It is impossible to say how frustrating the last five years have been since my son's stillbirth. If I hear one more time that "stillbirth is soooooooooooo rare" and that it happens "for no known cause", I am absolutely going to scream. Now, granted, my perspective is just random samples of bits and pieces of the world, but let me tell you a few things:

-I had PCOS when I got pregnant, but was never told that might complicate things with my son's birth. And after his stillbirth, no one would say that PCOS had anything to do with it. YET, one out of every two stillbirth mothers I meet -- and I've met thousands of them by now -- well, guess what? They have PCOS, too! hmmmm?

-After hearing a zillion times about how stillbirth was so rare, I came to find out that my Nona had a stillborn, my husband's sister's firstborn was stillborn, one of my husband's brother's kids was stillborn. Rare? Four in one family? hmmmmm.

-Then I found out that according to reports that actually get filed with the Center for Disease Control (CDC) and National Institutes of Health (NIH), that ONE IN 200 pregnancies ends in stillbirth. 26,000 per year in the U.S. alone. hmmmm.

-THEN I found out that the way those reports to the CDC and NIH are filed -- well, it varies from state to state. So it is possible that 26,000 is LOW because there are some states that don't bother from county to county to see that there is protocol for reporting. Some places just chalk those stillborns up to "rarity" and the families and their dead children vanish into thin air. Right. Rare?

GIVE ME A BREAK!!!!!!!! So FINALLY after years of screaming and yell and bugging and publishing and talking and studying and writing, the MISS Foundation was heard. And the NIH has FINALLY launched a $3 million study to try and get a handle on stillbirth. NOW HERE IS YOUR CHANCE TO GIVE VOICE TO YOUR EXPERIENCE AND TELL THEM HOW UN-RARE WE ARE!!!!! PLEASE go to the site below and participate:

http://www.momstudy.com

From their website:

The study of Maternal Observations and Memories of Stillbirth (MOMS) is being done to provide researchers, medical professionals, and women with a better understanding of stillbirths and how they can be prevented. The results will also provide insight to professionals on compassionate care and support to families experiencing this tragedy. Every year, more than four million women worldwide experience the stillbirth of a child, and the vast majority are preventable.

All women throughout the world who have experienced pregnancy and birth, whether it ended with a stillborn baby or a live baby, are invited to share their story with the researchers by completing an interactive questionnaire. Women who have not experienced a stillbirth can contribute by helping researchers identify possible risk factors that could contribute to stillbirth.

Your participation is sincerely appreciated.

A recent notice from them:

A notice regarding the MOMS Study: We're about 1 ,000 respondents short on live birth responses for the MOMS Study- we need people who have children and whose children have not died. Can you ask your friends, family, and colleagues to help with the study?  We need to know what positive outcomes look like and how they differentiate from women who have stillborns, if at all. It doesn't matter how long ago they had their baby!

All the data is USEFUL!  Please go to http://www.momstudy.com to help or to find out more about the MOMS Study! Thank you!