Wednesday, November 16, 2011

Wisconsin Just Went a Step Too Far

November 16, 2011

A few days ago, a poster that was circulating the Internet was brought to my attention in my SIDS group. It showed a picture of a baby in its crib with a butcher knife. The point of the picture was to show that co-sleeping is just as dangerous as…putting your baby in bed with a butcher knife. It’s meant to stop parents from co-sleeping because co-sleeping leads to SIDS. I won’t post the image, but it was sanctioned by the mayor of Milwaukee, Wisconsin. You can find it on Yahoo. You can also find the nearly 4,000 comments that followed.

Obviously, my fellow SIDS parents and I are enraged. Unfortunately, it’s not something that we all haven’t dealt with before.

On a nearly daily basis I encounter some run-in with misinformation and sometimes downright ignorant attitudes regarding SIDS. I’ve come to accept the fact that even most of the medical community fails to understand the REAL facts behind SIDS so I can’t expect my friends and random strangers to.

What I can’t accept, however, is how this fear-mongering and almost defamation of our characters is okay in the eyes of the government and media. The reason that most people think that we are negligent, homicidal, or ignorant parents is because of the information that is being distributed and the way that it’s being put out there.

Ask most people which way you should put the baby to bed and they will probably reply “on its back.” Ask them why the baby should be placed on its back and they won’t be able to tell you. Why? Because we don’t know why. We accept that it “must” be true that putting an infant on its stomach to sleep is bad because the media and the medical profession tells us that it is, but nobody ever tells us why it is. And the fact is, it might not be. If you read my previous post about this issue, putting an infant on its back to sleep could very well be more dangerous than placing it on its stomach.

I see article after article talking about how SIDS happens in low income families (it happens all across the board), in families with little education (between us, my husband and I have 5 degrees), and in minorities. I’ve also posted blog entries on the fact that many articles (and in nationally distributed magazines, not just on the Internet) say that there is really no such thing as SIDS and that it’s really just accidental suffocation.

People believe this. If you read many of the comments under the article on Yahoo you will find a range of opinions. One person went so far as to say, “There’s no such thing as SIDS. It’s just something that they made up for parents who killed their kids so that they won’t have to go to jail.” Another person said, “SIDS only happens when parents are to drugged up or drunk to take care of their kids.”

Yes, there are ignorant people out there. But there are actually articles (by doctors!) that make those very same claims.

We have people out there that believe that we lost our children, not due to a medical reason that has ye to be determined, but because we are poor, uneducated fools that were either high or drunk and didn’t put our baby in the correct sleeping position. Moreover, the media (and now the government, too) not only supports these ideas but endorses them.

SIDS is not a glamorous medical condition. We don’t have any celebrity activists that wear our ribbon on the red carpet. Unlike cancer and heart disease, we don’t have national walks or remembrance days or large sums of money being donated to research. In fact, one of the theories that SIDS is still yet unexplained is due to the lack of funding for the cause, even though it’s the number one killer of infants.

Infant loss is still a taboo subject. Why? Because no one wants to believe that a baby can just die. They have to have something to blame the death on and when medical science doesn’t provide any answers they turn to the parents. When someone says that they have cancer the general assumption isn’t “what did you do?” But when you tell someone that your baby died of SIDS that’s often the first thing you hear. Don’t believe me? Ask most of my SIDS parents. They will tell you.

We didn’t “do” anything. They don’t know what SIDS is. Let’s get that straight. The risk prevention methods, the safe sleep practices…you can do those things and still have you baby die. You cannot do those things and still have your baby live. Although some of the preventions are common sense and good to follow, not all of them are. There is research to show that co-sleeping can be better than not co-sleeping. There is evidence to show that putting some events on their backs to sleep can be harmful.

But you don’t hear about these things.

As SIDS parents, we get blows from all areas of our lives. Doctors treat us as hypochondriacs when we take our surviving children in for a visit. Friends shy away from us. Family members ignore us. Strangers accuse us. Losing an infant is a very lonely situation to be in. Unless you’ve been through it, you can’t understand. And the media is making it difficult to even sympathize with us.

I get that people are well-meaning for the most part and don’t know what they are saying a lot of the times. But if you don’t act or react the way that they think you should, then that’s that. We are so misunderstood, as a group, that it’s difficult to know what to do with us. When you see SIDS mentioned on television there’s usually some crazy reference to it. For instance, in a recent “Law and Order” episode, parents lost their baby to SIDS and went crazy and buried him in the sand. On “Teen Mom”, Amber talked about losing her sister to SIDS 16 years earlier and used the incident as an excuse for her violent and negligent behavior.

My “friend” Emily got upset when I wouldn’t talk to her friend about my loss. Her friend (whom I’d never met) had a stillborn. She didn’t understand why they weren’t the same thing. She was also confused why, after two weeks, I was still crying. Shouldn’t I have been over it by then?

Other friends dropped off after less than three months because I was just too upset and there was too much drama. Yet I’d seen these same friends cry for months after some guy that they met on the Internet turned out to be assholes.

Infant loss is misunderstood and awkward. With an infant, it’s not in utero loss or even a stillborn. We got to know our infants outside of the womb and were privy to their personalities. In some cases, we even got to see them walk and heard their first word. Yet, it’s in a different category than losing an older child because we never got to see them experience any kind of independence.

We’ve been accused of murder, negligence, and even overreacting.

In a recent Facebook tryst, my mom was even accused of trying to “one up” one of my friends in terms of sadness when she said that you shouldn’t take a living child for granted. (To be fair, the post was about things that you shouldn’t take for granted so she wasn’t off topic.) That’s right, someone used the loss of Toby as an example of how people were always trying to “one up” her.

I get accused of blowing my lid a lot. I get told that I need to just let things go. Oh, you wouldn’t believe how much I actually let go of. I write about maybe 10% of what I actually get thrown my way. But sometimes you can’t let it go. One of the reasons why there isn’t as much public outrage and fighting back when it comes to SIDS is because most of us, the parents and family members that it has affected, are still grieving and just don’t have the fight in us. We’re sad, shocked, lonely, and grieving and don’t know where to start. Our anger is all around us and we don’t know how to direct it.

I, for one, am sick of it though. Other minority groups would not allow this kind of misinformation, defamation of character, and downright slander go on and we shouldn’t either. 


Trina said...

I am sorry for your loss. I do, however, want you to know that the city of Milwaukee is actually working to do a good thing. It is not fear mongering, it is, "Okay, we're still losing babies, now what?" Since that ad campaign came out, we have lost 3 babies. I understand where you are coming from. SIDS affects every class, race, educational background. But, when you look at Milwaukee's data, there is a discrepancy. The 53210 Zip code's infant mortality rate is comparable to developing countries and there are some glaring discrepancies. We have babies dying from unsafe sleeping arrangements. It is that simple. I am okay offending people if it saves one of those babies. Or has one mom think twice about bed sharing after drinking. Or the comforters and pillows are set aside. Or, or, or...

Thanks for blogging about this and keeping the conversation alive.


Rebecca said...

Hmmm...interesting comment. And I appreciate your well thought out response. You're right, of course, there IS a discrepancy amongst those deaths in that zip code. However, both sides (pro-co-sleeping and anti-co-sleeping) generally refuse to see the other side. Now, personally, I don't co-sleep with my infant because to co-sleep would have to mean that I actually sleep and I don't. I stay up with my infant all night because she has seizures and has to be watched at all times. She's also at risk for a stroke. So we take shifts watching her.

However, with that being said, there are safe ways to co-sleep. (Co-sleeping does not always mean bed-sharing, which is something else.) There are many studies that show that co-sleeping, rather than increasing the risk of SIDS, decreases the risk. True, unsafe co-sleeping can raise the risk of suffocation but death by suffocation is signifcantly lower than death by SIDS. So if we're talking numbers, which babies should we save?

Speaking from personal experience, I know that I resent telling someone that my baby died and the first thing they say to me is, "Oh, were you sleeping on him and rolled over?" Try being accused of that a few times. It starts getting to you.

Anonymous said...

very good!