Wednesday, May 20, 2009

May is Preeclampsia Awareness Month, now you're aware of it, right? ;)

Seriously, I mention PE awareness because it leads me to what I wanted to discuss with you tonight, boys and girls. A few days ago, in my blog-visiting, I ran across a blog that had this image on it:

So, I checked out what the petition is, posted the image on my FB page and on this blog. One of my FB friends asked what it was about, so I explained briefly after consulting the official petition wording so I'd get it exactly right. And it started me thinking.....

I'm gonna admit something that will probably sound very selfish, or juvenile, etc, but here goes: I have a love/hate relationship with the March of Dimes. There, I said it. Yes, I did have 2 preemies. Yes, I've participated in the March for Babies several times (also known as WalkAmerica). My family was even a local Ambassador Family a couple of years ago, and I did newspaper and TV interviews, made speeches/public appearances, etc. And you're thinking, "so far this sounds like the love part but not the hate part", right?

Well, how can I sum it up? I think that the MOD must be looking at the growing problem of prematurity this way: There are some causes of prematurity we cannot prevent, cannot change, and do not even know why they occur. But some of the causes we CAN address, can help to change and make a difference. So we're going to pick our battles for the most part, working on those things that we know can be improved by our efforts. Consequently, so much of what they publicize has to do with educating pregnant women about "preventing preterm birth" as they put it.

While K and I were still serving as the Ambassador Parents, MOD invited us to the state volunteer conference. It was a night in a nice hotel, dinner on site with other volunteers from around the state, awards were given for money raised in the Walk that year, etc. We didn't have to speak at that dinner, and there was a big crowd so we were pretty anonymous. But it gave me a chance to see up close the "talking points" about what MOD is addressing, etc. And I came away feeling guilty and vaguely insulted or criticized. I know, that's just me being overly sensitive, but that's who I am.

In the text of the preemies' petition, it says this:
We urge federal and state policymakers to expand access to health coverage for women of childbearing age and to support smoking cessation programs as part of maternity care. Ok, so I guess that means if you had a preemie, you must have had no health care and/or have been smoking like a chimney, right?

Or how about this:
We call on hospitals and health care professionals to voluntarily assess c-sections and inductions that occur prior to 39 weeks gestation to ensure consistency with professional guidelines. Yeah, because I just chose to have my babies surgically removed from my body at 27 and 29 weeks, even though I should have waited longer. You know, avoid those pesky stretch marks by getting that baby out before anyone can even tell you're pregnant.

So often, on the surface at least, MOD seems to be conveying the message that the answer to the prematurity crisis lies in educating people, getting women adequate health care, and taking folic acid. Well you know what? Screw folic acid. Lot of %#%@& good it did me, huh? Obviously, those poor pitiful Moms of preemies must just not know any better than to do things that are risky, must not even have a doctor to care for them, must need our help, right?

Look, before anyone storms off in outrage, let me say this: I know that MOD has done and continues to do amazing work. Surfactant is a miracle, and it helped both of my boys survive, no question. And I agree with them that anything which causes a baby to be born too soon is something we'd like to change and eradicate. But I can't help feeling that, when I support MOD (speak for them, wear the shirts, sign the petition), I'm endorsing the public statement which (when translated) says: Hi, I'm a mom of 2 preemies because I did something wrong. Please help us so that no one ever has to make this kind of mistake again, or ever has to fail the way I did.

Told ya I was super sensitive. Please go sign the petition anyway, ok? Despite my insanity, sign it anyway. And support MOD in whatever ways you can. But look......when you do, just remember (and spread the word) that not all prematurity can be prevented, not all Moms of preemies did something to cause it to happen, which means it was not their fault! They'll still feel guilty (trust me on this one), but it will help them (ok, us) to be reminded that someone out there knows that what happened to our babies was out of our hands, not the result of ignorance or intent to do harm, but the result of a horrible disease for which there is no cure. That's how you can help fight the battle against prematurity........and you'll raise awareness of preeclampsia at the same time.


Lyndsey said...

(((((hugs))))) I didn't realize how limited their platform was. It truly is unfortunate and I completely understand why you would feel torn about supporting them. It makes it sound like us almost dying (or our children)was because of some easily preventable thing that we neglected to do. Hmmm.... It's kind of like the whole Autism Speaks thing--they do so much for the community that you have to back them to a point, but there's so much more to it than the picture they paint.

(((more hugs)))

Lowcountry Mom said...

Thanks, Lyndsey, but here's a representation of just how conflicted I am.......when I read what you wrote, I wanted to defend them, do you believe that? I know that there's more (in a general sense) to their platforms and statements, but in terms of specifics, it's as I represented.

It's like they make the disclaimer of "some causes of prematurity can't be prevented, BUT......." and then list the ways they want to help prevent it. And I'm all for it being prevented, as you can imagine. I just wish there was more recognition of the wide variety of prematurity causes, but I guess that's not as concrete and not as easy to show improvement in, right?

The Queen said...

Jen, glad to hear someone else feel the way I have secretly felt since I first started supporting the MOD when Bethanie was still a baby. I think what they do is great but don't really feel like what they are doing to PREVENT has anything to do with me and why I had to deliver early. That one part you quoted about no c-sections before 39 weeks, when I read that part when I signed the petition I started questioning myself and my doctor!! I had Elianna at 38 weeks, should I have waited another week.

I really, REALLY wish they would support more research for preventing preeclampsia! And maybe they do but don't "advertise" it so much.

~Denise~ said...

I think the issue lies with MOD being all about "stopping prematurity" in the spotlight, but when it comes to preeclampsia...the only cure is delivery, which causes prematurity for so many. It's a double-edged sword for the MOD I believe.

I 100% support the MOD and will continue to do so, but I struggle with the fact that what caused me to delivery early is not something on their 'public' agenda. The MOD has made terrific advances to help preemies, I'd just like to see more awareness & focus on the things they do know can cause prematurity. At times I feel like my, and so many others, situations are not validated as much as a PTL or whatnot.

My hope is that as preeclampsia awareness moves forward, it'll hit big time publicity-wise. It's just happening as fast as I'd like to see it.