Online Advocacy for Stillbirth and SUID

I have posted this before and I will keep posting it until something happens. First Candle and the CJ Foundation for SIDS are partnering to have House bills HR3212 and S1445 implemented into national law in the U.S.

This is the Stillbirth and SUID Prevention Education and Awareness Act. This bill would "standardize investigations of stillbirth and sudden unexpected infant/childhood deaths up to age 4, create a national registry for these tragedies, track risk factors, fund public health messages and provide grief support services for families affected." (from First Candle's website)

Please go to First Candle's site and use their Online Advocacy form to write letters to members of Congress who have the ability to pass this into law and make a difference for the thousands upon thousands of parents who will experience a stillbirth in years to come.

Support Stillbirth Legislation

I've written about this legislation before, but it's time to write about it again. Stillbirth legislation has been introduced to Congress (again--I don't really understand why the "again," but such are the mysteries of our government). Information on the bills can be found at the First Candle website; an excerpt is here:


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.


We need to have letters written within the next week to members of Congress in support of finding the causes and preventing stillbirths. Please, write a letter and pass this information on to friends and family so we can make a difference for parents--and babies--everywhere.

26,000 babies stillborn in the U.S. every year are 26,000 too many.

Another Mother's Day

This post isn't going to be so much about me - this is my 6th Mother's Day without Ben, but I always had Charlotte, so I never had to experience a Mother's Day having given birth, but without a child. Oh, I still miss him, of course, and think of him every day, and especially on Mother's Day, but I have learned to be grateful for the two beautiful babies I have, and I treasure every Mother's Day with them.

I have reason to believe some of my lurkers are new here because of a recent loss - and I'm so sorry. And I know you are facing this day, wondering what you are going to do, how will you survive it?

I hope, for your sake, your friends and family rally around you with hugs and flowers, meals and support. Yes, you ARE a mother, even without your baby here. So, how will you get through this coming Sunday?

If you need to hole up in bed, or in your home, and not come out, that's ok. If that's what you really want to do, then do it. If you want some kind of ritual that will honor your child, there are all sorts you can do. Some people plant a tree, or a rose bush, or some other special flower, they can tend to, year after year, and watch grow. Regular readers of my blog will know that my husband and I make a donation in our son's honor every year on his birthday, to the hospital where he was born (we had exceptional care from a compassionate staff) and to the charity Save the Children, which supplies food and medicine for children in need. I know of one family who had a special place at the local zoo that meant something to them in relation to their son, and they dedicated a bench in his honor there.

You may wish to purchase a special piece of jewelry to wear, from someplace like Shannon Schoon's site. Alternatively, go online to an organization like Share, or First Candle, to make a donation or for more suggestions on how to honor your baby.

Regular readers, please offer your suggestions in the comments for newly bereaved parents.

If you're reading this because you're a friend or family member of someone who's lost a baby, and you're wondering how to help, it's pretty easy. Call them or send them a note before Mother's Day (and Father's Day), just to say, "I know this is a hard day for you, and I wanted you to know I'm thinking of you. And that I'm sorry." Believe me, it will mean the world to them. Ask if they want to talk about their baby, or show pictures or share memories. What most parents who've lost children want more than anything is for people to acknowledge the child they lost. If you want to do more, perhaps you could help them with one of the rituals I mentioned above. At the very least, please, please, acknowledge what they've lost.

For all the parents out there who've lost a child, I wish you peace.

First Candle's 2009 Research & Advocacy Symposium

First Candle is "a national nonprofit health organization uniting parents, caregivers and researchers nationwide with government, business and community service groups to advance infant health and survival. With help from a national network of member and partner organizations, we are working to increase public participation and support in the fight against infant mortality." (From their website.)

I expect many of you who read this blog already know about First Candle, and I know I've mentioned them here before. They are holding a symposium in Washington, DC on March 23, 24, and 25. They're planning some presentations on stillbirth and SIDS research, a networking session, and, most importantly (at least to me) a "Day on the Hill" of grassroots advocacy to members in the House and Senate, providing anyone interested with transportation and information on how to talk to your Congresspeople. There are bills, like this one, we've been advocating for, and the Missing Angels Bill, which is all about getting birth certificates, not just death certificates, for our babies.

I hope to be there, and if you're in the area, please consider attending too. I should know in the next few days if I can definitely go; I hope to meet some of you there.

Support Early Infant Death Research

First Candle is an organization devoted to making sure babies don't die. They do research and support work relating to stillbirth and SIDS. Over the summer I received a newsletter from them with the news that the website www.goodsearch.com allows users to search the web for free, and donates money to the charity of your choice for each search.

Here's the blurb from the First Candle newsletter: "GoodSearch.com is a new Yahoo!-powered search engine that donates half its advertising revenue, about a penny per search, to the charities its users designate. Use it just as you would any search engine, get quality search results from Yahoo! and watch the donations add up for First Candle!"

I say we give it all a try - anything to help.