind. That has never been my aim, unexplained or otherwise, but I can't keep quiet just to keep everyone happy. And sometimes the difference in cause that is labeled is merely a difference of who the ME was. I know in TN the group based out of the State had problems with the safe sleep message as there was pressure not to make any Moms feel bad, so it simply wasn't addressed or addressed fully regardless of having the 3rd highest infant mortality in the nation. If the state or the prior commissioner had done the right thing, perhaps the person who put my son down that night would have also got the message? Worst case we would have had no doubts everthing was done right and it was something out of our control, best case he could still be here. I'm sorry if it unintentionally hurts some Moms, but my son might still be here if someone had cared more about the infants dying than hurt feelings. And that makes me angry.