Thursday, April 06, 2006

The Purpose of SIDS Organizations

Tonight I had nothing new to say about SIDS prevention, so I decided to Google "sids information" and see if anything new was coming out. What I found was rather frightening and sad. Here are some things I noticed:

1. There are TONS of SIDS organizations. Some are started by families of SIDS babies, some simply disseminating information, others asking for donations. Some states have their own organizations, others are national. Some are actual non-profit organizations, and others are just websites trying to help parents out with information.
2. The information is almost always incorrect. Not only are they regurgitating incorrect information regarding the Limerick Committee and the toxic gas theory, they completely ignore the fact that mattress wrapping has been 100% successful in preventing SIDS. They don't even mention it.
3. Instead of acknowledging true prevention techniques and providing prevention measures for lower socioeconomic families, they continue to funnel more money into studies that never seem to pan out.
4. I don't think I read anywhere that African American babies are twice as likely, and Native American babies three times as likely to die from SIDS (I did not look at ALL sites, as I know some do state this. I only looked at 10-15 sites.) Instead of collecting money and doing "research" on babies who have already died, these organizations should be spending the money on SIDS prevention information and reaching the lower socio-economic groups SIDS affects more frequently. Why isn't anyone questioning why these two groups are hit more frequently with SIDS? (The answer is in the higher likelihood to re-use mattresses rather than purchase a new mattress for each baby).
5. If you really sit down and read SIDS stories, you will see many similarities. But the ironic thing is, when parents of SIDS babies want to tell me how wrong I am about what I know, they always have a, "but our situation was different because..." story just for me. For instance, my baby wasn't even in a bed- he was in his car seat...; her mattress was brand new...; the baby slept with me...; co-sleeping IS safer.... If we left the science up to parents of SIDS babies, each and every SIDS death would be unique and we would never find similarities- except, of course, the deaths. I have read story after story of babies found under blankets, babies dying while sleeping with a parent on a sofa, babies dying in their parents' arms. It IS possible to pick up a baby from his crib who is alive, but is actually dying from toxic gases. That baby can die in your arms. Parents who think the toxic gas theory only applies to cribs have not done their research, and they are looking for a reason to discount it so that they can abandon that theory for a more acceptable cause, such as a medical reason (something was wrong with the baby).
6. With so many different organizations accepting "donations" along with our tax money that goes into research, who is in charge of where the money goes and what research is done? How do we know research isn't being duplicated? And who is watching to see that bogus research isn't performed just to keep the money flowing into the researcher's pockets? Why do we continue to funnel money into the research, but we don't funnel money into a proven prevention technique to either prove it or disprove it for good? For instance, that "research" money could be purchasing mattress covers for socioeconomically disadvantaged babies. That is a quick way to prove or disprove the toxic gas theory. Test out the most successful SIDS prevention technique on the groups most likely to be affected by SIDS and you will prove something. It has already been done in New Zealand. Why won't US scientists do it? Perhaps they are scared to "cure" themselves out of jobs?
7. There is a need for SIDS organizations to help parents deal with their loss. But I wonder how well this is being done. When organizations focus on so many things, and more importantly on accepting more donations, how can they fulfill their purpose in helping parents cope- which is practically free, by the way? Those parents are useful for bringing in more money. They keep them in the dark about the truth, and then encourage them to send money, ask their friends for money, and do fundraisers for "the cause." Maybe they are right. Perhaps giving them something to do is easier for them than the truth: that the very organization parents are depending on for SIDS counseling are the same organizations that failed to tell them the truth in the first place. By the way, this is not exclusive to the SIDS community. It is even worse in the cancer industry, where organizations put prevention information deep in their websites, almost impossible to find. And then the information is incomplete and weak.

I wonder what would happen if I were to apply for a SIDS research grant to provide African American and Native American families with BabeSafe mattress covers for 10 years. I wonder what would happen to the SIDS rate in the US. You know, I have actually written to Oprah to get help with doing that. I got no response. I think she is too busy rebuilding houses for Katrina families. But those researchers...they should be eager to find the truth and should jump on that with all the money they've got coming in. You think?