Tuesday, May 27, 2008

Proposed U.S. Legislation for Stillbirth!

Dear Friends,

We have exciting news!

Representative Peter King from New York has introduced a bill to raise awareness about stillbirth that seeks to standardize the definition of stillbirth, and the method in which stillbirth data is collected, so there can be a national repository for stillbirth data with which to conduct comprehensive research efforts. The bill also authorizes a campaign to increase public awareness of good prenatal care practices that may decrease the risk of stillbirth, including monitoring movements during the last trimester. The proposed bill and supporting documents are attached.

Now we need your help! We are asking that you write a letter to your Representative asking them to co-sponsor this bill. The more co-sponsors the bill has, the more likely it is to pass. Please note, this is for the House of Representatives only. Do not contact your Senators at this time.

If you could do this within the next couple days to one week, we will be able to maximize the momentum Representative King has initiated!

Members of Congress receive hundreds of messages from their constituents every day. This communication is important to them because it helps them better understand what issues are important to those they serve. Through your requests, congressional leaders will support legislation, add their names as co-sponsors or even introduce legislation to assist constituents in their districts.

The compelling testimony provided by parents at First Candle’s 2007 Advocacy Day-on-the Hill is what prompted Representative King to introduce this important bill!

· The first step is to identify the Representative for the District you live in. If you already know that, or have had direct contact with him/her, you are one step ahead of the game!

· If you do not know who your Representative is, or if you do not have contact information, you can find that information at https://forms.house.gov by putting in your 9-digit zip code (if you do not know your 4 digit extension, you can get it at http://zip4.usps.com/zip4/welcome.jsp.) You will then be able link directly to your Representative’s website. There you will find all the information you need, as well as the ability to email directly to their office.

· Once you have the contact information, write your letter. We have provided a sample letter below, but encourage you to add your personal story where indicated. Personal stories always have a greater impact and are taken more seriously than form letters! Of course, you can write your own letter if you have the time or desire. Just remember to keep the statistics and information about the bill consistent with that of the sample letter.

· Sending a hard copy or email letter are both equally effective. If you are mailing a hard copy, feel free to send along the documents attached to this email. It is not a good idea to attach documents to email letters, as they will most likely be rejected. Do not let this discourage you from using email though, as the vast majority of constituent letters do not include supporting documentation. Your email letters can be sent directly through your Representative’s website.

· First Candle would very much appreciate knowing who you have sent a letter to. This way we can conduct follow-up if and when that becomes necessary. Simply send an email to jennifer.johnson@firstcandle.org with your name and the name of the representative or staffer you sent the letter to. Hard or email copies of your letters are also welcome!

· And finally . . . please share this email with anyone that you think would be interested in supporting this effort, including family, friends, your favorite support organizations, groups, websites, etc.

· If you have any questions regarding the bill or this process, feel free to contact Marianne Adezio at 703-741-7053 or madezio@golinharris.org

We thank you in advance for your prompt attention to this important matter! By working together, we stand to gain the most in our quest to spare families the devastation of stillbirth . . . in the belief that every baby should live.


The Board and Staff of First Candle

Sample Letter

Dear Representative ________________:

I am writing to ask you to co-sponsor legislation that would help the CDC and researchers better determine the risk factors associated with stillbirth and convey those risk factors to expectant parents.

House of Representative Bill 5979, the Stillbirth Awareness and Research Act of 2008, was introduced by Representative Peter King of New York in an effort to address the lack of standardized data collection nationally with regard to stillbirth.

Each year more than 25,000 babies in the United States are stillborn. More than 50 percent of these deaths occur in the last trimester of pregnancy and 15 percent occur during labor and delivery. Due to a lack of autopsy/investigation and inconsistencies in diagnosing these, more than 50 percent of all stillbirths remain unexplained.

With standardized investigation and reporting of these deaths, researchers would be better able to determine the risk factors. H.R. 5979 would both standardize the definition of stillbirth and the method in which data is collected, in order to create a national repository of stillbirth data to assist researchers in conducting comprehensive studies in to the causes of, and possible preventive strategies for, stillbirth. The bill also authorizes a public awareness campaign promoting good prenatal practices, including monitoring movements during the last trimester of pregnancy, to reduce the risk of stillbirth.

This legislation is important to me because (insert your personal story here)

Thank you so much for your consideration of my request.

(insert name and contact information here)

Certificate of Birth Resulting in Stillbirth- NEW YORK

Time is running out to pass the New York Certificate of Birth Resulting in Stillbirth -- Bill# A8960.

Legislative sessions end on June 23rd. We have less than 5 weeks left.

The Bill has continued to STALL in the Ways & Means committee (since January 29, 2008).

It is their responsibility to review bills and determine the financial impact on the state. 23 states have now passed similar bills and reported no negative fiscal impact. Instead, states have generated income via the certificate fees.

They know this. They need to be good stewards of their position and move this bill out of their committee.

The Senate passed the bill 58-1. They need to give the Assembly its turn.

Time is running out. Will you continue to help with the passage of this bill?

Go here: http://tinyurl.com/yqokqh

It will take less than 30 seconds to send an email to the Ways & Means Committee members. Join us in asking the committee members to move Bill A8960 out of their committee so it can come in front of
the full Assembly for a floor vote.

Pass this email to EVERYONE you know and ask them to show their support of the Certificate of Birth Resulting in Stillbirth Bill for you.

For every family that has faced the tragedy of a stillbirth; for every family that will face this tragedy ...help us pass the CBRS Bill. Thank you.


Sunday, May 4, 2008

Survey- Stillbirth & Neonatal Death

I am a bereaved parent who had a
stillbirth three years ago. I am currently
co-conducting a survey about medical bad news delivery
and the communications between patients and care
providers about their diagnosis. I am specifically
hoping to reach parents who have had a stillbirth,
neonatal death (death of a child within 28 days of
birth) or a pregnancy loss.
Click Here for Survey

We are hoping to learn more about this kind of
communication and offer insights to care-providers
about the effects of these interactions. Data
collected from this confidential survey will be used
for completion of a course project in the master's
program at San Francisco State University. The survey
is confidential and should take approximately 25
minutes to complete.

If you have any questions, I would be happy to
answer them. I can be reached by email at

I also have hard copies of the surveys and if you
send me an email with the street address, I would be
happy to mail them to you.

I send my sincere thanks for considering helping get
the word out about this study,

Suzanne Pullen
More about my story here