MISS Foundation Update

A message from MISS Foundation Legislative Liaisons, Richard May and Kelli Montgomery re: Stillbirth Collaborative Research Network‏

Dear Friends of the MISS Foundation,

The following is an update on both the stillbirth research, the politics regarding the appropriations for stillbirth research through the NICHD and the NIH and the grassroots advocacy for MISS members to execute to help address stillbirths in America.

Regarding the Stillbirth Collaborative Research Network pioneering five-year research study on stillbirths, I recently spoke with the lead research scientist Dr. Uma Reddy and have prepared an update on the status of their research.

The 500 stillbirths necessary for the study is about to be complete. As a consequence, the SCRN will need two more years and funding to complete the analysis from the 500 stillbirths researched.

They have already received a small funding extension as the appropriations from NICHD has been spent from the 2002 $3 million appropriations. The stillbirth research will help determine how stillbirths are reported, to find out better ways to determine the cause, and, better yet, to find better ways to prevent future stillbirths.

The research has also prompted the necessity and funding to:
1. Complete the analysis from the current study.
2. Conduct a follow up study from the mothers and parents of the stillbirths regarding their next pregnancy and/or their psychological state from their stillbirth and the best ways to address both.
3. Conduct a comprehensive study of 10,000 women in their first pregnancies to better predict the stillbirth possibility and/or risks of stillbirths.

Regarding the politics of stillbirth appropriations, the following is generated from a series of conversations with congressional appropriations staff members.

In 2007, the NIH Appropriations bills (both Senate and House) inserted legislative language directing the National Institute of Health (NIH) through the National Institute of Child Health & Human Development (NICHD) Agency to dedicate funds to continue the research and analysis regarding stillbirths in America. The language was inserted, in part, due to the great grassroots advocacy from MISS members throughout America supporting further stillbirth research appropriations from the U.S. Congress. The problem, though, is that President Bush vetoed the bill and threatened the veto again this year forcing Congress to pass a continuing resolution to appropriate the NIH and NICHD at the same levels as 2006.

Therefore, the congressional directive was never enacted and the stillbirth research is coming to a close needing funds for the next level of research,analysis and action. We are waiting until next year to put the pressure on Congress through the MISS membership and grassroots advocacy when we have a President who is much more sympathetic to the stillbirth concerns. Both Sen. McCain and Sen. Obama have expressed their public desire and/or action in supporting such research and not vetoing the appropriations thereof.

In the meantime, we need the commitment of all of those Congress members running for re-election to support the continued research and analysis of this pioneering study. We need all MISS members to contact their U.S. Senators and Congress members NOW during the upcoming election season asking for their support to insert NIH/NICHD appropriations directive language supporting the continued funding of the Stillbirth Research Collaborative Network's research, analysis and recommendations.


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Here are the key points in a sample letter that you may use or refer to:

Dear Senator/Congress Member,

I am your constituent requesting your support for NIH/NICHD appropriations of the Stillbirth Collaborative Research Network's continued stillbirth research project through appropriations and appropriations directive language instructing the NIH/NICHD to fully fund the continued SCRN's Stillbirth Research Project.

Stillbirths are the number one cause of infant deaths in America. According to the Bureau of Vital Statistics and the Center for Disease Control, stillbirths account for 25,000 - 30,000 infant deaths in America every year. Stillbirths account for 10 times the number of deaths than SIDS yet stillbirths are still unknown, undocumented and not properly addressed by the medical community or our public health system in America. In 2003, Congress appropriated a $3 million pioneering stillbirth study by the Stillbirth Collaborative Research Network through the NICHD under the NIH. Now, that study has been completed and Congress needs to address its follow-up and further appropriations to analyze and address the research conclusions. Therefore, as your constituent, I am asking you to support the further and continued NIH/NICHD appropriations of the Stillbirth Collaborative Research Network's stillbirth research project through appropriations and appropriations directive language instructing the NIH/NICHD to fully fund the continued stillbirth research and analysis.

As a grieving parent whose family has suffered a tremendous loss through stillbirth, I await your response to help research and prevent the number one killer of our children in America.

Thank you on behalf of the MISS Foundation,

Name

Address (to prove you are a constituent)

Phone Number

MISS Foundation-From Hopelessness to Hope

MISS Foundation News Release - Stillbirth

babykick teams with MISS Foundation
promoting kick counting for the prevention of stillbirth

Manhattan Beach, Calif.—July 25, 2007--More than 40 years of research shows that an expectant mother's tracking of her baby's fetal movements is an excellent way of checking on her baby's well-being. Kick counting, the systematic recording and tracking of fetal movements, is easy to do and is recommended by the American Pregnancy Association (APA) and the American College of Obstetricians and Gynecologists (ACOG).

The MISS Foundation, an international organization that supports grieving families after a child's death and educates on infant death, prevention and awareness, supports the Pregnant Women Count campaign, which encourages kick counting as a means to reduce the risk of stillbirth. babykick, with their newly launched kickTrakTM, is proud to announce their partnership with the MISS Foundation to promote kick counting and the prevention of stillbirth. Both organizations share the goal of education and research leading to healthy pregnancies and fewer child deaths by supporting kick counting and the use of the kickTrak. The kickTrak enables moms-to-be to track and record their baby's movement pattern, keeps track of pregnancy progress and also times contractions when labor begins. A portion of the proceeds from kickTrak sales will be donated back to the MISS Foundation in support of advocacy programs and educations.

"The kickTrak smart kick counter is a small, hand-held device which helps ensure moms-to-be of the health of their pregnancy," says Diep Nguyen, MD, developer of the kickTrak. "Kick counting every day and using the kickTrak gives moms great peace of mind, knowing their baby is developing as expected."

kickTrak was developed based on scientific research emphasizing the kicks, jabs, rolls, twists, and turns felt by mothers are excellent indicators of their baby's well-being. Monitoring of fetal movements is not a full time task and both APA and ACOG recommend expectant mothers to note the time it takes for their baby to complete ten movements, at approximately the same time each day when the baby is usually most active. Although each baby is different, healthy babies should have ten movements within two hours. Most babies usually do so in much less than 30 minutes.

"In this time of increasing pre-term birth and increased managed care it is important to encourage mothers to become ever more engaged with the progress and health of their pregnancy, “ stated James C. Caillouette, M.D., F.A.C.O.G., F.A.C.S., The clinical professor emeritus from University of Southern California Keck School of Medicine went on to say, “babykick’s kickTrak is a proven methodology, and when used on a regular basis as suggested, will provide increased mother, baby and physician communication, which is beneficial for everyone. I am confident that kickTrak will become standard of care."

"The goal of kick counting is not to make moms anxious but to have it be a part of their daily prenatal care," says Dr. Nguyen. "Medical research supports the daily kick counting method as a simple, effective, harmless and reliable way to screen for fetal well-being to reduce the risk of stillbirth."

As soon as a woman knows of her pregnancy she can begin using kickTrak to track and count down her progress. After 24 weeks gestation she can begin her daily use of kickTrak to keep a reliable diary of her baby's movement, and then time contractions when labor begins. Noting significant changes in the baby's movement pattern empowers moms to promptly alert their doctors to potential problems. Early detection of problems allows for timely intervention and can potentially reduce the risk of stillbirth.

The baby kickTrak is available for purchase in the MISS Foundation store where a portion of all purchases benefits the MISS Foundation.

MISS Foundation News Release - SIDS

Soft bedding found to be hazardous to infants
Arizona company teams with the MISS Foundation for safer alternative to crib blankets

Anthem, AZ - Despite the Consumer Product Safety Commission stating that soft bedding in the crib may be hazardous to babies under 12 months old, parents across the country continue to unwittingly endanger their child’s safety by using crib blankets, bumper pads and other soft bedding. The risk is unnecessary and the solution is practically old-fashioned in Europe – and lauded by many U.S. pediatricians, health experts and now the MISS Foundation (www.missfoundation.org), an international organization that supports grieving families after a child’s death and educates on infant death prevention and awareness. Earthwalk Design LLC is proud to announce their partnership with the MISS Foundation to promote safer sleep practices for babies under 12 months of age. Their mutual goal is to spread the word about the potential risks of soft bedding by offering infant and toddler “sleep sacks” as a safer alternative to standard crib blankets. A portion of proceeds will be donated back to the MISS Foundation.

“Sleep sacks are wearable blankets that cannot be kicked off or cover a baby’s face,” states Christina Alborn, owner of Earthwalk Design and www.pampersack.com. “Our PamperSack™ sleep sacks are not a garment, but are worn over pajamas. They keep a baby warm like a blanket would, but won’t cover a baby’s face like soft, loose bedding can.” Sleep sacks have been used extensively in Europe for the last thirty years.

Soft bedding, rebreathing and the SIDS factor

Soft bedding has been linked to a condition called “rebreathing.” Rebreathing occurs when bedding molds around or covers a baby’s face as they sleep, creating a stale pocket of expired air eventually reduced to carbon dioxide. Oceanside, CA, based pediatrician Dr. Douglas Stein states, “It has been established that rebreathing, when infants breathe their own exhaled air, is a theory associated with Sudden Infant Death Syndrome (SIDS). Laying infants to sleep on their backs has reduced the incidence of SIDS, but babies can still roll and therefore soft bedding is to be discouraged.”

“My goal is not to be an alarmist or to give parents a false sense of security,” says Alborn. “I just firmly believe in reducing identified risk factors until we have more information.” Joanne Cacciatore, CEO and Founder of the MISS Foundation, echoes the sentiment by stating, “Sleep sacks are a common sense choice. They have been recommended by medical associations, including the American Academy of Pediatrics, to reduce bedding related mortality. If these products help to save one baby’s life, we are grateful.”

MISS Foundation News

Important News from the MISS Foundation:

July/August newsletter available online.

:::



The Alliance of Grandparents a Support After Tragedy (AGAST) has officially merged with the MISS Foundation as a program outreach to grieving grandparents.

AGAST, founded by SIDS grandmother, Sandra Graben, began as an outreach to grandparents after the death of a grandbaby from SIDS. It quickly morphed into an outreach to all grandparents after any grandchild's death.

Because their mission of overall family support was so well aligned with the philosophy of the MISS Foundation, Graben and Joanne Cacciatore, MISS Foundation CEO and founder, met and determined that the unification of the groups would be beneficial for families experiencing life worst tragedy: the death of a child/grandchild.

The merger became official last week.


The name of the outreach will be: MISS Foundation's AGAST Outreach Program and will include the newsletter, memorial cards, grandparent-to-grandparent mentoring, and family support packets.

If you have any questions about this important merger, please contact info@missfoundation.org.

:::

You can listen to the song, Soaring Away, at the band's profile.

Dear Friends of the MISS Foundation,

Ten years ago this week my wife and I lost our son.

Needless to say, our world was shattered and we were catapaulted into a downward spiral of grief, despair, and depression.

We have managed to move forward, but - as you are well aware - it changes you forever.

More recently, I have had the privilege of discovering the MISS Foundation when I was approached by MISS volunteer Barbara Kurtz and asked about doing a fundraiser with my band, 4 Car Garage.

What has come of it is the song "Soaring Away."

"Soaring Away" is an original song that I wrote in honor of my son, Bradley.
It is my attempt to describe the feelings that are harbored when you go through something like we have and that you hope nobody else ever has to experience.

It is an emotional, bittersweet song, but I hope that someway it can help in the healing process for all of us.

Coincidentally (or not!), the song was accepted by iTunes on the ten year anniversary of Bradley's birth.........that's got to be a sign that our children are 'soaring away.'

All proceeds from the song will go to the M.I.S.S. Foundation and their efforts. There is a link to the iTunes store below.....take a listen and download it if you want (it's also available on Napster & Rhapsody). I hope you enjoy the music - thanks for listening......peace be with you.

Greg White, M.D.
Chief of Orthopaedic Surgery
Phoenix Children's Hospital
4 Car Garage - 4 Car Garage - Soaring Away

California MISSing Angels Bill Passed

Yes Votes
Alquist Calderon Corbett Correa Ducheny Florez Hollingsworth Kehoe Kuehl Lowenthal Maldonado Migden Negrete McLeod Padilla Perata Ridley-Thomas Scott Simitian Steinberg Torlakson Vincent Yee

No Votes
Aanestad Ashburn Cogdill Cox Denham Dutton Harman Machado Margett McClintock Romero Runner Wiggins Wyland

Absent, Abstaining, or Not Voting
Ackerman Battin Cedillo Oropeza

What happens next?

The bill moves to the California Assembly, where the legislative process begins again. The bill will likely be assigned 2, 3 or more committees in the Assembly in the weeks ahead.

Public testimony and support will be allowed -- just like in the Senate.

Assuming the bill passes the various Assembly committees, the Assembly votes. If it passes the Assembly, the bill moves to the Governor to be signed into law.

The bill is *indeed* on the right path. But we continue to need your help. You can see from above, lawmakers are hotly contesting this bill.

Some have called this "hijacking" for political reasons -- namely pro-choice/pro-life. Despite, we celebrate the bill passing the Senate yesterday and people like you helping to support it!

More in the days ahead---

Daryl Logullo
National Legislative Liaison (volunteer)
MISS Foundation

Stillbirth bill sparks squabble in Legislature
By Edwin Garcia
MediaNews Sacramento Bureau
Article Launched: 06/05/2007 01:29:29 AM PDT


SACRAMENTO - It began as a noble idea: Comfort mothers whose babies die at delivery by allowing them to purchase an official California "certificate of stillbirth."

But by the time the state Senate voted - and approved - the measure Monday, it had become a referendum on abortion rights and one of the oddest and messiest fights this year in the Legislature. (continue)

MISS Foundation Email

Dear MISS Members,

Elisabeth Kubler Ross, M.D. spent more than five decades devoted to helping the dying and the bereaved. She has helped countless people, and our entire culture, in coping with death, dying, and mourning. Much of her life was devoted to working with dying children and their families. She is a thanatological icon and hero.

Elisabeth was also a friend to the MISS Foundation, a cherished advisor. She was my beloved friend and mentor.

In honor of her upcoming birthday, July 8th, the MISS Foundation would like to offer a "One who soars (tm)" band to our members.

You can wear this in honor of your beloved child, and to recognize the legacy of Dr. Kubler-Ross' work.

Please send a SASE with two stamps to:

MISS Foundation
EKR Legacy
PO Box 5333
Peoria, Az 85385

May your Memorial Day weekend be filled with loving thoughts of your children. We also recognize those young men and women who have lost their lives in service.

"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people
do not just happen."

Elisabeth Kubler-Ross
July 8, 1926 to August 24, 2004

Let us never forget the gifts she left this world

Very Sincerely,
Joanne Cacciatore, PhD Cand, MSW, FT

New York Time Article Update

AOL has picked up the recent New York Times article regarding the Missing Angels Bill in New York. The AOL site allows readers to comment on the article or vote on the question "Should states issue birth certificates for babies who are stillborn?"

If you wish to add your voice to the discussion, go here.

edited to add: there are currently comments on those discussion threads that are extremely hurtful, so please be aware of this if you go there!

MISS Foundation Update

The MISS Foundation is featured in a prominent New York Times article on Tuesday, May 22, 2007.

A Move for Birth Certificates for Stillborn Babies

Last summer, three weeks before her due date, Sari Edber delivered a stillborn son, Jacob. “He was 5 pounds and 19 inches, absolutely beautiful, with my olive complexion, my husband’s curly hair, long fingers and toes, chubby cheeks and a perfect button nose,” she said.

The sudden shift from what she called “a perfectly wonderful healthy pregnancy” to delivering a dead infant was unfathomably painful, said Ms. Edber, 27, who lives in Los Angeles with her husband, Daniel. (continue)

We are grateful to the reporter, Tamar Lewin, for writing this very special story.

Unfortunately, we are also deeply disturbed by comments made by Ms. Perry Lynn Moffit which are clearly incongruent with the desires of many families experiencing stillbirth across the nation. Our position is that bereaved families of stillborn babies demand what is rightfully due them, and cannot be assuaged merely by an "informal memory certificate" offered by a hospital. This false assertion serves to undermine all of our efforts. Therefore, we reject this notion on behalf of thousands of stillbirth families around the country.

Further, we reject Ms Moffitt's characterization of the MISSing Angels Bill as suggesting that stillborn babies "become cherubs in heaven." The bill was named, instead, in honor of the many MISS Foundation children who died before their time, and embodies the more secular definitions of 'angel' including goodness, purity, and virtuousness (American Heritage Dictionary, 2007).

Ms Moffitt's unfortunate and misinformed comments aside, the article was well written, and accurately portrayed some of the complex struggles facing women, men, and families affected by the tragedy of stillbirth. We thank the courageous families interviewed in the article, and applaud the efforts of the volunteer lobbyists of the MISS Foundation working diligently in many states to pass this important legislation.

~MISS Foundation Email

MISS Foundation Press Release

Feminists Groups Finally Hear the Cries of Women Experiencing Stillbirth

Guttmacher Institute the Center for Reproductive Rights, Planned Parenthood Federation of America, the ACLU...and NARAL Pro-Choice America told Stateline.org they take a neutral position on the stillborn birth-certificate issue.

"We are hopeful that the remaining 31 states will pass with relative ease now that the opposition has changed their positions," said Joanne Cacciatore, CEO of the MISS Foundation and a social scientist who studies the effects of stillbirth on women. "It is important for many, many women from an emotional, psychological, and epidemiological perspective...and this is about advocating for these mothers."

Cacciatore notes that this paradigm shift in attitudes toward stillborn babies comes, in large part, as a result of a cooperative social movement between the MISS Foundation and other grassroots groups that provide support and resources to families experiencing infant and child death. "We are not going away," Cacciatore continues. "We are prepared to take our stand. It is the least we can do for these children and their families."

Stillborn laws entangled in abortion debate
By Christine Vestal, Stateline.org Staff Writer

Every year, some 35,000 women deliver babies who die just before or during birth. A number of parents say their grief over the tragic loss is made worse because most states simply issue death certificates, never recognizing the birth of their stillborn offspring. (continue)

MISS Foundation Press Release

Presidential Hopeful Gov Bill Richardson Ignoring Pleas From Heartbroken Stillbirth Families: Dramatic Video Tells Stories

Phoenix, Arizona (PRWEB) May 2, 2007 -- When Governor and presidential hopeful Bill Richardson vetoed the MISSing Angels Bill (SB17) after it passed the New Mexico legislature with unanimous bipartisan support, the MISS Foundation vowed to launch an awareness campaign targeted at educating the governor so he wholly understands the issue of stillbirth.

The MISSing Angels Bill helps provide much-needed comfort, dignity, and documentation to women and their families experiencing the death of a baby just prior to or during birth. All states, including NewMexico, require the family to pay for funeral expenses, and a death certificate/report is issued after a stillbirth. Yet, some states refuse to offer women the choice of a birth certificate. It offers an option to women who give birth to loved and wanted babies who die unexpectedly to choose a birth certificate.

"I would assume that the last thing a presidential candidate would want to do is knowingly wound thousands of grieving mothers after their baby's death," said Daryl Logullo, Legislative Liaison for the MISS Foundation.

In response to the veto, the MISS Foundation has released a public service announcement that portrays the experiences of bereaved parents after stillbirth and is directed at Richardson's campaign. A very sensitive and controversial video, it speaks of the enormity of this public health issue. "Bill Richardson made a grave error injudgment, clearly being misinformed about this issue by his advisers," said Joanne Cacciatore, CEO of the MISS Foundation. Both the MISS Foundation and the National Stillbirth Society are calling for Governor Bill Richardson to offer a public apology to these bereaved mothers and families.

MISS Foundation-Missing Angels Bill PSA

Update: MISS Foundation

ABC's Carey Pena did a wonderful creative story on the MISS Foundation and the MISSing Angels Bill. It was poignant, moving, and authentic.

http://www.azfamily.com/video/localnews-index.html?nvid=135379&shu=1

Updates for the New Mexico MISSing Angels Bill

To find updates or to contact the initiators of the New Mexico MISSing Angels Bill, visit their blog at http://nmmissingangels.blogspot.com.

Press Release from the National Stillbirth Society and MISS Foundation

New Mexico Governor Bill Richardson Stuns Tens-of Thousands of Bereaved Parents and Vetoes the MISSing Angels Bill

Parents nationwide outraged at indifference and ignorance!

Albuquerque, NM. (April 7, 2007)--- Just last month, the New Mexico MISSing Angels Bill (SB17), passed the New Mexico legislature with unanimous, bipartisan support. Yet, today, April 7, 2007, presidential hopeful and Governor Bill Richardson vetoed this important piece of legislation, making New Mexico the first of nearly 30 states to reject the will of its citizens and legislators regarding the way in which the birth of a stillborn baby is recognized and recorded.

The MISSing Angels Bill (SB17) was created to help provide much-needed comfort, dignity, and legal documentation to women and their families experiencing the death of a baby just prior to or during birth. Currently, New Mexico law requires reporting of stillbirth/fetal deaths and demands that families pay funeral costs for their deceased baby, yet provides no acknowledgement that the baby was born. “It’s an unthinkable tragedy,” says Carin Dhouadi, New Mexico resident and constituent. “I gave birth to a full term baby who died, and the state says I must bury her. But they won’t say she was born? How can you die if you never were?”

Joanne Cacciatore, CEO of the MISS Foundation and a PhD Candidate who studies stillbirth, passed the first bill in Arizona in 2001, and has worked to pass it in other states since. She says that families around the nation are outraged at Richardson’s move. “Richardson has just flippantly driven a stake through the heart of this legislation that addresses the ultimate woman’s issue…Women give birth. And their babies- about one in 100- are dying as a result of stillbirth. He’s perpetuating the ignorance,” she says.

The change might not seem significant to many. However, to those who have experienced the anguish of losing a baby – SB17 is an important step in allowing grieving parents the same respect given to the woman leaving the hospital with a healthy infant in her arms. “This bill had support from everyone, including pro-choice legislators like Representatives Gail Chasey and Mimi Stewart, who understand this as an important woman’s issue,” said Halo Golden, volunteer lobbyist for the NM bill and the mother of a stillborn baby. Richard Olsen of the National Stillbirth Society believes that this move was ‘political pandering’, stating that the “governor’s veto is an insensitive act that marginalizes women and ignores the interests of his own constituents in favor of his presidential aspirations.”

Cacciatore agrees, saying, “Richardson just vetoed a critical woman’s issue, for no sound reason, and with unilateral authority…Is this the type of person we can trust to represent women’s interests across America? Richardson won’t get the votes of hundreds of thousands of our grieving parents across the country…The vetoing of this bill is a ham handed misjudgment on the governor’s part.”

“He clearly doesn’t understand this bill, and didn’t take the time to inform himself. It’s shameful. He’s slapped grieving mothers and father in the face, not just in New Mexico, but across the country,” says Daryl Logullo, National Legislative Liaison for the MISS Foundation. “He owes them, and the people of the state, an immediate apology and a commitment to this important law that parents dearly want.”

Approximately 30,000 babies are stillborn each year in the United States. The cause of death for more than half the number of full-term (40-week) stillbirths is unknown, even after autopsy.

The MISS Foundation and the National Stillbirth Society are getting ready to launch an awareness campaign targeted at educating the governor so he wholly understands the issue. The organizations are also calling for the governor to request a special session to address it and issue an apology to bereaved parents whose babies were stillborn. For more information on the MISSing Angels Bill visit http://www.missingangelsbill.org/ or http://www.missfoundation.org/.

Please email and call Governor Bill Richardson and express your feelings!http://www.governor.state.nm.us/emailchoice.php?mm=6
http://www.richardsonforpresident.com/page/s/contact

Tell him he will NOT get your vote!

Then call his office (505) 476-2200 and tell him he's offended bereaved women and men and children across the nation. Tell him we stand against him until he calls a special session to sign this bill!

**UPDATE: Some members have reported not being able to get through on the number in the earlier notice. Try 505-982-2291. - Richard Olsen, National Stillbirth Society***

California MISSing Angels Bill

The MISS Foundation has a bill currently pending in the California legislatureto help families experiencing stillbirth (see http://www.missingangelsbill.org) called the MISSing Angels Bill.

If you live in California, or know someone who does, please pass this along to them. Please visit this link and fill out (ONLY ONCE IS NECESSARY) your name in support of SB850 (Maldonado (R ) and Correa (D)). This will be sent to everylegislator who is undecided on this legislation. (See the link above for moreinformation on the bill).

http://70.84.121.98/~jnevels/support.php?se_id=13