Monday, February 11, 2008

MISSing angels bill

I'm officially no longer a spectator when it comes to politics and policy. As much as I've always enjoyed following the national politics, I've never really been much into State level politics, for obvious reasons (too many conservative douchebags). Recently it's all changed and it's been an interesting experience.

I met up with midwest mom who experienced the stillbirth of her son in 2005, and we're talking to State Senators trying to get them to pass a MISSing Angels bill. Currently, a mother experiencing a stillbirth (defined as a birth after 20 weeks gestation) only receive a death certificate. A MISSing Angels bill would give us a 'birth certificate resulting in stillbirth' from the State. Many women who find themselves in my situation are surprised and upset that their birth isn't recognized but the death is. How does someone die if they are not born?

Let me just say that I personally don't feel particularly offended about not receiving a birth certificate for Myles, but I can empathize and understand why women would want their birth event recognized as not just negative (death), and would want that birth certificate as a positive memento and an affirmation that they did give birth. Don't get me wrong, If I could get a birth certificate for Myles, I would, but I wanted to make clear that this is not the primary reason I'm pushing the bill. The reason I'm putting time and energy to this Bill is that in two of the 21 States that have MISSing Angels bills also give a tax credit to families experiencing a stillbirth, much like I would've received a dependent tax credit if Myles had lived only a second outside the womb.

I'm for this provision first, because I'm a sociologist and I know that many people experience financial hardship during the birth of a child; second, because I'm personally feeling this financial hardship and it's hard enough to get through my days without stressing out about medical bills and debt and tax returns, etc., etc. It's been awful. Third, it also, in my mind, falls under a similar umbrella as Family Medical Leave (FMLA) which is my policy specialization area in my research as a Sociologist.

It only makes logical sense to me that parents are able to get a tax credit for a child they carried. They are a 'dependent' in every sense of the word, I spent $200 on cloth diapers for Myles thinking they'd save me money in the long run. What a cruel joke, right? And B and I (in our master plan that life diverted) had always counted on Myles' return for medical bills. The preterm labor had me freaked out enough about bills, now we're screwed, you know?

So, my MISS friend and I've been walking around the capital, canvassing the Senators on the HHS committee, we've visited with 6 or 7 Senators telling them about our sons, Myles and Carter, and informing them about Sudden Antenatal Death Syndrome (SADS)/stillbirth. I was amazed after I had Myles that stillbirth is so common. In the US, roughly 30,000 women experience stillbirth a year, it is 10 times more common than SIDS, yet the subject gets little recognition. Many cases are like mine, the causes are unknown (although there are suspects, we'll never know what happened to Myles) and very little research is conducted on it. It's been infuriating to me as I'm all about research. Think about it, I'm sociologist doing research in maternal infant health, I can't believe there is so little out there, and how little I knew even though I know a lot about maternal infant health. All I did on my bedrest when I had preterm labor was research it (but there is a lot more out there on preterm labor, even though the causes are still largely a mystery, it's an issue on the radar unlike SADS).

I guess what I'm saying is this is an issue that people need to be more aware of, it is an issue that needs funding for research. I feel every woman should be aware of SADS, even if it is only so they aren't completely blindsided like I was.

Just think of how many people were impacted by Myles' death? And I don't know about you all, but I really was completely blindsided. The fact that he could die had never crossed my mind. Not really. I thought the worse case scenario was preterm labor, I was victoriously celebrating my 37th week. I remember saying numerous times, through everything, "I never worry about Myles," and I didn't, because his heartbeat was always so strong, he always kicked like crazy, even during preterm labor, he always appeared so strong. He never once showed any indication of distress, and I had three ultrasounds and four non-stress tests?!

And after having the rug pulled out from me, so violently, I just wish I were more aware. I can't describe that feeling I felt when it really sank in he was gone. I'll never be able to describe it. And I hope none of you ever know what that is like, although life is cruel and the realities of that spare none.

So, anyway, this is what I've been doing for Myles. I think I found my new direction, I think I found something to strive for. And I think I have something to funnel my grief into. Telling my story, raising awareness, trying to make the topic less taboo. It's been weird and odd, and I'm so glad my MISS friend is so prepared (she has handouts, etc., she's so awesome). We've got this little 15 minute 'schtick' we do with each Senator as we try to convince them that this is a bill that needs sponsored and co-sponsored and pushed through committee and discussed on the floor.

So, we have a lot of work to do, and we're looking for small victories. Right now, none of the Senators have completely committed to sponsoring it, but it has been sent it to drafters.

Anyway, this is it. I wanted to share it, partly because I might be asking for support from all of you to call your Senators to support this bill if it does come up for debate, and because I wanted you to know that I think I found what I needed to find. That different road I needed to take. And I think it's a good thing.


c. said...

I am so inspired by your motivation. I can completely relate to wanting to raise awareness about stillbirth. I want this to be the direction my life takes from this point on. I, too, felt completely blindsided by my son's stillbirth. Learning about it and having to endure his death and then his birth was the most traumatic experience I have ever gone through. It INFURIATES me that stillbirth was never mentioned. Not during either of my 2 pregnancies that resulted in a 2 live births. Not during my miscarriage in Jan.2007. Surely, not during my pregnancy with C@llum that resulted in his stillbirth on November 1, 2007. In an effort to honour my son and to ensure his memory lives on, I want to speak publicly about the real possibility of stillbirth. I want to approach our provincial health authority and speak to pregnant couples, possibly when they attend the new baby parenting course offered at the hospitals here. Maybe I can speak about kick counting, maybe that's how I can convince them that this discussion HAS to take place. I know that most of them will probably view me as the grim reeper, but I don't care. If the only thing they remember is C@llum's story, that is all that matters to me. And surely, if the 1% that is affected by stillbirth can feel some semblance of comfort knowing that other women/couples have been here before, then talking about it has undoubtedly served its purpose.

I feel so very strongly that I cannot know about stillbirth and not try to help mothers like me. It's just not possible.

I wish the MISSing Angels bill was an option here in Canada. Your efforts are so inspiring. I am so moved by what you have done and what you hope to do for Myles in the future. I wish you all the best, anarchist mom.

(PS I found your blog through Mi Isla Sola and today is the day I've decided to de-lurk myself.)

Paige said...

I wish you all the best in your pursuit of the bill in your state. I am working on passing the same bill in New York. We have made progress but the journey can be long for some states.

Thank you for what your are undertaking for all of your children and those to come.

For our child, Samantha 1/26/03