Welcome you found us...

I am starting this blog for women that have meet through the Still Living thread on the Miscarriage, stillbirth and infant loss boards at babycenter.com

we have lost our babies to stillbirth, pre-term labor and some of us had premie babies that fought hard to stay alive but this does not mean that if you had a loss of some other kind you are not welcome. This a place where we can share more about our children, about our losses and help each other cope.

when you find out your child has died, or your OB tells you that they can no longer find the baby's heartbeat you world comes crashing down.

I hope we can all find some support here.

~Lucy's mom Christine
if you would like to be a contributor to this Blog please email me
girlyclown at yahoo dot com

Federal Legislation Action Alert: S1445/HR3212 Stillbirth and SUID Prevention, Education and Awareness Act of 2009

Hello friends it is that time again. we are asking friends and family to put pen to paper on behalf of the 26,000 babies that are stillborn and the nearly 5000 infants that die of sudden unexpected infant deaths each year ( SIDS & SUID) and 200 sudden unexpected deaths of children (SIDS in toddlers)

Thanks you for your support for this Act.

From FirstCandle.org

Legislative Action Alert | Your help is needed!
Newly Introduced Legislation will Support Education and Prevention Efforts for Stillbirth, SIDS and other Sudden, Unexpected Infant Deaths (SUID)

First Candle Press Release | Full Text of Bills: S1445, HR3212 | Fact Sheet | Sample Letter


First Candle is pleased to announce that the Stillbirth and SUID Prevention, Education and Awareness Act of 2009 was filed on 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://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 state's 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.

Federal Legislation Action Alert: S1445/HR3212 Stillbirth and SUID Prevention, Education and Awareness Act of 2009

Hello friends it is that time again. we are asking friends and family to put pen to paper on behalf of the 26,000 babies that are stillborn and the nearly 5000 infants that die of sudden unexpected infant deaths each year ( SIDS & SUID) and 200 sudden unexpected deaths of children (SIDS in toddlers)

Thanks you for your support for this Act.

From FirstCandle.org

Legislative Action Alert | Your help is needed!
Newly Introduced Legislation will Support Education and Prevention Efforts for Stillbirth, SIDS and other Sudden, Unexpected Infant Deaths (SUID)

First Candle Press Release | Full Text of Bills: S1445, HR3212 | Fact Sheet | Sample Letter


First Candle is pleased to announce that the Stillbirth and SUID Prevention, Education and Awareness Act of 2009 was filed on 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://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 state's 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.

our Babies: Always Loved, Always Remembered. A Memorial Albu

Please check out this project from the FirstCandle folks. also today is the last day to get a room as part of the room block for the symposium.

Put a face on our love and our loss.
Help us send parents to Congress on March 25, 2009.

We invite you to help support important Stillbirth/SIDS/SUID legislation by participating in the creation of “Our Babies—Always Loved, Always Remembered—Memorial Album.”

On March 25, 2009 bereaved parents and other infant health advocates from around the country will be coming together on Capitol Hill to lobby for important legislation related to stillbirth, SIDS (sudden infant death syndrome) and SUID (sudden unexpected infant death.)

And we want to bring the names of your babies with us!

This book will compliment the parent teams who will share personal stories during visits with key Congressional leaders. The objectives of this Baby Memorial Album are to:

1. Honor our babies with this loving tribute.
2. Create and leave a lasting reminder to Congress that our babies did not die in vain.
3. Raise funds and help pay for airfare/hotel for some enthusiastic families who can’t afford to attend the event.

This Day on the Hill is part of a broader Symposium that will bring in leading researchers to discuss current research efforts and strategies to help save infant lives.

It is our goal to make your legislators aware of the challenges you have faced and convince them that there is a dire need for research, prevention and awareness. As a result of the 2008 Day on the Hill, two bills were drafted and introduced into Congress!
How can you get involved?

With your help, we can make this compelling Memorial Album a reality. This is a place to remember your precious baby with thoughts, photos or even poetry. Here is a list of ideas and donation levels:

$10 Listing of the parents/siblings names, baby’s name, baby’s birth/death date (s), city and state
$25 Listing plus one photo
$50 Quarter-page: listing, photo and 50 additional words (view sample)
$100 Half-page: listing, up to two photos and 100 additional words (view sample)
$200 Full-page: listing, photos of your choice and up to 150 words
Donations of frequent flyer miles or donation of printing costs will also receive a full-page ad.
Deadline for submission is March 10, 2009.

Organizations, institutions, and businesses are also welcome to purchase space at the above levels to send their message of support. Any size donations are gratefully accepted.

To contribute to the memorial album, follow this link to detailed instructions. For more information on the Symposium and Day on the Hill, visit www.firstcandle.org.

May the New Year bring comfort and hope to you and your family. If you wish to attend the Symposium and/or the Day on the Hill, there will be an opportunity to deliver this Baby Memorial Album yourself. Whether in person or through the Album, your support can help us as we work toward a future where all babies survive and thrive.

Warm regards,

First Candle and the Parent ‘Baby Memorial Album’ Committee

SIDS/SUID and Stillbirth – A National Research and Advocacy Symposium March 23-25, 2009

from First Candle

SAVE THE DATE!

SIDS/SUID and Stillbirth –

A National Research and Advocacy Symposium

March 23 - 25, 2009 | Embassy Suites Hotel | Washington, D.C.

Welcome and Opening Speaker – Dr. Yvonne Maddox, NICHD

Space is limited, so register early to attend this innovative meeting. Leading researchers will present updates on current research and strategies for saving infant lives. There will be interactive workshops and a networking dinner for all researchers and attendees. The symposium will conclude with visits to Capitol Hill to encourage our nation’s lawmakers to support critical legislation and programming that will help us reach our goal of a future where all babies survive and thrive.

More details on the agenda will be posted on the First Candle website as they become available.

Family members affected by stillbirth, SIDS and SUID will be given priority consideration. After January 15, registration will be open to a more general audience. A non-refundable $25 deposit will hold your spot and be used to offset your food and beverage costs during the conference.

Hotel rooms will be available for $219 per night (plus tax), but more affordable housing options are being pursued; details to follow. If traveling by air, be sure to book early to take advantage of any discounted fares!

Register Now!

Pregnancy and Infant Loss Remembrance Day

On Oct 15th please participate in the Wave of Light to remember all the children that have died in the years past.
For more information on the Wave of light please visit October15th.com
Stillbirth Statics are tough to find and quote, but it is far more common that you may realize. I have heard everything from 1 in 125 births result in Stillbirth, to 1 in 1000. I have also read that as many as 71 infants are born still each day worldwide. I did read through the WHO (World Health Organization) 2006 Neonatal and perinatal mortality Global estimates which contained estimates of stillbirth rates worldwide. Now, I am even more sure that this is something that affect many families.

So light a candle on OCT 15th @ 7:00pm and remember all the babies; pregnancies, stillbirths and infants loss the world suffers through silently.