Monday, October 24, 2011

Educating Others

I'm going to get on my soapbox here about the so-called "SIDS prevention" campaign. I have to say, few things have made me as sick as this campaign does. I see the posted signs in many places: doctors' offices, hospitals, the health department, etc. I have even ripped a few down. To me, as well as to other parents who have lost their children to SIDS, using the word "prevention" is a slap in the face. The very phrase implies that we could have done something differently and our children would have lived.

The "prevention" techniques include placing your baby on its back, not overheating your baby, using a pacifier, not using a crib bumper or a blanket, having a fan going...There's just one fatal (ha ha) flaw with these techniques, however.


That's right. Let me repeat that.

We do not know what SIDS is. SIDS is a cause of death by exclusion. That means when an autopsy has been performed and every.single.cause.of.death has been excluded, they call it SIDS.

The crib bumper thing, the extra blanket thing, the soft mattress thing, the sleeping alone thing...those are all part of accidental suffocation.

Accidental suffocation is not SIDS.

Yes, there is the whole re-breathing C02 theory, but it's just that...a theory.  What about the parents who lost their children to SIDS when they were wide awake or holding them? They didn't re-breathe their C02.

There are many theories out there and so far ALL of them have proven inconclusive.

Safe sleeping practices will prevent against accidental suffocation. But that's it. You can prevent something that is not understood. SIDS is, as of now, not understood.

I got very angry at two of my Facebook friends, and these were actually pretty good friends, who said "What does it matter what they call it as long as it saves babies lives?" Excuse me, what does it matter? It matters to me. It matters to my friends who have also lost children to SIDS. It matters because the "prevention" steps aren't even preventative methods to stopping SIDS.  When I suggested that they, instead, call it "safe sleep practices" my friends said, "Yeah, but then people might not pay as much attention."

Well, so what. You can't call something by a different name just because it will get more attention. If you want people to wear bike helmets on motorcycles you don't say, "Wearing helmets will prevent cancer" because people are more afraid of getting cancer than crashing.

Calling it "SIDS prevention" is another issue because it makes others think that you MUST have done something wrong and didn't "prevent" your child from dying. I have talked to several people, who upon hearing that Toby died of SIDS, have replied, "I'm sorry. Did you not put him on his back?" Even the public doesn't understand that you can still follow all of those cautionary methods and lose your child. Why? because SIDS is not understood.

NPR put out an article about how SIDS probably wasn't even real and that it was just suffocation that wasn't being reported correctly. I started to write a scathing comment, but the comment sections were turned off. Luckily, a fellow parent that I "know" online had already gotten his two cents in. This is what he said:

For those of us who have a dead child as the result of SIDS, not crib outgassing, DTaP vaccines, co-sleeping, suffocation, or any thing else, this article is insulting to us and the memories of our children. Next time NPR decides to run an article about the horrific experience and aftermath of parents losing their children to SIDS, use some concrete scientific and medical evidence as the foundation of your story, not a select few opinions that this story's own language debunks.

"In some large metropolitan areas, for instance, you may have a medical examiner who is a board-certified pediatric pathologist," she says. "In other smaller counties or jurisdictions, you may have an elected official, coroner, and he may have no medical background."

This implies that your "experts" are the credible ones and all other professional medical researchers at NIH, Children's Hospital, The Mayo Clinic, etc. are a bunch of quacks??? NPR, you really dropped the ball on this one...well, unless your purpose was to outrage at least one grieving father of a son who died from SIDS, in my arms, not face down in a crib, not co-sleeping, but head on my chest, held comfortably, unobstructed breathing, yet still died. Please give me the "ABCs" of that!"

You can find that article here: 
Another parent commented and brought up a VERY good point. It was the point that I was going to make:

Good job to everyone who has commented with actual statistics and facts. You did a better job than NPR on this one.

When my son passed away the medical examiner told us that they would be able to know if the baby suffocated. There are certain things that happen to the human body that show if suffocation occurred. If these things are present during an autopsy then the death is not ruled SIDS - it's ruled accidental suffocation.

All over the world parents share beds with their children ... far more than they do here in the USA. And all over the world SIDS deaths are lower than they are here.

This article is nothing short of disgusting."

For a "westernized" country, the US has a very, VERY high rate of infant mortality. In other countries, where it is encouraged for parents to sleep with babies, the death rates are a lot lower. 

SIDS was the storyline of a recent "Law and Order" SVU" show and it was mentioned on "Teen Mom" a few weeks ago. It seems to be getting in the news a lot lately. A few of us are getting something together and sending it to Dr. Oz to try to do a show on it and include us. There is SO much misinformation out there and that needs to stop. We are already treated as criminals and bad parents, not to mention the fact that are friends treat us as though we should be "over it." Or that our doctors treat us like paranoid hypochondriacs whenever we take our surviving children in because of what happened to our infant, thus delaying important medical care. (Look what happened to Iris when she was born. They made a social worker talk to me because the pediatrician thought I was paranoid and needed help and yet less than a month later Iris was admitted for having multiple seizures and a rare genetic disorder.)  

Another comment regarding the article above:
In almost all of the cases, Tackitt says, she found that the baby was in an unsafe sleep environment.

My heart goes out to everyone who has lost a child and now feels anger due to the above statement. It must be hell."

"This article was the most poorly written piece of one-sided propaganda that I have ever read. Dig a little deeper NPR.

My son died on his back, in a safe sleeping environment. SIDS parents don't need any more junk journalism telling us what we did wrong. Especially when so much is omitted from the article to begin with.

Until this article is retracted my NPR giving will stop. Obviously my monthly giving hasn't gone to produce productive journalism."

As a mother who was told she lost her son to SIDS three years ago, this article saddens me to the core. After being at peace with the medical examiners report on the cause of his death as SIDS, am I now supposed to think that my son died of suffocation because he was found in his parents bed? I am angry that NPR did not look deeper into the medical reasearch that is out there that may be close to finding a reason for SIDS. The medical examiner in Detroit is basing her conclusions on experience not on actual scientific research. And for parents who have lost their babies to SIDS to now think that it is their fault based on one woman's opinion is heart breaking. The deep wound in my heart caused by my son's death is now ripped open due to this report. I find myself rehashing the night he died and wondering, could it have been prevented? I wish I had not been listening to "All Things Considered" last night."

This study is not based on medical research, but on spurious conclusions from unqualified medical examiners. We need a worldwide study on this complicated issue, as babies die from SIDS the world over. My granddaughter is one such baby. She lived and died in Germany, because she stopped breathing in her clean-kept crib. We don't know why she stopped breathing, but it is NOT because my daughter and her husband did not care for her adequately. They are educated, responsible, and devoted parents. As it happens, the doctors in Germany speculated her death was a reaction to the rotavirus vaccination she received the day before her death.

Why is the medical community not investigating autoimmune disorders, respiratory failures or allergies? I can't abide by the fact that doctors and social workers tend to blame the patient or parent for anything they cannot cure or fix. That is a disgraceful and dangerous mindset.

I cannot think of a more evil and disgusting "treatment" for this problem than to tell the parents of SIDS babies that their death was the fault of the parents. It just causes heartache and mental harm to those who hear it and have been affected by such tragedy. It's heartless."

And finally...

The problem that I have is this: if the definition is "unexplained death," then you are saying that you don't know the root cause. Period. If you don't know the root cause, how can you make a definitive recommendation on prevention?

Sure you can correlate until the cows come home, you can make suggestions, hop on one foot, and invoke magical spells, but this is NOT science.

Dig into those numbers, and you'll start finding some real confounding variables that come with rigorous questions.

Compare death scene investigations of affluent SIDS parents with lower income SIDS parents.

What is the definition of "extensive" investigations? Is there a standard for education/experience of an investigator from jurisdiction to jurisdiction?

And don't get me started on suffocation vs not breathing because the brain shut down. There's a way to know for sure, but do we perform an autopsy or do we play with dolls to get the answer?

The painful reality here is this: the # 1 cause of death in infants from 1 month to 12 months is this: we don't know.

And at this rate, we aren't going to know!"

Anyway, this makes me angry. I have to admit that although I knew a lot about SIDS before Toby died I was misinformed about many things. Until we find out what it is and what is causing it, every infant is at risk.

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