Tuesday, October 14, 2008

Infant Death Awareness Day October 15th

About the Miss Foundation

Tomorrow, (October 15th) is National Infant Death Awareness Day. At 7PM family and friends of those lost will light a candle in rememberance. I wanted to pay tribute to all the mothers that I know that have lost their precious babies just like I did. It is one of those things that people really have no idea how deep the grief is of losing a child until it happens to you. My blog is about my life and the good and bad and so I need to honor my son and others who have lost a child this way.

So to all my silent grief sisters, Kristen, Odette, Tabitha, Sarah, Dusty, Tamara who have experienced this nightmare my thoughts are with you. I know with so many mothers & fathers the most important thing is that people never forget. Our children were real, wanted, we lost a child, grandchild - hopes and dreams for the future. Of course we have "hope" for the future but no one ever takes the place of the one lost. If I could say anything to anyone who wonders what to say to someone who lost a little one, don't trivialize it and don't feel bad to ask about the baby lost. I love when people ask me questions as it keeps his life alive and also brings awareness to this sad epidemic.

Research for stillborns is very low even though it is the biggest cause of deaths in infants including SIDS. I think not knowing why is the hardest part of losing a child. Could you imagine if one of your children died and they would tell you, "Statistically 50% of the time you will find out a reason".. this is the statistics for finding a cause. Chase was healthy, had no genetic problems and I have had to accept the fact that he died with no known cause. I was told it was a fluke, just like so many other women. I hope one day there is some money put into this cause so other women would not have to suffer the unknown like we have.

In memory of my son:

Stillbirth Awareness and Research Act

A few blogging buddies have asked me to pass this post on...and I do so unhesitatingly. This is an opportunity for all of us to take a few moments out of our day and spread the word. It's as simple as making a new post in your blog, or sending an e-mail, or posting a bulletin...merely copy and paste. Also, I have created an icon to help spread the word about National Pregnancy and Infant Loss Remembrance Day. Here's the link to get the HTML code. I hope you'll post it in your blog or personal web page.

October 15th is National Pregnancy and Infant Loss Remembrance Day in the United States. More than 25,000 children are stillborn in the United States every year leaving mothers, entire families and communities devastated. Estimates of the rate of occurrence of stillbirth make it at least as common as autism.

Stillbirth is not an intractable problem. Greater research would likely significantly reduce its incidence, but good research requires good data. H.R. 5979: Stillbirth Awareness and Research Act is under consideration by Congress. This proposed bill would standardize stillbirth investigation and diagnosis, thus providing more data for the needed research. Better research means fewer children born still.

This bill is in the first step in the legislative process. Introduced bills go first to committees that deliberate, investigate, and revise them before they go to general debate. The majority of bills never make it out of committee. Keep in mind that sometimes the text of one bill is incorporated into another bill, and in those cases the original bill, as it would appear here, would seem to be abandoned.

On October 15th, remember the thousands of unfinished children lost and the families who remain to grieve them. Honor them by taking action. Let's help pass H.R. 5979.

History and facts about H.R. 5979.

Stillbirth Awareness and Research Act of 2008 - Expresses the sense of Congress that: (1) more states should enact legislation that allows the issuance of a Certificate of Birth Resulting in Stillbirth; and (2) the Director of the National Institutes of Health (NIH) should increase the allocation of funds and other resources for stillbirth research.
Amends the Public Health Service Act to direct the Secretary of Health and Human Services, acting through the Director of the Centers for Disease Control and Prevention (CDC), to establish and maintain a scientific registry of stillbirths in the United States, which shall include for each stillbirth information on the stillborn fetus and the mother's health and pregnancy as collected and submitted by states on the U.S. Standard Report of Fetal Death.
Requires the Secretary to: (1) provide for the development of a standard definition of stillbirth and a standard protocol for stillbirth data collection and surveillance; and (2) carry out a national campaign to increase public and state awareness of such definition and protocol and public awareness and knowledge of stillbirths.

Information cited from GovTrack.us H.R. 5979--110th Congress (2008): Stillbirth Awareness and Research Act of 2008, GovTracks.us (database of federal legislation). Accessed October 2, 2008
Action Steps:

Step 1. Use Your Blog to Enlist Others
-Copy the contents of this entire post and publish it on your blog immediately.

GOAL: Enlist 10 of your readers to spread the word

Step 2. Use Your E-mail to Enlist Others
-E-mail 5 bloggers and ask them (nicely and in an unspammy way) to publish these action steps on their blog. Consider contacting celebrity bloggers, political bloggers, medical bloggers, or bloggers who are not part of your reading community.

GOAL: Enlist 3 bloggers outside of your normal blog sphere to spread the word in other online communities.

Step 3. Help Pass the Stillbirth Awareness and Research Act
-By October 15th, publish a post on your blog supporting H.R. 5979 Stillbirth Awareness and Research Act. For maximum impact, title your post: "Stillbirth Awareness and Research Act."

GOAL: 1,000,000 Google results on October 15th when that term is searched for. Currently, Google only returns 20,400 pages - most of which have nothing to do with the bill.

How you can make a change:









Anonymous said...

Heidi, thank you for sharing so openly. Maybe one day I will be half as brave as you are. I guess my hurt and pain is still so deep that I can't even imagine sharing on this level. Still, I am glad that you did because I enjoyed reading this post and even though no one reads my blog (smile) I will post it on my own. I wish you and Chad a peaceful day.

Stephanie said...

So many people are touched by this. It's important to share it with as many people as we are able. My own m-i-l went through this too with no answers. It wasn't talked about back then and so many parents have never really grieved or been able to bring closure. Yes, Eric has a little brother.

Anonymous said...

Thank you for shedding light on how it feels to lose a child. The hurt never goes away and you just wonder why. People think you get better with time - no you get better at hiding your grief. Time helps the rawness but you NEVER forget. How do you forget the child you carried for 10 months What a great tribute for all the moms out there. Your sharing means so much.

Julie said...

Love your blog. Thanks so much for keeping your sons memory alive as well as bringing to light what it means to have a stillborn. I lost my son 14 years ago, and it is a void you never forget. It is shame that there is no money allocated for research for this epidemic. The biggest hurt for me is people who forgot or think you should forget. Relatives especially, very hurtful when you need them most. Your blog is great.
Julie Wycott

Nicole said...

Heidi I love this post. Your blog is so truthful thank you for sharing. You have meant so much to me for being there for me when I went through my loss. Many people seem to think it is taboo to talk about the children we lost, I wonder if they lost a living child if they would feel the same way.
Nicole Williams