Monday, October 6, 2008

S.3142 and H.R. 5979 regarding Stillbirth

Last year, or any of the years previous, I didn't even know that Pregnancy and Infant Loss had it's own day, let alone a whole month. I found out, perhaps not surprisingly, from a lovely NICU nurse.

This year, the wonderful Antigone has spearheaded a movement to raise awareness about the day itself, and in addition, Senate Bill 3142: "Preventing Stillbirth and SUID Act of 2008." (The complimentary, but not identical bill, in the House is H.R. 5979. Those of you who remember School House Rock know that a bill must pass both the House and Senate before going to the President to be signed into law.) I know we're all desperately trying to wrap our heads around the subprime mortgage crisis (funny yet explanatory slide show here), cramming small bills into our mattresses, burning the window trim, and fashioning clothing from our draperies, but it would be nice if on Oct. 15th -- for a few minutes of one day -- the esteemed Lawmakers could focus on this issue.

I'm not hoping, I'm just sayin'.

(Also, might I add here, I explain some of the differences between these two bills below, but the Senate Bill is being sponsored by none other the the IL-D, Senator Barack Obama. Talk about the possibility of national awareness. So instead of only calling about the House Bill as the way below call to action suggests, I'm going to plug the senate bill by calling my senator AND the Obama HQ, and I encourage you to do the same -- in addition to calling your representative about the House Bill.)

I've been hesitating putting the whole shabang on the blog here until I read through the Senate bill itself, and I finally found a few minutes to do so. (Let's see if I can drum up a few more minutes and write about the damn thing.) I have some issues, which I'll relay below, but nothing that shouldn't be addressed to my (or your) senator when calling to voice my (your) support.

I'm not a stillbirth mom, but I could very well have been, and bills like this in the future may help moms like me. Let me explain.

For starts, the doctors told us on numerous occasions that Maddy's problems were so severe, that she really shouldn't have made it to term, let alone six days after. Which means, my six-day NICU experience was separated by the familiar ultrasound-with-no-heartbeat experience by the flimsiest of dividers. I could've been there.

As it is, I'm not, and Maddy's situation would not be applicable, but the results of this bill could very well have helped our doctors find a reason or at least eliminate some. The crux of the bill is a registry of sorts for that will amass information on stillbirth by establishing protocols for autopsies and the placenta (!). Other standardized factors of post mortem can be entered into this database (and here I'm assuming these would be questions posed the mother and doctor in addition to a pathology report, OR in the event that the parents decline an autopsy for whatever reason). The bill also places emphasis on "awareness" -- which may become more useful as the database increases. But I'm also assuming "awareness" includes PSA's on the database itself so that should a mother find herself in this unfortunate position, she (or her doctor) may already be aware that they help the greater cause (so to speak) by agreeing to participate in supplying information. My hope is that this becomes like organ donation, where people are less squeamish about autopsies knowing that something good may eventually come out of it all -- even if it's not their child's case specifically.

How would this have helped me? There would be an enormous pile of steaming hot data to compare my experience with. Our babies may have looked remarkably different on the inside, but what if our placentas (palcentae?) were not dissimilar? What if we both experienced a similar, unremarkable symptom at 25 weeks? Furthermore, the hope is that this study will actually find a link (or two) and suggest some diagnostic tools and safeguards for all women. You know by now my serious reservations on ultrasound technology as a diagnostic tool during pregnancy, but what if there was something else? What if someone designed a test of some sort for the 20th or 25th week to check for infection? Or realized that at week 28 they should zoom in on an particular organ that had been determined to show the first signs of distress? Anything??

What I like about the Senate bill: There's much to like. For starts, I like that the tone indicates we know a bit about stillbirth, but most people in this situation are left with no answers. Which means there's work to do. I like the coordinated effort and the acknowledgment that simple public awareness is needed and deserves funding in and of itself.

What I'm not crazy about: For starts, passing the buck on the defintion of "stillbirth." I'll go into this more on the House Bill (see below) but this, right here, is where things could get really sticky.

Also, with all due respect and sympathy to those who have lost children to SUID (including SIDS), I'm not sure I like that cause bundled with this bill. The two may very well be linked, but I think stillbirth needs a stand-alone bill, with a dedicated money pile and focus before we start making links like this. Not to mention, I think most parents are now aware of problems like SIDS and the more obvious risk factors (the Back to Sleep campaign has been quite successful). Are there still questions to be answered in this arena? You bet -- I'm sure there's nothing quite as devastating as finding your three month old dead one morning, even though you followed all the rules. Nothing like an ad campaign to label you an imbecile who was clueless about crib bumpers and tummy sleeping when in reality, your child's death remains a mystery. But I believe both of these issues need their own champions -- they are both important enough.

Finally, the wonderfully smart Julia alerted me that the NIH has an ongoing, long-term stillbirth study that is still in progress. It would probably behoove not only the authors of this bill, but the ultimate implementers, if this study were completed and in hand before moving forward.

As for the House Bill: I like that the House Bill stays focussed on Stillbirth. However, I'm a bit confounded that they're trying to push through the Certificate of Birth Resulting in Stillbrith in this version. This, my friends, is where things get hairy. It's not that I don't think parents deserve and need this piece of paper, because by God, they certainly do. (They deserve a helluva lot more, but validation of their children's existence is a nice start.) But no one to date has been able to settle on a definition here that doesn't open the door to the anti-choice movement using the bill as case-law and taking things in another direction entirely. As I commented on Antigone's blog, I'm distressed that deadbabies have become political footballs like this, but someone smart (like Julia!) needs to craft this language in a way that is careful and meaningful. Certificate of Birth Resulting in Stillbirth bills have failed on the state level in NY and NM because pro-choice representatives (and in NM, the governor) found the language vague enough to be dangerous.

I'm troubled because I would hate to see the idea of a national database torpedoed because people can't agree on the vocabulary behind and for this certificate. On the other hand, I'm somewhat cheered because this House Bill is co-sponsored by some very progressive, pro-choice representatives, so maybe -- just maybe -- they will be the ones to knit together just the right adjectives and terminology to make sense, and validate the children involved without turning them into launching pads for someone else's cause de jour.

In sum: database good. Extraneous stuff possibly bad, would like people to stay focussed on the issue at hand.

*******************

I now ask if you haven't already discussed the bill OR NATIONAL PREGNANCY AND INFANT LOSS AWARENESS MONTH/DAY on your blog/website/myspace page that you please take a moment for us and you to state the following as per Antigone:

October 15th is National Pregnancy and Infant Loss Remembrance Day in the United States. More than 25,000 children are stillborn in the United States every year leaving mothers, entire families and communities devastated. Estimates of the rate of occurrence of stillbirth make it at least as common as autism.

Stillbirth is not an intractable problem. Greater research would likely significantly reduce its incidence, but good research requires good data. H.R. 5979: Stillbirth Awareness and Research Act is under consideration by Congress. This proposed bill would standardize stillbirth investigation and diagnosis, thus providing more data for the needed research. Better research means fewer children born still.

On October 15th, remember the thousands of unfinished children lost and the families who remain to grieve them. Honor them by taking action. Let's help pass H.R. 5979.

Action Steps:

Step 1. Use Your Blog to Enlist Others
-Copy the contents of this entire post and publish it on your blog immediately.

GOAL: Enlist 10 of your readers to spread the word

Step 2. Use Your E-mail to Enlist Others
-E-mail 5 bloggers and ask them (nicely and in an unspammy way) to publish these action steps on their blog. Consider contacting celebrity bloggers, political bloggers, medical bloggers, or bloggers who are not part of your reading community.

GOAL: Enlist 3 bloggers outside of your normal blog sphere to spread the word in other online communities.

Step 3. Help Pass the Stillbirth Awareness and Research Act
-By October 15th, publish a post on your blog supporting H.R. 5979 Stillbirth Awareness and Research Act. For maximum impact, title your post: "Stillbirth Awareness and Research Act."

9 comments:

charmedgirl said...

wow, thanks so much for writing this out. sometimes when it comes to political stuff my brain shuts off.

Dr. Joanne Cacciatore said...

With all due respect, I have to disagree with your commentary about the vague language in NY and NM. The bill has been opposed in every state, even those where the language was actually crafted by prochoice Dems. Sadly, women who have experienced the tragedy and trauma of the stillbirths of their babies are being used as political pawns in the minefield of rhetoric. I am happy to share more information and details if you're interested.

Tash said...

I'd welcome it. I know in both states I mentioned it was crafted by majority Democratic committees and legislatures (and in NM passed but then vetoed by the Democratic governor) so it had to be fairly good in this regard. I also know in some states it has passed already. But for these issues ultimately not to pass there must have been something that raised a red flag by democrats with the power to do so. I certainly stand by my contention that this certificate issue (and definition) needs extremely careful consideration, and I agree wholeheartedly with your point that it is sad deceased children and their parents are being used a political football in this fashion.

Thank you for reading and commenting.

Alice said...

Thanks for this. Even though I'm not in your country it is interesting. I think it is wonderful of you to give so much time and though to this.

With best wishes,

Alice

luna said...

thanks for the informative overview and analysis, tash!

Anonymous said...
This comment has been removed by a blog administrator.
Tash said...

Anon, I appreciate your well documented concern. If you read my post carefully, you'll see that I said I think SIDS warrants a bill unto itself. In the future, if you'd like to comment here in such a long and technical fashion, please do so in a way that corresponds with the post at hand. Thank you.

Kristina said...

Interesting to know.

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