ASAP Steering Team Update – July 2013

Winston Churchill once said “Never, never, never ever give up.” 

No truer words can be said for the determination of those that have been impacted by stillbirth whether they be parents, families or friends and acquaintances.  We know all to well that tragically  the lives of too many precious babies are lost each and every day.  And yet these children have no voice unless we step up collectively to speak for them. 
 
The ASAP Coalition was founded because we know that individual voices, no matter how loud they are, when talking all at once are impossible to understand.  But – when we gather together and shout in unison from the same mountain top we can and we will be heard and we will make a difference.  The Coalition is not about duplicating anyone’s individual efforts but making sure that the world knows about them and joining forces to raise the volume on the issues that are so very important to us all.
 
The ASAP Coalition Steering Team has been busy behind the scenes working on a number of projects and it is way past time to give you an update.  We apologize for the length of this newsletter and pledge to have regular and timely updates going forward!  Please let us hear from you if you would like to be more deeply involved in anything going on.
 
Stillbirth Legislative efforts
  • We are watching the various pieces of legislation that have been introduced into Congress as well as some that are appearing before state legislators.  Our belief is that ANY piece of legislation that will impact stillbirth issues in a positive way is a good piece of legislation.  Passing legislation on a state or national level takes great insight to how the process works and strong determination to encourage legislators to support the issues.  Keep an eye on the ASAP Coalition website for legislative issues as they happen and lend your support to these bills.

  • Speaking of legislation – we are so proud of ASAP Member and co-founder, Debbie Haine Vijayvergiya for pushing legislation in New Jersey in memory of her daughter Autumn Joy.  This legislation was UNAMINOUSLY approved in record time and will go to the Assembly before crossing the Governor’s desk for signature.  We believe this legislation could be replicated in other states!  If you are interested in pursuing such an endeavor – contact Debbie at Debbie@dlh-associates.com. Read the full text of The Autumn Joy Stillbirth Research and Dignity Act here.

Stillbirth Prevention efforts –

  • In February Marian Sokol and Lindsey Wimmer presented a proposal on behalf of the ASAP Coalition to the Members of the Coordinating Commimttee for the National Child and Maternal Health Education (NCMHEP) to carefully study the statistics, impact and potential of addressing stillbirth as the focal point of the next multi-year campaign.  This is the organization that has led a successful campaign the last few years regarding elective preterm deliveries.  While the ASAP Coalition was not chosen as their focus for their next multi-year campaign we consider it to be a success as we were able to bring the issues to light before an impressive groups of individuals comprising the committee including approxixmately 30 health provider associations, nonprofit organizations, and federal agencies. Read the full proposal submitted to NMHEP
  • Steering Team members have held a number of conversations with various organizations and agencies over the past months.  As a result of these discussions a letter has been sent by First Candle on behalf of the ASAP Coalition with a specific request that NICHD convene an Interagency Consensus Working Group to bring together representatives from federal agencies, along with key parent group advocates, ACOG, SMFM, AAP, AAFM and selected scientists to define the State of the Science and the Issues.  This letter has been graciously acknowledged but we have not received a formal reply to this request.
  • The ASAP Coalition is supporting a number of current stillbirth research projects including the STARS Study.  Learn more.  Can you help us promote enrollment in the STARS Study by placing the logo/link on your website or including information in your newsletter?  If so, please let us hear from you: info@starlegacyfoundation.org

AWARENESS –

  • In 2009 SANDS of the United Kingdom launced their Why 17 Project to spell out clearly the issues surrounding stillbirth in the UK.  This document was disseminated to Parliment and has been a catalyst for change.  The ASAP Coalition discussed this document and the noted need for a similar publication that would focus on the various and complex issues surrounding stillbirth in the United States.  While the issues in the US share many commonalities with the UK and the rest of the world there are also a number of issues unique to the US.  As a result the ASAP Coalition is in the process of authoring this yet unnamed document in consultation with various experts from around the US and the world.  It will take some time to complete but we are hopeful that a look at the big picture will be a catalyst for change in the US as well.  By no means does the ASAP Coaliltion intend to tackle each and every issue identified but we believe a single compilation of the issues will help to further individual efforts surrounding stillbirth awareness & prevention.  If you would like to be involved in this effort contact lindsey@starlegacyfoundation.org.
  • The ASAP Coalition was represented at the recent PLIDA Conference in Minneapolis.  Information about the Coalition was provided to the 300 attendees and we experienced a jump in our membership as a result.  Information was also provided to attendees on current legislation and research studies.
  • The ASAP Coalition has enthusiastically supported the efforts of two awareness projects currently underway – the RETURN TO ZERO movie as well as the STILL Project.  Although both are video projects the RTZ movie is a dramatization of the experience of one couple experiencing a stillbirth and all of the complexities that follow.  The STILL Project is being created as a documentary project to bring awareness to various individual stillbirth issues.

MEMBERSHIP DEVELOPMENT & RETENTION –

  • The ASAP Coalition currently has over 800 individual, health projessional, organization, group and publication members and the list grows each day.  Help us expand our reach to raise stillbirth awareness and prevention efforts!  Invite your colleagues, friends, families and anyone who will link arms with us to turn up the volume and bring stillbirth out of the shadows!
  • As you know, the ASAP Coalition is not about recreating or duplicating any efforts of our members – but rather to support all those efforts and make sure everyone knows what is all going on!  In doing so, we can all speak with one voice when it is important and yet carry out our own individual important missions.
  • The Coalition has developed a STILLBIRTH HERO Award program and will recognize members each quarter representing individuals, groups, publications and health professionals who have been nominated and chosen by the membership for extraordinary efforts!  Our first quarter honorees were Cathi Lammert of National SHARE and Jonathan and Carrie Pasqual of the STILL Project.  Read more here.  If you know of someone who is deserving of this recognition be sure to submit a nomination here.  Second quarter nominations will be announced soon.

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Let us not be content to wait and see what will happen, but give us the determination to make the right things happen.

– Horace Mann

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New Jersey Senate approves ‘STILLBIRTH RESEARCH AND DIGNITY ACT’

ASAP Congratulates Debbie Haine Vijayvergiya, a co-founder of the ASAP Coalition on her valliant efforts in her daughter’s memory.  The bill was unanamiously approved by the Senate and will go to the Assembly before crossing the Govenor’s desk for signature.

This bill requires the Department of Health to establish policies and procedures to ensure the dignified and sensitive management of each stillbirth and of a family’s grieving process. It would also require the Health Department to collect information on stillbirths.                                                                                                                                           Click here to read more about this billRead the full text of the bill.

TRENTON – The Senate on Monday approved Senate Majority Leader Loretta Weinberg’s “Autumn Joy Stillbirth Research and Dignity Act,” a bill that would provide needed research to find out more about stillbirths and set policies for the respectful treatment of families who experience the trauma of stillbirths. The bill, S-2843, was sent to the Assembly with a vote of 39 to 0.
 
“Families experiencing a stillbirth can suffer severe anguish and many hospitals and health care facilities are not prepared to treat them with the sensitivity and dignity they need,” said Senator Weinberg. “This will establish policies and procedures to help them through this trauma and it will provide for the collection of information to learn more about these fetal deaths.”
 
Stillbirths are unintended fetal deaths that occur after 20 weeks of pregnancy or involve the unintended death of a fetus weighing 350 grams or more. Approximately one in every 160 pregnancies in the United States ends in stillbirth each year, a rate which is high compared with other developed countries.
 
Families experiencing a stillbirth suffer severe anguish, and many health care facilities in the state do not adequately ensure that they are treated with sensitivity and informed about what to expect when a stillbirth occurs, Senator Weinberg said.
 
“Although studies have identified many factors that may cause stillbirths, researchers still do not know the causes of a majority of them,” said Senator Weinberg. “This bill will have information collected and made available to researchers seeking to prevent and reduce the incidence of stillbirths.”
 
The issue was brought to the attention of Senator Weinberg by Debra Haine Vijayvergiya, who suffered a stillbirth in 2011.
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Every Mother Counts talks about stillbirth…..

The following article was published by Every Mother Counts recently.  Debbie is one of the originators of the ASAP Coalition!  We congratulate her on getting the word out with this important organization and for her success with the New Jersey State Legislature.

Every Mother Counts Staff

June 7, 2013

Debbie HaineWhen Autumn Joy died at 22 weeks gestation from an umbilical cord anomaly, her mother, Debbie Haine, was shocked.  As she delivered her baby and processed her grief, Debbie was astounded by how little awareness she’d had and conversation there was around the subject of stillbirth.  As she dealt with insensitive treatment in the hospital, she was angered by the lack of compassionate and professional stillbirth standards of care for hospital personnel working with grief stricken families.  As time went by, Debbie grew frustrated by the lack of resources, research and accountability she found specifically associated with the subject of stillbirth.

Debbie had two early miscarriages and understood how difficult it is for women to discuss, but the subject of stillbirth simply never came up.  “It was never a topic of conversation.  I didn’t even know what stillbirth was. Even as I was recovering from my daughter’s birth and grieving, I never heard anything about stillbirth.  Everything I read and all of my doctors used the clinical term ‘fetal demise’ to talk about it.  There was nothing touchy-feely about those words.  As I met other women who’d gone through the same experience as I had, ‘stillbirth’ was the word they used that made the experience less medical and more personal.”

Autumn was stillborn in July 2011 and that’s when Debbie’s commitment to help other mothers avoid this tragedy began.  After extensive research, she became a presenter at the 2012 International Conference on Stillbirth, SIDS, and Infant Survival.  While there, she met a group of supportive women, healthcare professionals and advocates that shared her focus on creating awareness around stillbirth and together they formed the ASAP Coalition to raise awareness and improve outcomes in stillbirth.  Debbie says, “I want there to be as much awareness around stillbirth as there is about SIDS.  Everybody knows about Sudden Infant Death Syndrome.  Nobody talks about how to avoid stillbirth.”  One of ASAP’s first initiatives was to create a nationwide campaign for stillbirth awareness and education.

Debbie says, “The statistics are shocking. Approximately 26,000 babies a year, 70 each day… are stillborn in the U.S. alone.  That’s more than all the deaths from Sudden Infant Death (SIDS) and prematurity combined. Many of these babies are of viable gestational age. I’ve met women whose babies died on their due dates when previously they’d been completely normal.  It is often assumed and talked about that stillbirth can’t be predicted or avoided. However, there are a number of things that can be done to reduce the risk and we are learning more each year.  Pregnant moms who are at high risk can be more closely monitored.  Physicians can be more careful about monitoring fetal growth. More than half of all stillbirths occur to babies with intrauterine growth restriction.”

In addition to working with ASAP to raise awareness, Debbie helped draft legislation called the Autumn Joy Stillbirth Research and Dignity Act, which was introduced last month by Sentate Majority leader Loretta Weinberg (D-NJ) and co-sponsored by Senator Dawn Marie Addiego (R-NJ). Debbie will be testifying in front of the Senate Health Committee on June 13th and she had her ASAP colleagues are working to form an interagency meeting between the National Institutes of Health, the Centers for Disease Control and the Health Resources and Services Administration.

It’s a a tragedy that Debbie has become a flag bearer for stillbirth, but we think she’s the powerful force needed to bring this painful subject the level of attention is deserves. We’ll be thinking about Debbie and Autumn on June 13th as she speaks for thousands of grieving families and we’ll be there in spirit to provide our support.

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Vote to Shatter the Silence Surrounding Stillbirth…

Stephanie Cole, an ASAP Coalition member is a contender for the MASK (Mothers Awareness On Schoolaged Kids) Unity Award.  Please vote for Stephanie Cole to win the Unity Award and shatter the silence surrounding stillbirth and infant death.

There is just one week left before voting closes and a winner is chosen. We can win this with your help!!! Vote and share every day from now until March 1st. Thank you for your support! http://www.maskmatters.org/stephanie-cole

About Stephanie Cole

Stephanie ColeStephanie Cole is an artist, activist, and above all, a mother.

She is the proud mama of four amazing and beautiful children.  Her first child, Madeline Jonna, died one week after her due date in January 2007. Since that difficult time, she has brought three wonderful little boys into the world and though they have added more color and joy to her life than she could ever have imagined was possible, her heart still aches for the daughter she never brought home.

Since Madeline’s death Stephanie has been dedicated to honoring her daughter’s short but precious life by working to improve the way stillbirths are handled at the hospital and in the community.  Ms. Cole created Sweet Pea Project, a nonprofit organization that offers comfort, support and gentle guidance to families who have experienced the death of a baby, in January 2009.  The organization has grown immensely since then.  The Sweet Pea Project has donated nearly 4,500 baby blankets to hospitals across the country, so that bereaved parents have something soft and sacred to swaddle their baby in when they hold her/him for the first and only time.  They have also donated copies of Stephanie Cole’s book, Still., which was published in 2010.  Since the books release, over 1,500 copies have been donated to hospitals, bereavement organizations and individuals all across the world.  It Stephanie’s hope that the book, which is a portrait of the first year of her life after Madeline’s death told through her journal entries, poetry and artwork, will help other bereaved mothers feel less alone in their grief.  Sweet Pea Project also holds several community events, such as our annual children’s picnic and annual remembrance gathering, which offers families a chance to come together with others who understand and honor the children they so deeply love and desperately miss.  Of course none of this will ever make the death of a baby okay, but it is Stephanie’s hope that it will help to create a more supportive and compassionate community for the families left behind.

And for Stephanie Cole, working with Sweet Pea Project has given her an opportunity to continue parenting her daughter by mothering her memory.  To most people Stephanie is Ben, Nathaniel & Ethan’s mom, because they see her running around with them every day.  But because of the work with Sweet Pea Project, there are people across the world who know her as Madeline’s mom.  For that,  she is so very grateful.

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Research Opportunity…..

New RESEARCH Opportunity – posted on behalf of Jennifer Huberty, PhD, an ASAP Coalition member of Arizona State University…… please consider participating in this important study and passing it along to others….

Have you experienced perinatal loss (loss of a baby shortly before or after birth) within the past year? Do you know a woman who has experienced perinatal loss within the past year?

We are looking for women who have experienced perinatal loss to participate in an interview related to health and physical activity behaviors. If you do not reside in Omaha, NE you can participate over the phone.

To participate in the study please contact
Dr. Jennifer Huberty, PhD at jennifer.huberty@asu.edu
602-827-2456
or
Katherine Rolfsmeyer at info@befitminded.com

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STILL Project Trailer Released

STILL Project Trailer Released
We salute the work of the STILL Project, an ASAP Coalition member, on the release of the trailer for their full feature length film.  The ASAP Coalition and its’ members are all committed to raising stillbirth awareness and encouraging prevention research & initiatives.  This film will definately help to bring stillbirth out of the shadows.
We encourage you to watch the trailer and share with your friends, family and social media contacts.  AND – please consider donating to the final production costs for the full feature film so that it can be completed and released as soon as possible.
And more about the STILL Project – from their website…..

STILL is a feature length documentary film project aimed at breaking the cycle of silence surrounding pregnancy and infant loss. STILL will examine the effects of a grief avoidant society and will educate through organic experience.

STILL will tell the stories of individuals and families from all walks of life who have suffered the death of a baby during pregnancy or infancy.

Any death is tragic. Losing a child by any means is devastating. But the loss of a baby is also the death of dreams, hopes and possibilities. And often times the death of a baby becomes the birth of isolation and misunderstanding.

STILL is for those who grieve as well as those who want to reach out and understand.

STILL represents the silence of the babies who have died and the steadfast resilience of their surviving families.
SAY IT OUT LOUD!

 

Action for Stillbirth Awareness & Prevention The ASAP Coalition
info@stopstillbirthasap.org phone: 952-715-7731
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ASAP Coalition Call to Action – FMLA Amendment

ASAP Coalition – Call To Action! 

A major initiative of the President Bill Clinton’s first term, The Family and Medical Leave Act of 1993 (FMLA) is a US federal law requiring covered employers to provide employees job-protected and unpaid leave for qualified medical and family reasons. Qualified medical and family reasons include: personal or family illness, family military leave, pregnancy, adoption, or the foster care placement of a child.   The FMLA was intended “to balance the demands of the workplace with the needs of families.”  The Act allows eligible employees to take up to 12 work weeks of unpaid leave during any 12-month period to attend to the serious health condition of the employee, parent, spouse or child, or for pregnancy or care of a newborn child, or for adoption or foster care of a child.

The issue with the current FMLA is the fact that it doesn’t extend its’ benefits to employees that have experienced the death of a child. 

Our friends at the Grieving Dad’s Project, an ASAP member, are working hard to encourage congress to pass the Parental Bereavement Leave (The Farley-Kluger Initiative to Amend the FMLA).  The ASAP Coalition is honored to support them in this endeavor.

“It is my strong opinion that the death of a child is one of the worst experiences that anyone can endure. I find it unacceptable that the death of a child is not included as a protected reason to qualify for the benefits that are set forth in the Family Medical Leave Act of 1993.” -Kelly Farley, Grieving Dad’s Project
Please click here to sign the petition to Congress to support the Parental Bereavement Leave Act as proposed in both the Senate and House that supports extension of coverage and existing benefits allowed by FMLA to employees that have experienced the death of a child.
Please sign the petition now and share with your family and friends. If you have a website please consider placing the petition widget on your website as well.
This is just one example of why the ASAP Coalition is so important – to join our voices and support the endeavors of all coalition members. 
Please encourage your colleagues, friends and family to join the ASAP Coalition.
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ASAP Coalition Organizers Meet in Baltimore

Coalition Organizers Meet in Baltimore
Thank you for joining ASAP and showing your support for increasing stillbirth awareness and encouraging prevention strategies. The organizing groups met as the steering committee this past weekend and worked hard to formulate a foundational structure.  In a short 24 hours we were able to formally adopt our coalition name, mission, vision and goals and a website has been started and will develop as we go.  But, even before this meeting we were working hard behind the scenes on important projects…..
1.   In early February we will be presenting the concept of a national camapaign for stillbirth awareness and prevention to an important Advisory Committee of the Eunice Kennedy Shriver National Institute of Child Health and Human Development.  We know they will consider so many worthy projects, but we are confident that at the very least our proposal is strong, the need is great and at a minimum it will gain valuable attention for stillbirth.  Stay tuned for an update in this regard following the meeting. (Prayers and positive energies for a successful proposal appreciated!)
2.  We are actively looking into a number of grants and other funding opportunities to support ASAP efforts.  More information on this later as well.
At the meeting last weekend we identified 3 functioning committees focusing on awareness, prevention and coalition expansion & operations. Going forward there will be opportunities for interested individuals to become involved as desired.
The ASAP Coalition is not intended to overshadow any individual or organizational efforts toward our common objectives, but to support and raise each other up for the good work that happens every day.  In addition we will organize opportunities where we, as a coalition can speak with a collective voice much louder than any one group, organization or individual.
For this reason, the steering committee has decided that we will feature and recognize our membership going forward on a regular basis for outstanding efforts and projects.  More will be forthcoming on this in the near future.
And finally, many of you have asked how you can help today.  Because our founding principle is built on strength in numbers, we need you to help us grow the coalition.  Will you commit today to bring 3 new people, groups or organizations into ASAP?  Remember, there is no obligation other than to show support for a common conern through a common voice.  Opportunities will be forth coming to spring into action and each member can choose to be involved as they desire at those times.  Direct those you know that share our concern and interest in stillbirth awareness & prevention to our website at http://www.stopstillbirthasap.org/ to join.
Alone we grieve, together we can do so much more!
For more information contact:Action for Stillbirth Awareness & Prevention http://www.stopstillbirthasap.org/ phone: 952-715-7731
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Join us to take Action for Stillbirth Awareness & Prevention

Dear Colleagues and Friends:
We want and need your help.
One in every 160 babies is stillborn in the United States, or nearly 26,000 annually. The tragedy of this “silent epidemic” can no longer wait for attention. Parents, grandparents, organizational leaders, and health professionals are advocating that we work together to address the issues.
At this time of year when the world revolves around families and children, won’t you please take a few moments to review the information using this link and join ASAP – Action for Stillbirth Awareness & Prevention.
This is not an appeal for money. It is a plea for you to join us in a nationwide campaign to educate and advocate for attention to the issues, with one strong voice for these unborn, much loved children.  Please feel free to contact us at the email/phone below if you have any questions.
Thank you.
For ASAP – Action for Stillbirth Awareness & Prevention,
Marian Sokol, PhD – First Candle
Shauna Libsack – Star Legacy Foundation
Interim Co-Chairs
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