Friday, February 1, 2008

An Anti-Babies Bitch

Last year's Mar.ch of Dim.es walk came and went while I was still in an incomprehensible fog. I wanted to do something, but this was too much for just a few brief weeks after the death of my daughter. I went to the website frequently searching for, well, anything. They seemed like a great cause to get behind: We're against babies having health problems and dying. Who can't get behind that? There were helpful links on genetic problems, if you had no idea what a genetic problem was. It was easy on the sidebar on the front page to navigate your way through to explaining problems, specifics on genetics and even grief. I had told Mr. ABF that I wanted to walk this year, for Maddy. Maybe get brave and make shirts. I wanted Bella to see what it was like to be among people who had survived loss, survived perfectly, and survived with problems. I feel we now straddle all of these categories, and I want her and us to embrace the beauty of it all. I wanted my money to go toward research in prenatal testing so maybe someday people like us could know that their babies wouldn't live on the outside. Maybe someday, when we eat through tubes and fly around in our space cruisers, they could fix these issues on the inside. Or before you even got started.

I knew then that their focus was premature birth and complications. Believe me, walking around a NICU for a week, that's pretty much all you see -- very tiny babies struggling for life, trying to breathe, trying to gain weight. Maddy was the giant in the room, ironically worse off than the baby measured in ounces who shared her space. And I have no problem marching for this either. Especially now, having met so many of you who have lost babies born too early, apparently for no reason. I want to do anything I can to stop this. Too many deadbabies? Bad. Please take my money while I lace up my shoes.

So I clicked over to the MoD site to get the dates and figure out what I needed to do, and lo, they've revamped everything. (I know my memory is shit, but for some reason I don't remember the site being quite so, um, annoying? I do not remember "Birth Defects and Genetics" falling under the "Pregnancy and Newborn" category, replete with a smiling family of three splashed across the top of the page, for example.) The marketing geniuses ran a study and determined that not enough people knew what the MoD was or did. They realized that people were donating and (get this) even marching with office mates and family while completely clueless as to why they they were throwing out money and wasting a Saturday morning walking around downtown. The stats were nuts -- 85% of people surveyed had a positive view of MoD, while only 45% had a modicum of a clue as to what MoD did.

And so they changed things. When I thought about MoD I guess I always thought "birth defects," and I guess if you pressed me ever so gently, I'd concur that being born at 26 weeks for no reason at all leaves one with some fairly serious defects. But I felt, with my full-term baby and sloppy genetics, included in this banner and I guess I felt they cared about people like me too. The march is now called "The Mar.ch for Babi.es." Which, I must say, hits me hard. I'm marching for a DEAD BABY. I'm marching for NO MORE DEAD BABIES. And I suppose you're waving at me frantically, but tash, you're marching for a double negative! When you scratch that all out, aren't you really FOR BABIES? Ah, but I can see the chipper signs with the healthy cherubs now (well, in fact, they're all over the website for the walk) -- THIS is why we're marching people, so you can have one of THESE.

I can't have one of those.

At least, not for the reasons you're now espousing in earnest on your website and in your marketing materials. The widgets they've created for you to put up on your blog, in the event you want to, oh, raise money for this organization by announcing that you're walking, say "Tips for Pregnancy." (Is it that tough to make an "in memory" sort of widget? Maybe with some tips on grief? I have a few family members who might find that sort of thing useful.) People at MoD, I'm here to tell you that in the circles I run among, no amount of water drinking, exercise, sleep, and abstention from booze, tobacco, lemon stilton, mercury/PCB laden-fish, and cleaning the cat box is going to help carry a healthy pregnancy to term. (Today's "Tip of Day" directs you to a picture of (vomit rising underneath my psychotic laughter) a pregnant belly with a bow around it and the advice that you should look into the effects of drug and drug-free labor. I'll get right on that. Right after I, um, get pregnant again (relapse of psychotic laughter) and am guaranteed a LIVE BABY at the end of labor. The downsides of epidurals are the least of my problems, to put it mildly.) Unless your "tips" include "Use your Ouija board to determine whether your genes will align correctly this month" or "read up on how many complications there are for which we have no testing to determine -- go ahead, scare the crap outta yourself," I'm not horribly interested.

The one marketing video I clicked on involved some celebrity I had no knowledge of, poking away tears with her manicured nails while relating the story of her son's premature birth, followed by hazy happy video of said son, all smiley and ALIVE. And them marching. Because we're for babies, people. How can you not be for babies?

I feel, probably wrongly in my current state, that they've cut me out. That instead of marching for a child who died due to a genetic problem for which there is not only no cure but no means of detection prior to birth, I'm marching for people who live under rocks and don't know that smoking is bad for you while pregnant. Believe me, I'm all for public service (Don't drink and drive! Only you can prevent forest fires!), but this is one area where it's probably best not to inject my cynicism and snark. I know a good number of you out there find this a very appropriate and sympathetic charity, and I'm not judging you here. I'm probably just flailing about, trying to find something to piss me off. I'm fairly confident not too many other people feel the way I do, and will still march and raise money this year, like they have in the past, and that it will all be good, regardless. I am, I admit, the double-entendre bitch. I'm not sure whether to collect my thoughts and write someone in the marketing department, or say something on their new blog (I'll be sure to notify you so can pop over and bring marshmallows for the flamage that will undoubtedly ensue). (Perhaps you should go find your bag right now, because it may be taking place while you type, right here.) Or to suck it up and march for my dead kid anyway. Or to find another charity, who makes less of the lovely live baby sucking his toes at the top of the page and realizes that we still have a ways to go if we're really really really going to stem the tide of grief-stricken parents. Miles beyond "eat vegetables, set down that Chardonnay, and use a seatbelt!"

24 comments:

meg said...

Yeah, I'd be staying away from this, for sure. I don't need to go near any place that has miracle stories about premature babies.

I am firmly in the deadbaby camp. Where else would I be? I know they do good work...but I just couldn't have anything to do with that at the moment. Maybe, one day?

Amy said...

Oh, Tash, I love your rants...I have a bracelet for William at MoD, and yet I never realized the happy f**kin' family in the top corner when you go to the main site! I still believe in MoD and will keep contributing to my sons memorial bracelet, but I do think you should write them, no one needs to suffer and see the HAPPY ONES! Maybe instead they can get pictures of all of us crying and throwing things! Would that help? Sorry my own sick sense of humor there.

Amy said...

In case you do decide to walk for Maddy and not go through all the BS there is a link on my blog to get you there. Take care, A

Coggy said...

I completely understand your rant. I would feel the same. At a time when you are probably finding a site for the very reason that your baby has died you do not need all that crap rubbing in your face.
Tips on a healthy pregnancy? Really?
Well I followed all the tips down to the letter, I had a text book healthy pregnancy and apparently my son was perfect. He just happened to be dead.
I'm angry now and we don't even have MoD here and I have never even been to their website.

Antigone said...

You have the Onion Atlas!
Tash+=2pts;

(All I do at home now is read everyone's blogs from start to finish and I just did yours. Some post since October mentioned it.)

Antigone said...

Regarding your comment...

I've hooked up with a perinatologist who I'm going to transfer to once we get our initial results back.

ms. G said...

Interesting post, Tash. You actually touched on a touchy topic for me. Let me say, of course MOD is a good and worthwhile thing, okay? BUT....I, well, don't have much to do with them because they don't do anything for stillbirth, even, education. And, it pisses me off. I mean, seriously, if their slogan is "for babies" shouldn't they mean ALL babies? Again, I feel a little weird here, they are a great cause, but I personally direct my energy and money towards more stillbirth related areas. I actually wrote them a letter after M died, urging them to include stillbirth in their education and research. I got a personal phone call and letter. The letter included info on surviving grief. The letter made vague references like "I'm sure MOD has done something for stillbirth, though I don't have that info available to me at the moment" Mmmmmm....while I appreciated the woman's expression of sympathy, the whole packet on grief felt somewhat like a brush off. You know,the "here you go, rather than focus on what you really wrote us about, it is probably your grief and overemotional state that caused you to write, here, deal with your grief honey" kind of feel to it.

Whew! All that to convey my mixed feelings about MOD. Sorry for the long comment.

Honestly, from what you said, the website sounds like they are catering to the "normal, let's only talk about happy endings" crowd. And while I can appreciate healthy pregnancy tips, well, doesn't it just have that whiff of blame that we deal with anyway?

Tash said...

Ms G., maybe they listened to you? They now have a whopping 4 paras on stillbirth (but nothing on neonatal death, even though the genetics section covers a number of lethal problems). Their main spiel, as they spell it out on the top of their about page, is: "We're dedicated to improving the health of babies by preventing birth defects, premature birth and infant mortality." So it sounds like they should be *catering* to us and people like us and making sure things like happened to us never happen again. I'm just not getting that vibe anywhere else on the site.

Is it a good cause? Certainly. Just feeling, like you, a wee bit peeved.

Beruriah said...

I have a bracelet for Natan at MoD, yet I found myself profoundly annoyed as I constantly received their "7 tips" for a healthy pregnancy in the mail this spring/summer. I know the information is true, but I felt like it gave fodder to people who think we must have done something to cause Natan's death. I see no reason why there shouldn't be pictures, or stories about the ones who didn't a "miracle."

c. said...

I think the whole for babies thing is a bit overdone. Who isn't for babies? I mean, my god, the live baby thing is a given for shit sake!

Of course, it's not though, is it? It comes as no surprise that I want something for dead babies. And I can't quite figure out why so few are willing to focus their attention on this effort? Surely, the demand is there. We are all proof of this, aren't we?

c. said...

Okay, I'm back.

I guess the thing is, there's a whole lot more money in the business of live babies than there is in the business of dead babies, non-for-profit or not. It always comes down to money, doesn't it? My guess is that the MoD, by promoting their happy agenda of live babies receives more money. Who wants to give money to dead babies? Who wants to even talk about dead babies, never mind raise money for such a cause? The idea that there can even be dead babies is such a hard thing for most of society to even comprehend. So, let's just pretend it's not happening at all. Ignorance is bliss, isn't it? I should say so.

Kay, I'm done.

kate said...

DO NOT START me on the MoFD (and you can guess what the F stands for i am sure). I clicked on them shortly after Nicolas died and then did a little research and found out that, gee, they're not interested in stillbirth really. I guess that it does not count as a birth defect?? Maybe only babies born alive matter. Then they stole our awareness ribbon. Yeah, that would be OUR dead baby awareness ribbon that WE were using first not the MoD or those *&^@%@$!! pro-life people.

Yes, MoD does do good work. But lemme tell you that not all parents of alive preemies are so thrilled with that work either.

kate said...

PS. don't mind me, i've got issues...

Aurelia said...

C. is right, I've done fundraising for years for a group that helps women after miscarriage, stillbirth, and neonatal death.

And let me assure you, there isn't one friggin dime of charity money or govt. funding for dead babies or their families. Mention a dead baby, and that politician you admire so much? He'll turn in horror and run so fast it will scare the crap out of you.

No-one wants to give a charity that has no miracle cure. MoD has no choice but put that on their website or they will go out of business.

Sad, stupid, and ignorant. Like my friends say, never underestimate the stupidity of a voter, or the ignorance of the average person.

Megan said...

Man. I just checked out the site - and the featured blog by a woman who can only be described as the Stepford deadbabymomma.
Sample entry:
"I have a new years resolution. It's not to lose weight (although I need to), but to make a promise to myself. I am going to wake up each and every morning and say, "this is going to be a great day, this is going to be great year!!" I've decided I NEED to stay positive. I don't want this whole grief thing to drag me down anymore."

Antigone said...

Their website has a section, "Pregnancy & Newborn Health Education Center/Complications". The articles on Loss are in the lower right hand corner of the page. Its as if they felt obligated to include them but pushed them away as far as they could. STD's are placed higher on the page and include twice as many articles. Does that mean having a stillbirth is more taboo, more shameful than having Gonorrhea?

charmedgirl said...

march of dimes, to me, is like charity lite. i think it's jsut something easy for the masses to latch onto, but DON'T for the love of god just don't get too deep. dead babies? wayyyy too deep for most. i don't blame you for stepping away.

i just donate to planned parenthood.

Antigone said...

Oh and 'Bird Flu' is at the top of the page. More women are affected by Stillbirth than they are by Bird Flu. Their choice of topics and presentation can't have anything to do with applicability if they give precedence to Bird Flu.

Bon said...

amen, Tash.

i wish that fundraising organizations - no matter how good their work, how noble their cause - would somehow stop with the happy shiny babies. the hospital where Finn was born, and to which i contribute in memoriam every year, still sends me these goddam flyers that essentially say contribute more and contain the heartwarming stories of babies born smaller than mine who lived, and what horrors their families went through.

i don't think they get that that just makes me hate those families and the hospital, just for that white hot frozen moment.

The Yak said...

For what it's worth, the March of Dimes started out to combat polio (also called infantile paralysis). When the Salk vaccine wiped out the disease in the U.S., they had to scramble for another mission or go out of business -- God forbid.

Antigone said...

So what is the alternative to MOD? Are there any organizations really interested in funding stillbirth/neonatal deaths of the non-crackbaby variety?

Julia said...

I don't do well with the shiny happy baby pictures, so methinks I will be staying away from the site. I am also not a marcher, usually. But your description of why you wanted to march is so very thoughtful and lovely that I would rethink my non-joiner status. You know, if they didn't stick us under the rock.

Carole said...

If it was me...I'd probably pick another charity. I just cannot do the smiling happy look at my baby stuff. Nothing I did would have changed Joseph's odds. It's great that they are focusing on the stuff like smoking and that shiz...but come on...like you said...that's really for those that are living under a rock.

Miracle stories are great...but you are right...they are squeezing the rest of us out with their new campaign.
~Carole

littleangelkisses said...

I certainly can see your point, but our local division has started a NICU support group, several of whom have babies that died. We try to be welcoming of all women no matter the experience. We even recognize mothers of angels are our local walk. At the summit I attended last year, there was a forum about infant loss led by a mother who lost her son. Not all MoD events are centered on live babies.