Did the mattress cause SIDS?

I have read up on every SIDS theory that is currently circulating around and one of the most infuriating ones is the "mattress" theory.

For those not familiar with it, it's the idea that the baby's mattress (and all mattresses really) had toxic fumes in it which, in bad times, can cause respiratory problems and in worst times can cause death. This theory was originated by Dr. Sprott who has determined that there is even some fungi (bacteria) in the mattress that was even mentioned in the Bible. (I am not kidding...do a Google search. It's mind blowing.)

Probably not surprisingly, most of this "research" is being backed by a mattress company who wants you to buy their mattress. Although, technically, any organic or natural mattress should do, they really (REALLY) push their own.

The biggest selling point of this study is the claim that New Zealand has not had any SIDS deaths since 2006 because everyone in New Zealand apparently has these mattresses or these mattress coverings. (Some claims vary and state that there have been no SIDS cases while babies slept on these mattresses, which is a little different...) Voila! SIDS is no more. That's right, all we have to do is follow New Zealand's lead and none of our babies will ever die.

Sounds great, right? I mean, all we have to do is drop a few hundred bucks and we can sleep a lot more peacefully at night.

Except, of course, that is isn't true. New Zealand continues to report approximately 46 cases of SIDS every year. In 2008 alone they reported 50. I tried searching around for this but just type in "no SIDS in New Zealand" and you'll come across all kinds of parenting message boards where people claim that the mattresses are the be all and end all and that there really are NO reports of SIDS in New Zealand. (I am assuming by people who have read Dr. Sprott's claims but haven't done the real research for themselves.)

Here are some of the questions that I have posed regarding this research.

Is the effect cumulative? No.
So if it's not cumulative, then how does this affect  the babies who die of SIDS while being held, in car seats, or on surfaces that are not mattresses? Nobody knows.
Can you point me to the research that shows that more than 100,000 of these special mattresses are being used by babies in New Zealand? No.
Then how did we get that number? That's how many units are estimated to have been sold.
When conducting an investigation into a potential SIDS case, is it routine to ask what type of mattress the infant was sleeping on? No.
Then how can you say that there have been NO deaths in New Zealand on these special mattresses (wrapped or otherwise)? We can't.
What about the babies who were sleeping on brand new mattresses anyway-you know, the ones that (according to the studies) shouldn't contain the bacteria? We don't know. 


Because I know some people are still going to argue that this is the way to go (and that's fine, buy whatever mattress you want) here are some of the counterarguments for the study:

- Mattresses made in the United States in the past 15 years almost all have vinyl protective covers on them which, according to the studies, should theoretically block out the "toxic gasses." I realize that some babies died later and therefore there was time for an accumulation of spit-up, urine, and sweat to form (which supposedly provides a good atmosphere for the gases) but what about those of us who lost our babies at 4 days, 12 days, 7 weeks, etc?  On brand new mattresses?

- One of the key parts of these studies focuses on the fact that SIDS happens most often in low-income homes, presumably because low0income families re-use mattresses which gives them more time to grow the harmful bacteria. But, again, this doesn't take the "high income" families into consideration or the low-income families who used new mattresses. It also makes the (poor) assumption that only low-income families reuse mattresses and I don't like that. Because it's not true.

- Scopulariopsis brevicaulis, the fungus that's supposed to be on the mattresses and is needed for the toxic gasses to be released, is almost never actually found on the mattresses themselves. They've tried to recreate it on lab samples and have been unsuccessful.

- SIDS happens (in large proportions) in countries where mattresses are not used at all.

- According to the theory, death occurs because the toxic gas reduces acetylcholinesterase, which causes heart failure. However, post mortem examinations shows no reduction in acetylclolinesterase.

- Antimony was not added to mattresses before 1988 and yet there were SIDS cases before 1988
at the rate of about 2,000 per year.

- Antimony can be found in most babies, even before they are born and had any exposure to mattresses at all. it could come from the mother's diet or even just regular old dust.

Even the original scientist, Richardson, who came up with the idea has been upset by the way this has all unfolded and has not endorsed the findings.

And speaking of the research...I have found more than one "official" document that gives data. And all of the data is different. Yep. It changes. I was unable to find two reports that had the same statistics and data. I have read more than 25 official studies and none of them convinced me. What I did find, however, was that a lot of the funding for some of the studies was given by...a mattress company.

Mama's Broken Heart

If you've been around for awhile then you'll already know that I am obsessed with music. I don't spend a lot of time listening to the radio these days because I think a good majority of it is manufactured crap, but every once in awhile something will peek through and stick with me. Enter Miranda Lambert. Now, this is someone I would normally detest: she's blond, perky, consistently ranks high on the charts, and is EVERYWHERE. But I like her, as evidenced by a former blog entry (Letter to Miranda Lambert). When I heard her new song, which is supposed to be spunky and funny, I broke down into tears, however. So why would a fast-paced, sassy, song about a break-up make me cry? Because I could swear that co-writer Kacey Musgraves has listened in on a few of my conversations with SIDS moms.

So the song is called "Mama's Broken Heart." The subject ain't pretty. The chick in the song has just suffered a break-up and has gone a little bonkers, much to the chagrin of her mother and other church-goers in the community. Rather than fixing her hair, straightening her skirt, and holding her head up and taking the high road, the narrator cuts off her bangs, goes on a drinking binge, and generally lets herself fall apart.

I can relate.

I have talked about this a lot, but one of the fastest ways to lose sympathy from people when you lose a child is to express your REAL emotions. People want you to behave properly. This means only dropping a few ladylike tears, holding in your emotions, and generally being a sympathetic character. Outsiders want to feel sorry for you. They don't want to be afraid of you. They want to be able to point at you and say, "She's been through a terrible trauma, but you wouldn't even know it. She's handling it SOOOOO well..." Then, they can cluck over you and pet on you, and do as little as possible. Just enough to feel good about themselves without actually having to make much of an effort.

But what about the rest of us?

What about those of us who scream and yell and write angry blog entries and break down in supermarkets and become agoraphobic and paranoid and send out depressing status updates? Well, we must be avoided at all costs. After all, we're not handling our situation the "right way."

I have found that people who have no idea of what we are going through or have gone through sure do become experts on our situation when they decide that we must be doing it the "wrong way." It's incredibly easy for someone to sit back and say, "Well, I wouldn't have done THAT" and judge when the closest they have come to losing a child still comes nowhere close to actually losing a child.

In the song lyrics, Miranda talks about never letting people see you cry, powdering your nose, fixing your makeup, and generally being presentable and attractive, even when you have a broken heart. I can relate to that. I can also relate to the last part of the chorus:

gotta keep it together
Even when you fall apart
But this ain’t my mama’s broken heart

No, this isn't my "mama's broken heart." In more ways than one. Losing a child is NOT like a break-up. It's much, much worse. I do think, though, that people treat it like a break-up, something that you CAN "get over" easily. Maybe our parents DID come from a "softer generation." They certainly didn't have the public platforms that we have now (hello Blogger, Facebook, and Twitter). I've also been accused of being crazy ("run and hide your crazy and start acting like a lady") and told I need to "keep it together" for the sake of Sam and Pete ("gotta keep it together even when you fall apart").

I have lost more than one friend thanks to my public outbursts and my inability to hold things in. But I've also made some friends because of it. So it probably evens out.

And if you haven't watched the video, watch it. This is how crazy I often felt and feel. 

Mama's Broken Heart

I cut my bangs with some rusty kitchen scissors
I screamed his name ‘til the neighbors called the cops
I numbed the pain at the expense of my liver
Don’t know what I did next all I know, I couldn’t stop

Word got around to the barflies and the baptists
My mama’s phone started ringin’ off the hook
I can hear her now sayin’ she ain’t gonna have it
Don’t matter how you feel, it only matters how you look

Go and fix your make up, girl, it’s just a break up
Run and hide your crazy and start actin’ like a lady
'Cause I raised you better, gotta keep it together
Even when you fall apart
But this ain’t my mama’s broken heart

I wish I could be just a little less dramatic
Like a Kennedy when Camelot went down in flames
Leave it to me to be holdin’ the matches
When the fire trucks show up and there’s nobody else to blame

Can’t get revenge and keep a spotless reputation
Sometimes revenge is a choice you gotta make
My mama came from a softer generation
Where you get a grip and bite your lip just to save a little face

Go and fix your make up, girl, it’s just a break up
Run and hide your crazy and start actin’ like a lady
'Cause I raised you better, gotta keep it together
Even when you fall apart
But this ain’t my mama’s broken heart

Powder your nose, paint your toes
Line your lips and keep 'em closed
Cross your legs, dot your I’s
And never let 'em see you cry

Go and fix your make up, well it’s just a break up
Run and hide your crazy and start actin’ like a lady
'Cause I raised you better, gotta keep it together
Even when you fall apart
But this ain’t my mama’s broken heart 

The Dead Kid Club

About six months into my grief I started exploring online communities after my "real world" grief support groups didn't help me in the way I hoped they would. I found one that I liked and I met a lot of great people there. We have since moved over to Facebook together and after nearly 3 years of "hanging out" online we have exchanged phone numbers, email addresses, and street addresses.

In the beginning, it was our deceased children that brought us together. Most of us were in the early stages of grief. After awhile, though, things seemed to change. These days, although we do talk about our deceased children, they're no longer the sole foundation of our friendships. These people (mostly women) know all about Sam and Iris. They send them presents in the mail, they keep up with their doctors' appointments (Sam just had a brain MRI with sedation yesterday), they remember their birthdays...And I do the same for their living children. I find myself getting concerned about Cooper and Emma and Dylan and wondering how Vivi and Paige are doing.

When we're feeling low, we write each other for support. You can also catch us up at 2:00 am talking about mortgages, foreclosures, surgeries, and men. When I was feeling low the other night, I was up chatting with a friend around San Francisco whom I have never actually met in person. We have formed a semi fan club for Darryl Dixon and his dirty poncho and relish discussing the latest developments on THE WALKING DEAD and DANCING WITH THE STARS. We might not always agree on politics or Kenny Chesney but we actually have fun together.

And you should have seen our conversation about historical porn and James Patterson yesterday.

I never thought that when I met these people one day we would not be spending the majority of our time depressed and crying to each other. If someone had told me that we would eventually be sharing jokes and laughing and making fun of reality television then you might as well have been telling me that I had just won some ocean front property in Arizona.

There are still some days that are hard and we meet all birthdays and anniversaries together. But I really feel like we share more than that. I don't like belonging to the Dead Kid Club but, if I have to, then I am glad that I found friends that make it a little easier. 

Different stages

Early on, I got very confused by other grieving mothers who seemed to be at different stages than I was. Okay, confused isn't the right word. Sometimes, I would get downright angry. At one point, about 7 months after Toby died, I met a woman who had lost her child about a year earlier and she seemed so blase about her loss that is actually angered me. I have no idea why. It made me feel defensive. She was expecting her subsequent child and she was flippant about her plans for him, nonchalant when she talked about the way she handled her life after the loss of her son, and noncommittal about her plans regarding the anniversary of her son's death. I didn't get it. Okay, I was downright hateful to her at one point.

I am sorry about that.

The fact is, I "get it" now.

The poor woman had five other children. or six. Or something. Anyway, she had a lot. Much, much later on I read something else that she wrote regarding the birth of her subsequent child and how scared she was and how nervous she was. Honestly, I think we had a lot more in common than I knew at the time. Like me, she didn't follow all of the preventions and rules. Like me, she doesn't follow the vaccination schedules. Like me, she co-sleeps. Like me, she ended up not using a Snuza after the first couple of weeks because it made her a nervous wreck.

After the first year of grief, something clicked inside of me. I no longer felt that awful, horrible grief that I had felt for the first year. I no longer felt the numbness, either. Instead, I started feeling a lightness. I started feeling GOOD. And that actually made me feel guilty. It almost made me feel worse. And then I thought about jerks like me who had made people like me feel bad in the past. 

I hope she's doing okay now. I hope she knows I'm sorry.

A doctor's warning

It's bad enough that you have to put up with ignorance from the general public, but doctors' ignorance angers me even more. At this point, I know more about SIDS than any of the pediatricians I have met do. I keep up with the latest research and they just can't-not with all the other illnesses and childhood ailments they have to be on top of. Still, this story bugs the hell out of me.

Over the weekend my mom got a text from one of her students. It read like this:

Please pray for my baby cousin. She was born in February and the doctor says that he is afraid that she will die from SIDS.

I mean, really? If we could really predict when SIDS might happen then we would be able to prevent it because we'd know what was causing it. I have played around with different scenarios, trying to give this doctor (whom I assume is local) the benefit of the doubt. Perhaps he gave her a list of the "SIDS reduction" tips (and I call bullshit on those) and she interpreted that as he was afraid her baby would die? I would LIKE to think that is what happened.

However, after dealing with a lot of ignorant doctors in the area, I could also see how he might have really told her that he was afraid her baby would die from SIDS. *Note: all of my doctors at present time are good ones. I have weeded out the dummies.

What bothers me just as much is the fact that my mom's student believed it. There is so much misinformation out there about SIDS and that is one of the main reasons why it carries such a stigma. People believe that it can be prevented, that it's contagious, that it can be caught "in time", and, worst of all, that parents are at fault for it. How many times have I told someone that my child died of SIDS only to have them nod their head in compassion and ask, "Did you forget to put him on his back?" Too many times to count.

in the living room?

I've had a lot of crazy things to said to me since Toby died but this one might actually take the cake. I can't even make these things up...

So a friend came by recently with a package. Before coming into the house, though, she stood at the door and asked, "Is there a coffin in there? Because those things freak me out."

Okay, even if we'd had a good old fashioned Irish wake with the coffin in the living room Toby died almost THREE YEARS ago.

If ever there was a "smack my head" moment, that had to be it.

Did they know or forget?

A few days ago I ran into someone I hadn't seen since before Toby's death. To put it more accurately, I hadn't seen this person since before Toby's birth. We spent a few minutes talking, pleasantly surprised to see one another, and they commented on Sam and Iris who were with me. No mention was made of Toby at all, which I'm kind of used to at this point, but I was curious this time. Did they forget that I'd had another child and that child had died? Or had they even known to begin with? While it was highly possible that they had not known of his birth and subsequent death, it was highly unlikely. We hadn't seen each other in a few years but we had mutual friends who had attended his funeral.

So, I asked. "Did you know I'd had another child between the two?"

They hesitated. "Yes, I did know that you had one that had passed away," they answered at last.

Huh.

Well, that was interesting.

In the past it might have hurt my feelings that this person had known and not only had they not contacted me but they didn't bring it up when they saw me. This time, however, it didn't bother me. I thought it was kind of funny, really, like the big white elephant in the room. I knew that my child had died and they knew that I'd had a child that died but nothing had been done by either one of us in regards to this fact toward one another in the past few years.

So, I just shrugged. Oh well. I changed the subject and we carried on.