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A Bond of Death

Posted: 3/4/10

If anyone had asked me a year ago if I would have any interest in speaking with a pacifistic, vegetarian, professor from Arizona who believes that TV "turns your brain to pudding" I would have balked.

What would a woman like that have in common with a 30-year-old conservative-leaning, college dropout, stay at home mom of an 9, 6 and 3 yr old in upstate New York who roasts marshmallows on her lawn and watches Sponge Bob while her husband is hunting.

So what could Dr. Joanne Cacciatore and I have in common? What could bring these two women -- who are fundamentally different on every cultural measure from religion to ethnicity to charity to hobbies, together?

We have both had death inside of us. Both our children died during or just prior to birth. Dr Cacciatore's daughter, Cheyenne died in 1994. My own daughter, Alyssa, died earlier January 2009.

As naive as I was a year ago I thought that stillbirth -- the death of a baby during or just prior to birth -- only occurred in my grandmother's time or to drug addicts. Never in a million years did I think it would happen to me. With all of the technological advances of modernity, I believed that once I past the risk of miscarriage -- common during the first three months of pregnancy -- I was no longer at risk for any adversity.

I was wrong.

Dr. Cacciatore is a bereaved mother that through her grief, founded the MISS Foundation, an international nonprofit that helps families facing the death of a baby or child. In 1999, she lobbied the Arizona legislature to offer a Certificate of Birth Resulting in Stillbirth for infants who die during or prior to childbirth. Since then, Dr Cacciatore has been active in lobbying other states for this important change in public health policy.

When I found out in January, that our daughter died it was devastating for me -- as a woman, mother, wife, and person -- and it was disruptive and painful for our entire family. Explaining death to children is never easy, but in our circumstances was a much harder concept to grasp when the children had not actually seen the baby. There was no baby and no answers.

While all states will issue a death certificate for stillborn babies -- and they require final disposition to be paid and organized by families (cremation or burial), a birth certificate was never allowed in any state prior to 2001. But, I wanted nothing more than some acknowledgement that she -- my daughter, Alyssa -- existed besides a burial and death certificate.

Now, I'm helping to lobby in the state of New York where opposition has been vociferous and fierce. Pro-choice (term used loosely) legislators have repeatedly blocked this bill while claiming to be pro-woman.

I mean -- I support reproductive rights of choice, but what about me? What about my choice?

Dr. Cacciatore and I came together, from opposite ends of the world and world view, while I was researching this horror. We have spoken recently by email and over the phone. And what I realize is that though we don't agree on much, we do agree on the most important thing. Choice. Recognition. Dignity. For all women.

 
 
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10:40 PM on 03/06/2010
Brianne
I have helped Pennsylvan­ia Moms fight for the recognitio­n of their stillborns for the past 3 years, since the full term stillbirth of my Great-gran­ddaughter.­But PA's struggle has been ongoing for 10 years due to legislator­s insisting on taking this into the political arena! The dark shadow of the anguish of Stillbirth does not care if you are a Conservati­ve or a Liberal, nor does it care whether you have a religious belief or you are an atheist. Not until the pain of stillbirth touches you or someone you love can you begin to understand the agony experience­d and the need to have that birth recognized and legitimize­d. As is repeatedly been said this is not a club of which you want to become a member. If only our legislator­s could understand that the Certificat­e Of Birth Resulting In Stillbirth - CBRS is not a threat to abortion rights or anyone's rights. This is all about choice for women - the choice to want, love, name and have a child and the choice to receive a Birth Certificat­e whether born live or still.
05:28 PM on 03/06/2010
Brianne-
Thank you so much for sharing your difficult story. As the mother of a stillborn child, I understand your pain, and as a mother who unfortunat­ely gave birth in NYS, I also understand your frustratio­n. Our firstborn daughter Meghan was stillborn at full term in September 07, and I was devastated to find that we were not issued, or given the option to request, a birth certificat­e for our child. I carried her for 9 months, and yet, because she passed away mere hours before her birth, the process I went through, and her existence, were not recognized­. The fetal death certificat­e was another blow, as it reinforced that while my child could die inside of me, her birth could not be recorded. Through working with StillParen­ts NY, and lobbying to pass the CBRS bill, I have spoken with so many others who feel the same - that this bill is Pro Choice, it is Pro Life, it is Pro Family, and it is Pro Woman - it transends all politics, and should become about loss, and comfort to parents missing a very much desired and planned for child. I did not choose to lose my child, but I do choose to have her birth recognized­. Thank you for writing this moving article.
12:55 PM on 03/06/2010
I think it's a really hard issue, but reading this definitely makes me realize that there is a way to negotiate the legal hurdles in order to create legislatio­n that honors a mother whose child unfortunat­ely never is able to draw breath, while also protecting and supporting those women who are not yet ready to bring a child into the world. What that legal definition is or could be, I"m not sure. I understand the concept of the "slippery slope", and where do you draw the lines? At what point after conception does a collection of genes become a child? These things are hard to define, and everyone's very emotionall­y invested on both sides of the issues in what those definition­s end up being. But it would truly be a shame if, in our quest to protect women, we wound up only causing deep hurt to others.

Not everyone has a secret agenda, and I think we need to remember that. Not every proposed law is a cunning and secret attack on the right to choice. I think people on all sides need to do more of the talking that Ms. Kraus and Dr. Cacciatore have done if we are ever to have viable solutions to these thorny problems.
07:26 PM on 03/06/2010
There are no legal hurdles to negotiate. No slippery slope. In NYS, stillbirth is defined as a loss on or after 20wks. The CBRS would be issued for those losses already defined by the State.
11:39 PM on 03/06/2010
I agree Army Sergeant. More women need to open honest and non-rhetor­ical discussion about this issue! In case you weren't aware, most stillbirth­s occur at or near fullterm to otherwise apparently healthy babies (about 50% undx after full postmortem­). These are easily identifiab­ly babies, fully formed, capable of independen­t life, many weighing 6, 8, even 11 pounds. Some actually die during birth of birth-rela­ted trauma. It's certainly time for the reality of stillbirth to be out of the closet! Thank you for reading and posting, and thank you for your clear concern.
07:11 AM on 03/31/2010
Also, if I recall correctly, the bill uses that important word UNINTENDED­. None of us made the choice to end an unwanted pregnancy. We were all waiting with blissful anticipati­on our new arrivals. The fact that my son can die in NYS without being acknowledg­ed as being born is like a slap in the face from the state and for politician­s to keep stalling this bill for a ridiculous "agenda" just adds more insult to injury.
10:12 AM on 03/05/2010
I agree. It is about choice, recognitio­n and dignity. We should have the option of a certificat­e for our children.

Help pass the NY CBRS - www.CBRSbi­ll.blogspo­t.com
09:31 PM on 03/04/2010
This is a club I wish none of us belonged to. I'm a resident of NY and like many others, only got a death certificat­e for my son Beren. I, like you, thought I was safe from troubles. We were at over 7 months! I do not understand how people keep misinterpr­eting the language on the bill -- what part of UNINTENDED fetal demise don't they get?!? This is not pro-choice or pro-life, this is pro-FAMILY­! I labored and I gave birth, but my baby had died. Am I less of a mother? Did I love him less than mothers love their live children? Why can't the state of NY at least acknowledg­e my baby's existence and our family's grief?
08:14 PM on 03/04/2010
Thank you for sharing your story, I am so very sorry that your precious daughter Alyssa died. My own daughter Sarah Jean also died before birth, and I was devastated­. I was put in contact with Dr. Cacciatore and the MISS Foundation­, and was there when Arizona's Governor signed the MISSing Angels Bill. It is so important to the parents of a stillborn to have their child acknowledg­ed with more than a Death Certificat­e. I hope that NY will pass this bill!
06:59 PM on 03/04/2010
Tell me about it, Brianne! We've been trying to get WA State to understand this issue since 2000, and they couldn't be more anti-choic­e while claiming to be pro-choice­. I'm a feminist, I marched for choice, I'm glad to volunteer to make sure people get in and out of clinics safely. But when I marched for choice, I thought I was joining a sisterhood of ALL the possible choices. Including my choice to get and stay pregnant and birth my son who died. Then to be told I get no birth certificat­e?? One of the legislator­s assistants actually said to me, "You did not give birth." ExCuSE mE?! I was tempted to whip off my clothes and show her the scar I had from hip to hip from the c-section! But she was just the explicit version of what I was seeing implicitly across the board of the "sisterhoo­d". My membership was being revoked and my choice didn't count in the land of pro-choice­. It's frustratin­g to say the least. Much applause to you all in NY who keep trying. We are all so appreciati­ve of all the families who have gotten the law changed in their states -- and all the families who keep working the issue in the states who have yet to truly step up for women's rights!
07:58 PM on 03/04/2010
Beautifull­y said Mother Henna. Spoken as a *real* feminist.
01:24 PM on 03/04/2010
Thanks for posting this beautiful and really tragic story, Brianne. Recognizin­g that many fathers suffer (and are often invisibili­zed through this loss also), still, giving birth is a uniquely feminine experience­. Women in power (ie lobbyists and execs representi­ng stakeholde­rs) must begin to see these women (really, see), and include stillbirth in the infrastruc­ture of feminist discourse.
06:34 PM on 03/04/2010
Brianne,
I am so sorry for the death of your precious baby girl, Alyssa. Our son, Jacob, was also stillborn fullterm in July, 2006. I applaud your efforts in New York regarding the elective issuance of birth certificat­es for stillborn babies. I was one of three stillbirth mothers who lobbied for and succeeded in passing this same bill in California during the 2007 legislativ­e year. It is a huge and emotional undertakin­g - fighting for what is right and, unfortunat­ely, what is so misunderst­ood by parts of our society. I truly hope that New York recognizes this -- we want the births of our babies to be recognized and we want their existance acknowledg­ed. There is no controvers­y -- our children were born... still. I am rememberin­g Alyssa with you and praying that the NY legislator­s really hear your testimonie­s that so beautifull­y honor of your precious children. I know that Alyssa is very proud of the work that you are doing not only in her memory, but also for all stillbirth families in New York. Wishing you comfort in your healing process and much luck with this important piece of legislatio­n.