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

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

Friday, July 17, 2009

Newly Introduced Legislation will Support Education and Prevention Efforts for Stillbirth, SIDS and other Sudden, Unexpected Infant Deaths (SUID)

Hi Everyone-

I am writing you to ask for you to take 5 minutes today to support a very important piece of stillbirth/SIDS legislation that was introduced into Congress yesterday. As you may know, I traveled to DC twice in the last two years to advocate for stillbirth legislation -- some of you supported me in making those trips (thank you!!!). As a result of a visit I made (along with three other mothers and a doctor from First Candle) with a staffer from Obama's office (before he was president), a piece of legislation was drafted by his office. He became President before it could get any traction, but he hand-delivered it to Sen. Lautenberg and asked him to take it on. That revised bill was finally introduced yesterday, along with a companion bill in the House.

On behalf of the hundreds of families I have written about over the last four years, and in remembrance of Avery, I ask you to contact your Congressional Representatives (a total of three emails and/or phone calls) to implore them to support the Stillbirth and SUID Prevention, Education and Awareness Act of 2009 and become co-sponsors. The bill would expand activities to identify the causes of stillbirth, identify ways to prevent it in the future and increase education and awareness about the issue among healthcare providers and parents. Below are links:-To find out the contact info of your Rep/Senators by typing in your zip code. -A fact sheet about the bills-A sample letter you can cut and paste in an email to make it simple. Including your own story is also helpful!

In order for this bill to have a chance at passing, we need as many co-sponsors as possible. That means getting support from all over the country, so I am also asking you to email this to anyone else you think can help and/or post this on your web/social networking site. You can also just post the link to First Candle www.firstcandle.org.

Please take 5 minutes to show your support for the bill right now...early support is key at getting momentum going.

Thank you for reading this...and for considering my request. I don't usually ask people to take political action and I sometimes feel uncomfortable when others ask me to do so, so I can understand if you would rather not get involved. But if you want to and don't have the time today, please consider doing it as soon as you can.

With deep gratitude, Suzanne


Newly Introduced Legislation will Support Education and Prevention Efforts for Stillbirth, SIDS and other Sudden, Unexpected Infant Deaths (SUID)

First Candle is pleased to announce that the Stillbirth and SUID Prevention, Education and Awareness Act of 2009 was filed July 14 by Senator Frank Lautenberg, D-NJ. A companion bill was filed in the House by Frank Pallone, Jr., D-NJ-6. This bill would improve the collection of critical data to determine the causes of stillbirth SIDS and SUID, increase education and awareness about how to prevent these tragedies in the future and expand support services for families who have experienced a stillbirth, SIDS or SUID loss.

Every year there are more than 25,000 stillbirths in the United States. For more than half these deaths there is no known cause, leaving parents with more questions than answers as to why the baby died. The bill would expand activities to identify the causes of stillbirth, identify ways to prevent it in the future and increase education and awareness about the issue among healthcare providers and parents. In addition, there are more than 4,600 sudden unexpected infant deaths each year (including SIDS) and 200 sudden unexpected deaths of children between the ages of one and four. This bill encourages states to complete scene investigations to better understand why these children died, establishes a national database to track these deaths and identify risk factors to prevent them in the future, supports more comprehensive reviews and creates a national public awareness campaign to educate parents and caregivers.

We hope you will join us in supporting this legislation.

Please help by contacting your representative in the House and two Senators within the next week, urging them to co-sponsor this important bill.

The more co-sponsors the bill gets, the more likely it is to pass quickly through the House and Senate.

Participating in First Candle’s letter-writing campaign is easy!

Visit www.house.gov to get contact information for the Congressman in your District. You will need your 9-digit zip code. If you do not know your 4 digit extension, you can get it at http://www.z2systems.com/nps//servlet/DisplayLink?orgId=fc&emailId=306112&linkId=2591&targetUrl=http://zip4.usps.com/zip4/welcome.jsp.
You will then be able link directly to your Representative’s website.

Visit www.senate.gov to get contact information for your states two Senators. Simply select your state from the drop down menu to connect to your Senators’ websites.

We encourage you to call your representatives directly, or set up an appointment to meet with them face-to-face. Writing a letter or sending an email can be effective as well. Emails can be sent directly through your representatives’ websites.

We have provided a Fact Sheet about the bill, as well as a sample letter to help guide you.
Whether you are writing a letter or speaking with your representatives directly, be sure to include your personal story.

First Candle would love to receive a copy of your letter or an email detailing your conversation with your representatives for our files.

Members of Congress rely on input from their constituents to help them better understand what issues are important to those they serve. Help give our babies a voice!

Please feel free to contact Laura Reno, 800.221.7437 or laura.reno@firstcandle.org with any questions you may have.

5 comments:

Laura said...

Thank you for this information... I am glad that you are still updating this site- I sent in my info and was worried that you weren't doing it anymore. Thanks for all you are doing!
Laura D.
Momentsofpause.blogspot.com

Sympathy Gifts said...

I had no idea about this Bill. I have gone to the links and am investigating who to send info. to now. What a worthwhile Bill for American families. We work in part with the children's industry and have recently rallied to change a law that went into effect last year. They received so many calls and letters that they made changes to the law. The people really do have a voice if we yell loud enough.

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