How to Use the Directory

Welcome to the Miscarriage, Stillbirth, and Infant Loss Directory. This blog is maintained by volunteers to act like a "telephone book" for blogs dealing with the loss of a baby. It is open to anyone who has ever lost a baby in any way - we do not discriminate by age of your baby or circumstance of your loss. If you think you belong here, then we think you belong here.

When you submit your blog, it is manually added to the list, so it may take some time for it to appear on the list. When you submit your information as requested below, it is easier to spot those emails that have been redirected into the spam mail.

Blogs are listed by category of loss. This is to help you find blogs that deal with circumstances that may be similar to yours. That being said, it can be a moving and healing experience to read the blogs of people who's loss is not similar to yours. You are welcome to read any of the blogs listed here.

Though there could be literally thousands of categories of loss, we have created 4 broad categories: before 20 weeks, after 20 weeks, after birth, and medical termination. Please note that most blogs dealing with extreme prematurity are listed in the "after birth" category even though the gestational age might suggest a different category.

As a warning to those feeling particularly fragile, many of the blogs listed here discuss living children or subsequent pregnancies. In the sidebar links, those blogs are usually marked with an asterisk(*). However, the circumstances of individual bloggers will change, and sometimes the listings do not get updated. It is possible to encounter pictures of living children or pregnant bellies on the blogs listed here.

We also have a list of resources (books), online links, and online publications that you may find useful. Scroll all the way to the bottom of the page to see the full listing of links.

We are so sorry the loss of a beloved child has brought you here. We hope that you will find some solace within the community that has gathered.
Please help us set up this resource for grieving families by:

Welcome

A. Submitting your blog information
(Email Subject: Please Add My Blog)
  • The link to your blog
  • The title of your blog
  • The topic of your blog (see sidebar - Personal Blogs)
  • If your blog discusses living children or subsequent pregnancy after loss

B. Submitting links to helpful web resources
(Email Subject: Please Add This Link)

C. Submitting titles of helpful reading materials or videos/films
(Email Subject: Please Add This Resource)

D. Adding a link to this site from your blog

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Saturday, August 16, 2008

MISS Foundation Update

A message from MISS Foundation Legislative Liaisons, Richard May and Kelli Montgomery re: Stillbirth Collaborative Research Network‏

Dear Friends of the MISS Foundation,

The following is an update on both the stillbirth research, the politics regarding the appropriations for stillbirth research through the NICHD and the NIH and the grassroots advocacy for MISS members to execute to help address stillbirths in America.

Regarding the Stillbirth Collaborative Research Network pioneering five-year research study on stillbirths, I recently spoke with the lead research scientist Dr. Uma Reddy and have prepared an update on the status of their research.

The 500 stillbirths necessary for the study is about to be complete. As a consequence, the SCRN will need two more years and funding to complete the analysis from the 500 stillbirths researched.

They have already received a small funding extension as the appropriations from NICHD has been spent from the 2002 $3 million appropriations. The stillbirth research will help determine how stillbirths are reported, to find out better ways to determine the cause, and, better yet, to find better ways to prevent future stillbirths.

The research has also prompted the necessity and funding to:
1. Complete the analysis from the current study.
2. Conduct a follow up study from the mothers and parents of the stillbirths regarding their next pregnancy and/or their psychological state from their stillbirth and the best ways to address both.
3. Conduct a comprehensive study of 10,000 women in their first pregnancies to better predict the stillbirth possibility and/or risks of stillbirths.

Regarding the politics of stillbirth appropriations, the following is generated from a series of conversations with congressional appropriations staff members.

In 2007, the NIH Appropriations bills (both Senate and House) inserted legislative language directing the National Institute of Health (NIH) through the National Institute of Child Health & Human Development (NICHD) Agency to dedicate funds to continue the research and analysis regarding stillbirths in America. The language was inserted, in part, due to the great grassroots advocacy from MISS members throughout America supporting further stillbirth research appropriations from the U.S. Congress. The problem, though, is that President Bush vetoed the bill and threatened the veto again this year forcing Congress to pass a continuing resolution to appropriate the NIH and NICHD at the same levels as 2006.

Therefore, the congressional directive was never enacted and the stillbirth research is coming to a close needing funds for the next level of research,analysis and action. We are waiting until next year to put the pressure on Congress through the MISS membership and grassroots advocacy when we have a President who is much more sympathetic to the stillbirth concerns. Both Sen. McCain and Sen. Obama have expressed their public desire and/or action in supporting such research and not vetoing the appropriations thereof.

In the meantime, we need the commitment of all of those Congress members running for re-election to support the continued research and analysis of this pioneering study. We need all MISS members to contact their U.S. Senators and Congress members NOW during the upcoming election season asking for their support to insert NIH/NICHD appropriations directive language supporting the continued funding of the Stillbirth Research Collaborative Network's research, analysis and recommendations.


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Here are the key points in a sample letter that you may use or refer to:

Dear Senator/Congress Member,

I am your constituent requesting your support for NIH/NICHD appropriations of the Stillbirth Collaborative Research Network's continued stillbirth research project through appropriations and appropriations directive language instructing the NIH/NICHD to fully fund the continued SCRN's Stillbirth Research Project.

Stillbirths are the number one cause of infant deaths in America. According to the Bureau of Vital Statistics and the Center for Disease Control, stillbirths account for 25,000 - 30,000 infant deaths in America every year. Stillbirths account for 10 times the number of deaths than SIDS yet stillbirths are still unknown, undocumented and not properly addressed by the medical community or our public health system in America. In 2003, Congress appropriated a $3 million pioneering stillbirth study by the Stillbirth Collaborative Research Network through the NICHD under the NIH. Now, that study has been completed and Congress needs to address its follow-up and further appropriations to analyze and address the research conclusions. Therefore, as your constituent, I am asking you to support the further and continued NIH/NICHD appropriations of the Stillbirth Collaborative Research Network's stillbirth research project through appropriations and appropriations directive language instructing the NIH/NICHD to fully fund the continued stillbirth research and analysis.

As a grieving parent whose family has suffered a tremendous loss through stillbirth, I await your response to help research and prevent the number one killer of our children in America.

Thank you on behalf of the MISS Foundation,

Name

Address (to prove you are a constituent)

Phone Number

1 comment:

Beruriah said...

Ok, I am glad for this research, and will send a letter. This phrase though, "The 500 stillbirths necessary for the study is about to be complete" (setting aside the grammatical issue) stops me cold. We want the research, but wish there weren't so great a need for it.