Stillbirth Support

Grief Support

Books to Help You Heal

Empty Cradle, Broken Heart, Surviving the Death of Your Baby, by Deborah L. Davis
http://www.amazon.com/Empty-Cradle-Broken-Revised-Edition/dp/1555913024/ref=pd_sim_b_1?ie=UTF8&refRID=1XFBRK6FEVVEC6QP37SW
When Hello Means Goodbye, by Paul Kirk

Still to Be Born, by Pat Schwiebert

 A Guide For Fathers: When A Baby Dies, by Tim Nelson

 A Grandparent's Sorrow, by R.N. and Pat Schwiebert




Stillbirth Support Groups
Daily Strength
http://www.dailystrength.org/c/Stillbirth/support-group
First Candle
http://www.firstcandle.org/grieving-families/

Help Stop Stillbirth

Organizations

Star Legacy Foundation
http://starlegacyfoundation.org/

International Stillbirth Alliance
http://www.stillbirthalliance.org/


Current Events

January 2016

Star Legacy Gala and STAR Awards set for February 13    Join us for an amazing opportunity to celebrate those who do so much and honor parents who have experienced the loss of a baby. The firstStar Legacy Foundation Gala aims to honor survivors and champions of pregnancy and infant loss. Plan to celebrate with us on Saturday, February 13, 2016, 6:00 p.m. at Green Acres Event Center in Eden Prairie, Minnesota. Tickets include valet parking, cocktail reception, silent auction, three-course dinner, awards presentation, entertainment, live music and dancing! View the nominees for our STAR Awards.  Tickets and sponsorship opportunities are still available, as well as ways to memorialize a baby at the event. We hope you can join us!  Help make us a Top-Rated nonprofit again  Each year, the charity review website GreatNonprofits, awards organizations deemed to be Top Nonprofits based on reviews. Star Legacy Foundation has been honored with this award the last three years and we’d love for it to continue in 2016!  One of the criteria is that we are required to have new reviews each year that rank us four or five stars. This is how you can help. If you have not previously submitted a review for us, please take two minutes to rate us and write a review. If you know of others who would be willing to help us achieve this designation, please ask them to right a short review.  We have heard from many donors, grant organizations, and supporters that achieving this status from Great Nonprofits plays a role in their decision to support us. It only take a few minutes, but can make a significant difference in our ability to accomplish our goals!  New York metro chapter established  We’ve been approached a number of times in the past about starting regional chapters of Star Legacy Foundation but the timing just didn’t feel right until now. In the last two years we have made significant changes to our operations and feel that we are now better positioned to move in this direction.  We consider ourselves a national organization in that we have volunteers from coast to coast and into Canada who work on our behalf in an informal way. Because we are located in Minnesota much of our programming gets started here simply because we have a critical mass of feet on the ground to implement programs, work out the bugs and make things happen. We would love to expand much of what we do to other areas in a more formal way but to do that requires a corresponding group of feet on the ground. We would like to eventually use our resources in Minnesota to be something of a project incubator to grow and expand projects into other areas. Chapters around the country seems to be the best way to accomplish that objective.  Learn more about our chapter vision.  We currently have one fully charted chapter in New York/Connecticut. Established in July 2015, this group of motivated parents, grandparents and friends of stillborn babies carries on the mission to educate the medical community and public about stillbirth, raise funds for research and provide support to families who are dealing with this loss.    Members of the recently established New York area chapter, left to right: Phillipa Martin, Eleni Michailidis (medical chair), Theresa Juva-Brown (media/communications chair), Samantha Durante Banerjee (chapter vice chair), Hilary Hughes (chapter chair), Amanda Donohue (fundraising chair), Lourdes Sanchez.  Ask the Expert Q&A  We frequently field questions from many families and we work hard to get them the answers they want. We have an amazing Board of Directors and Medical Advisory Board with a wealth of expertise to share. Have a question for your experts? Ask it on our Ask the Experts page of our website.  Question: I’m afraid to get pregnant again. How will I ever love another baby? If I’m scared will it harm my baby? Answer: Getting pregnant again is always scary because now you know babies can die. It is a normal feeling and does not negate that you will not love another baby, just that you will always want your deceased baby back too. Any parent that is pregnant for a second time will have the same feelings; How will I ever love another baby as much as I love my first child? He/she is so perfect. But there is always room in our hearts for more love. The baby that follows will be just as special.  Anxiety and fear of another loss during pregnancy is a normal response after a loss and needs to be acknowledged. Will this harm the baby? I believe first and foremost your unborn baby will feel your love and need to protect him or her during pregnancy. Find ways to help with anxiety such as massage, guided imagery, yoga and attending a support group with other parents who will have the same feelings and normalize what others may view as abnormal behaviors. That is a place where you can still talk about being a parent to your deceased baby while you move through the pregnancy with the new sibling.  Answer by Dr. Joann O’Leary  Upcoming Events  We are fortunate to have Champions across the country who bring us together to remember our babies and raise awareness. Join us for these upcoming fundraising and awareness events by participating, contributing or volunteering! If you are able to volunteer your talents at the event in your area or would like to lead an event to bring your local community together please contact us.  February 13 - Star Legacy Foundation Gala, Eden Prairie, Minnesota  Testimonials  One of our five-star reviews from GreatNonprofits: "As a mother of a stillborn baby I am so thankful for the work that Star Legacy is doing to increase awareness of stillbirths, do important research, and provide support to families and those who are impacted by the loss of a baby. After we lost our son at 34 weeks gestation we began looking into organizations who could provide support and change and Star Legacy has been able to do just that." Petition pushes for FMLA amendment  Grieving parents deserve the time to mourn the loss of their child! House bill HR2260 Senate bill S1302, known as The Farley-Kluger Act sits in committee with sponsors from both sides of the aisle, but we need Ranking Committee Chairs and leaders in Congress to hold hearings and bring this issue to the floor.Please sign and share this petition with your friends and family. These messages will go straight to the Committee Chairs!

July 2015

Monthly Newsletter July 2015 Stillbirth Matters Blog: Should We Be Scared?  by Lindsey Wimmer, MSN, CPNP, CPLC Star Legacy Foundation Executive Director  “I don’t want to scare my patients.” I hear this from obstetricians on a regular basis. And, at first, it seems caring and comforting. However, as I think about it more, it can be condescending, paternalistic, and unethical. When we are scared, we are simply nervous or concerned about a possible poor outcome or event. Pregnant women are always scared on some level about the health of their babies. This is often seen as a good thing because it’s a motivator to make good choices and follow medical advice. For example, we regularly and easily tell women that smoking, lack of prenatal care, certain diseases, specific medications, etc can harm their baby. That information empowers women to make informed choices. So why are providers hesitant to tell pregnant women that stillbirth can happen, that monitoring fetal movement is a way of monitoring the baby’s well-being, that they have a higher risk for stillbirth, that some concerns are identified on ultrasound, or that women who have had a poor pregnancy outcome have a higher risk of poor outcomes in future pregnancies? I see two main differences. Read more  New Feature! Ask the Expert Q&A  In this issue we are starting a new feature – Ask the Experts. We frequently field questions from many families and we work hard to get them the answers they want. We have an amazing Board of Directors and Medical Advisory Board with a wealth of expertise to share. Have a question for your experts? Ask it on our Ask the Experts pageof our website. Our first question was submitted by Kareen B and we ask our Board Member Emanuel Gaziano, MD, FACOG for the answer. Our sincere thanks to Dr. Gaziano for taking the time to provide this information. Question: How does a doctor keep track of a baby's growth inside the womb and what are things they should look for to be sure the baby is growing normally? Answer: There are two ways to assess growth. The first is by physical examination and the second is by ultrasound. When disturbances in growth are noted specialized tests as a part of ultrasound are possible to assess the degree of growth deviation and to determine whether growth change is affecting key determinants of the baby's health such as the state of oxygenation. Typically, there are changes in uterine size which can be detected by examination. Uterine size can be determined by "bimanual" or internal vaginal abdominal exam up to about 14 weeks. Thereafter, abdominal exam can approximate uterine size to 20 weeks. Classically, the uterus is a the umbilicus by 20 weeks. Thereafter, uterine size corresponds to weeks gestation by the height of the uterus as measured by centimeters from the pubic bone to the top of the uterus. Ultrasound, however, is much more accurate and in order to detect any growth disturbance accurate dates mus be established which is best done by ultrasound during the first trimester. If there is a discrepancy in size between physical means and ultrasound then specialized surveillance is undertaken with testing such as biophysical profile, fetal Doppler, non-stress tests and serial ultrasounds to follow growth. For details on first trimester measurements see: First Trimester: Normal Exam - OB Images. For other details on measurements see: Biometry (14 to 37 wks).  Five Champion fundraising events set for August  Abby's Ride - August 1, Wisconsin Bring your bike, bring a friend and enjoy a 100 mile motorcycle ride through the beautiful Wisconsin countryside! Three stops along the way, a pig roast and live band at the end! Taylor Morgan Hamilton 5K - August 8, Pennsylvania In effort to honor Taylor and spread stillbirth awareness, our family is proud to announce the 2nd Annual Taylor Morgan Hamilton Foundation Walk for Stillbirth Awareness. Registration includes zoo entrance, animal feeding and more!  Let’s Not Be Still! Pregnancy and Infant Loss Awareness Walk - August 8, Nebraska Come and celebrate our babies that have gone too soon. Send a balloon off to your baby in heaven. This is a day of happiness and celebration.  Hiking for Our Little Stars - August 15, California Join us for a beautiful hike in the Las Trampas Regional Wilderness to raise pregnancy and infant loss awareness. Bring your family, friends and a picnic to enjoy the day together. Picnic area reserved. Two trails are available. Dining for our Stars - August 29, Virginia We ask you to join us for an evening of dining, live music and a silent auction as we honor Lucas and other babies lost too soon. Upcoming Events  We are fortunate to have Champions across the country who bring us together to remember our babies and raise awareness. Join us for these upcoming fundraising and awareness events by participating, contributing or volunteering! If you are able to volunteer your talents at the event in your area or would like to lead an event to bring your local community together please contact our Director of Development.  August 1 - Abby's Motorcycle Ride, Iron River, Wisconsin August 8 - Taylor Morgan Hamilton Foundation 5K for Stillbirth Awareness, Norristown, Pennsylvania August 8 - Let's Not Be Still! Awareness Walk , Omaha, Nebraska August 15 - Hiking for Our Little Stars, San Francisco, California August 29 - Dining for Our Stars Farm to Table Dinner and Music, Abingdon, Virginia September 12 - Chanhassen Charity Run, Chanhassen, Minnesota September 19 - Abby's Run, Oulu, Wisconsin September 26 - Let's Not Be Still! Run & Walk For Pregnancy & Infant Loss Awareness, Eden Prairie, Minnesota October 10 - Addyson's Angel Run/Walk, Hudsonville, Michigan October 24 - Abby's Run, Milwaukee, Wisconsin  Testimonials  Star Legacy Foundation has once again been named a Top Nonprofit by the charity review site GreatNonprofits. Thanks to the many of you who have left such positive reviews such as: "We lost our first grandchild to still birth at 41 weeks. Our daughter-in-law went in to the hospital that morning to be induced and was told there was no heartbeat. There were no warning signs, no risk factors, no answers. There were many organizations that provided support. There were many grief groups available (although not many that were specific to grandparents). But the Star Legacy was one of the few that focused on research and finding answers. This is so important! The number of SIDS deaths has been greatly reduced in recent years due to research and education. With the same focus and funding, I believe that someday the same can be said for stillbirth rates!"  Visit GreatNonprofits to read more comments and leave your own. See Me, Feel Me information now available in Spanish  Star Legacy Foundation's See Me, Feel Me campaign provides pregnant women with information and resources to enhance the chances of having a healthy baby. This valuable information is now available inSpanish. Let us know if you would like this in any other language. Star Legacy Let’s Not Be Still Run/Walk set for September 26 - Registration now open  Join us for the 3rd Annual Let's Not Be Still! Run/Walk for Pregnancy & Infant Loss Awareness, Saturday, September 26 in Eden Prairie, Minnesota. Events include a 10K, 5K, 1 mile walk, kids fun run, diaper dash, face painting, team photographs, dedication and memorial event and more! Form a fundraising team and compete for top fundraiser prizes. Can’t join us, sign up for the virtual run! Honor a baby lost too soon by adding the name to the race t-shirts. The Let's Not Be Still! Pregnancy & Infant Loss Awareness Run/Walk brings families together in support and aims to raise awareness about these needless family tragedies. Learn more and register today!All of our awareness events bring families together to support one another and raise awareness about pregnancy loss. Funds raised benefit the Star Legacy Foundation, established in 2005 to raise awareness and support research, education, and prevention initiatives. Come together to make new friends, support each other and celebrate the difference our babies have made! Volunteers are always appreciated!  Healthy Women event held in New York  On June 27th Marjorie Vail, Mrs. New York International 2015, held a fundraiser titled Healthy Women=Healthy World. Marjorie, whose son was stillborn 10 years ago, organized the event to teach women about stillbirth and how to take care of their bodies as well. The day was filled with fun Zumba, Total Body Fitness, Yoga workouts, raffles, vendors and prizes. She was grateful to be able to raise money for much needed research. Marjorie will be competing for the title of Mrs. International on July 25th in Jacksonville, Florida, where she will promote her stillbirth awareness platform. Star Legacy seeks experienced grant writer  Star Legacy Foundation is looking for an experienced grant writer who would be interested in working with us on a number of programs and projects. We are looking for someone with experience in nonprofit grant writing and familiarity with research type grant writing, ideally related to public health and/or health care. If you are interested or know someone who is, please contact us. Meet the Star Legacy Board: Shannon Renfro  Shannon Renfro joined the Star Legacy Foundation Board of Directors in 2011 and brings experience in political advocacy and lobbying as well as a grief counseling certification to better assist Star Legacy families. Shannon currently is the lead for the Star Legacy Foundation Support Line project. Shannon lives in Coastal Virginia with her husband of 10 years, Eric, and 4 children – Jeremy, Irelynn, and Nicholas and Savannah Grace, who was stillborn at 40 weeks and 3 days on May 18, 2009. Shannon graduated from the University of San Diego in 2003 earning a BBS in Marketing with a minor in Political Science.  Since losing Savannah, Shannon has becoming involved in many different volunteer and charitable organizations, including the Junior League of Hampton Roads, 40 Days for Life, and the Eastern Virginia Perinatal Council. She has been invited to speak all over Virginia and Washington DC on her experience in losing Savannah and helps to train doctors, nurses, and chaplains how to better treat patients and families when a baby dies. She feels the best way to honor Savannah is to share her story and to do as much as possible to prevent what happened to her family from happening to others.  Shannon successfully passed legislation in her home state of Virginia – SB 1197 goes into effect on July 1, 2015. Next, she is focusing on working with her local Congressman on a federal bill which would be inclusive of all military and civilian hospitals nationwide.  Contact Shannon at: shannon@starlegacyfoundation.org.

June 2015

Monthly Newsletter June 2015

Stillbirth legislation passes in Minnesota  During Minnesota’s 2015 legislative session, state lawmakers amended a bill to encourage the state’s Maternal and Child Health Advisory Task Force to study stillbirths and how they can be prevented. The bill passed both the house and senate, and was signed into law by Governor Dayton. The Star Legacy Foundation is working to build relationships with the task force and the state Department of Health, in hopes of continuing this recent legislative momentum in Minnesota.  Stillbirth Matters Guest Blog: Promises for My Angel  Guest blog by Chris Duffy, Star Legacy Foundation Board Member, in honor of Father's Day 2015 Reese Christine Duffy was stillborn into the arms of her parents, Chris and Amanda, and big brother Rogen on November 2, 2014, due to an umbilical cord accident. Chris joined the Star Legacy Foundation Board in 2015 and currently serves as the Board Vice Chair. Learn more about the Duffy’s here. On November 2, 2014 at 4:47 p.m., our family was robbed. Robbed of a beautiful red-haired girl with so much potential. Our daughter, Reese Christine Duffy, was born without a heartbeat less than 24 hours before her scheduled delivery. The umbilical cord was wrapped around her neck, but that didn’t stop her from looking like a perfect baby girl. I have always wanted a daughter. I knew I would be good at treating my little girl like a princess, intimidating her boyfriends, and walking her down the aisle with pride. This Father’s Day, it would be easy for me to dwell on the fact that I don’t get to do these things with Reese. But I’ve done enough dwelling over the last seven months. So instead, I’m going to make a list of promises to my cherished daughter.  Read more  Healthy Women=Healthy World June 27 in New York A healthy pregnancy begins with a healthy body. Come learn how to be and stay healthy from the best of the best. Join Mrs. New York International 2015 Marjorie Vail for a fun-filled day of workouts such as Zumba and yoga, guest speakers, vendors and prizes during Healthy Women=Healthy World June 27 in Brooklyn, New York. Proceeds benefit Star Legacy Foundation. Learn more and register today! Upcoming Events  We are fortunate to have Champions across the country who bring us together to remember our babies and raise awareness. Join us for these upcoming fundraising and awareness events by participating, contributing or volunteering! If you are able to volunteer your talents at the event in your area or would like to lead an event to bring your local community together please contact our Director of Development.  June 27 - Healthy Women = Healthy World fundraiser, Brooklyn, New York August 1 - Abby's Motorcycle Ride, Iron River, Wisconsin August 8 - Taylor Morgan Hamilton Foundation 5K for Stillbirth Awareness, Norristown, Pennsylvania August 8 - Let's Not Be Still! Awareness Walk , Omaha, Nebraska August 15 - Hiking for Our Little Stars, San Francisco, California August 29 - Dining for Our Stars Farm to Table Dinner and Music, Abingdon, Virginia Fall - New event coming to Hillsboro, North Carolina September 19 - Abby's Run, Oulu, Wisconsin September 26 - Let's Not Be Still! Run & Walk For Pregnancy & Infant Loss Awareness, Eden Prairie, Minnesota October 10 - Addyson's Angel Run/Walk, Grand Rapids, Michigan October 24 - Abby's Run, Milwaukee, Wisconsin January 2016 - New event coming to Phoenix, Arizona  Testimonials  Star Legacy Foundation has once again been named a Top Nonprofit by the charity review site GreatNonprofits. Thanks to the many of you who have left such positive reviews such as: "As a parent who knows the pain and life changing effects of stillbirth, I was so happy to learn about the Star Legacy Foundation. The organization does really important work in pushing for research, awareness and pursuing the changes that need to be made in the medical community to decrease the number of babies that die. As an advocate and film maker, I've been fortunate to work with Star Legacy and get to know the real people who make up this incredible group. They are who they say they are, and they work hard for what they believe in."  Visit GreatNonprofits to read more comments and leave your own.

Event recaps: Cael's Ride and Mary-Alice 5K Despite the morning rain, there was a great turn out for the first ever Cael's Ride for Stillbirth on June 13 in Minnesota. There were more than 50 bikes participating. Special thanks to all volunteers, the road guards, Maple Grove Hospital, Trouble's, Brickyard, Mac & Chesters SRO, all the companies that donated to our raffle, Kind, Aspire, and the Star Legacy Foundation. Next year's ride is already being planned! View more photos and information on the Facebook page. Nurses grieve too When a baby dies before birth or shortly thereafter nurses, family and friends grieve deeply. But perhaps less recognized is the grief borne by the clinic and hospital staff who care for these families. The work they do for these families is nothing short of heroic and we honor them for everything they do to guide families on the first few days of their lifetime journey.  One such hospital is Maple Grove Hospital in Maple Grove, Minnesota. This hospital has recognized the importance of this difficult work and has provided for a critical position to support the families and the staff who care for them. Sue Steen, Perinatal Nurse Navigator was the obvious choice as she has been involved in perinatal loss at the hospital level for many years. According to Lindsey Wimmer, Executive Director of the Star Legacy Foundation, “Sue is a very special person and the nurses and patients at Maple Grove Hospital are so very lucky that she truly ‘gets it’ and supports them throughout their difficult journey.”  In April Sue planned a two-day retreat for her specially trained perinatal loss staff. Star Legacy Foundation was honored to be asked to participate in this event and provided sponsorship to help underwrite the event costs. We were so profoundly touched as we got to know these nurses better – so much that we have now decided that we want to make these opportunities available for staff caring for perinatal loss patients at other facilities. If you would like to see such an event held for your hospital, please let us know!  Comments on this year's event: - “Thank you thank you thank you – more than words can say. Wonderful people, great information – Loved it” - “Thank you so much for helping our staff have a retreat. It was a wonderful time to learn, share, listen, brainstorm, grieve, and acknowledge good in a setting conducive to relaxation and comfort. Hearing your story was profound and is still impacting nurses. Keep it up.”

May 2015

Monthly Newsletter May 2015

Thank you to our Champion mothers  Mother’s Day can be difficult for many of us as we remember our babies. We miss them greatly and yet we continue to mother them daily through our community effort to support one another, create stillbirth awareness and fund research. We take this opportunity to honor all mothers this Mother's Day month and recognize those women and families who have come forward as Star Legacy Champions to create awareness as they remember their children. The following Champions have stepped up in their community to lead a Star Legacy stillbirth awareness event. Thank you for your strength. You have taken one of life’s most difficult experiences and put it to work for good.  Hilary Hughes - Oliver's 5K, New York Brittany Sigmundik - Cael's Ride, Minnesota Tandy Pratt - Mary-Alice & Friends 5K, North Dakota Marjorie Vail - Healthy Women = Healthy World, New York  Mindy Mueller - Abby's Ride and Abby's Run, Wisconsin  Latifa Hamilton - Taylor Morgan Hamilton Foundation 5K, Pennsylvania Angie Butler and Amy Kent - Let's Not Be Still! Walk, Nebraska Rach Maniago-Earls - Hiking for our Little Stars, California Amanda Snodgrass - Dining for Our Stars, Virginia Sarai Vanderwood -  Addyson's Angel Run/Walk, Michigan  Lindsey Smith, North Carolina Jen Huberty, Arizona And be sure to read our June newsletter as we take the opportunity to recognize fathers! Stillbirth Matters Guest Blog: Mother's Day  Guest blog by Shannon Renfro, Star Legacy Foundation Board Member  May is my favorite month. In springtime, flowers are blooming, birds are singing, and there are signs everywhere of new life.  It is a wonderful time to celebrate new beginnings and make new memories. It is the month we celebrate Mother’s Day, which honors all Mothers, Grandmothers, Stepmothers, Adoptive Mothers, and more. For me, Mother’s Day is a day that brings up many emotions – the gratefulness of my living children, a reminder of my struggles with infertility, and the stinging heartbreak of knowing that one of my children is not with us.  There are so many different types of Mother’s and sadly, some go unrecognized. “Being a Mother is not defined by the number of children that you see, but by those you hold in your heart.”  In my heart, I hold 9 children, although you can only see 3.  I make a point on this day to recognize all of my friends who are Moms, especially those who hold their babies in their heart. Read more  Fundraisers set for June 13 in Minnesota and North Dakota  Cael’s Angels Association's First Annual Motorcycle Run and Pig Roast - Please join us for our inaugural Cael’s Ride for Stillbirth June 13. We will be starting the ride at Maple Grove Hospital, Hospital Drive, Maple Grove, Minnesota. This is the birth place of Cael and many other baby angels. They have graciously offered to have us start here. From there we will ride west, north, east, and south to some nice locations for some socializing, food and good fun. Learn more and register today!  Mary-Alice and Friends 5K - Named after Mary-Alice Marie Pratt, who was stillborn on April 1, 2008, this event’s purpose is to support The Star Legacy Foundation’s mission to increase awareness, support research, education, and family advocacy regarding stillbirth. This event is to honor all children who are stillborn in our community. We gather to remember them.  It’s also to honor the parents and family of stillborn and miscarried babies because we all understand the difficulty that comes with this type of tragedy. Not in the Fargo area? You can still participate! There is also a Virtual 5K that you can walk or run any time. You register, receive your event t-shirt and complete your run/walk when you choose. Then to help create more awareness you take a picture before, during, or after your run/walk and post it to social media using the hashtag #stillbirthmatters. Learn more and register today!  Upcoming Events  We are fortunate to have Champions across the country who bring us together to remember our babies and raise awareness. Join us for these upcoming fundraising and awareness events by participating, contributing or volunteering! If you are able to volunteer your talents at the event in your area or would like to lead an event to bring your local community together please contact our Director of Development.  June 13 - Mary-Alice & Friends 5K for Stillbirth Research and Awareness, Fargo, North Dakota June 13 - Cael's Ride for Stillbirth, Maple Grove, Minnesota June 27 - Healthy Women = Healthy World fundraiser, Brooklyn, New York August 1 - Abby's Motorcycle Ride, Iron River, Wisconsin August 8 - Taylor Morgan Hamilton Foundation 5K for Stillbirth Awareness, Norristown, Pennsylvania August 8 - Let's Not Be Still! Awareness Walk  , Omaha, Nebraska August 15 - Hiking for Our Little Stars, San Francisco, California August 29 - Dining for Our Stars Farm to Table Dinner and Music, Abingdon, Virginia Fall - New event coming to Hillsboro, North Carolina September 19 - Abby's Run, Oulu, Wisconsin September 26 - Let's Not Be Still! Run & Walk For Pregnancy & Infant Loss Awareness, Eden Prairie, Minnesota October 10 -  Addyson's Angel Run/Walk, Grand Rapids, Michigan October 24 - Abby's Run, Milwaukee, Wisconsin January 2016 - New event coming to Phoenix, Arizona  Testimonials  Star Legacy Foundation has once again been named a Top Nonprofit by the charity review site GreatNonprofits. Thanks to the many of you who have left such positive reviews such as: "I never dreamed I'd ever look for this organization but it has been a life-saver for me. I lost my only child to stillbirth in 2011 and I will likely never have another chance to be a mother. As an older mother I knew I was a high risk pregnancy but no one ever told me that it could end in stillbirth. Lindsey at the Star Legacy Foundation immediately returned my call and has been there for me since that time. She is a nurse practitioner as well as a stillbirth mom and she helped me understand the medical issues that I had no way of understanding and none of my providers explained. She totally 'gets it' from both the medical and personal side of the issue." Visit GreatNonprofits to read more comments and leave your own.

First Oliver's Run/Walk 5K in New York raises thousands Hilary and Tyler Hughes held the first Oliver's Run/Walk 5K in South Salem, New York on May 2. More than 120 participants raised nearly $35,000 for Star Legacy Foundation to support stillbirth awareness and research. The event is held in memory of Oliver Cohlan Hughes, stillborn January 25, 2013.  Several support groups offered through 11 Angels  Star Legacy Foundation offers a number of support groups and has additional groups coming in the near future. Support groups are free to attend but we do ask for pre-registration. Refer to our  calendar to register or for information about any upcoming support groups. All groups are facilitated by professionals with special training and insight into perinatal loss. Support group facilitators are Joann O’Leary, PhD, MPH and  Lindsey Henke, MSW. Read Lindsey's blog, 23 Things I Wish Someone Told Me About Pregnancy After Loss. Star Legacy Foundation support groups are coordinated by our 11 Angels Team. Contact us if you are interested in starting a group in your location. Current groups that meet in Eden Prairie, Minnesota include: Bereaved parents; Grandparents, extended family & friends; Pregnancy After Loss and additional planned groups include: men’s support group; Parenting after loss; Premie support group; Sibling support group; and Cultural support groups for Hmong, Spanish and Somali groups.

April 2015

Monthly Newsletter April 2015

Proceedings of 2014 Stillbirth Summit published  The proceedings from the 2014 Star Legacy Foundation sponsored Stillbirth Summit have been published. BMC Pregnancy and Childbirth publishes selected collections of research articles, conference proceedings, reviews and reports as supplements, which are free to access online. All articles published in supplements are subject to peer review; meeting abstracts undergo review and selection by the conference. Volume 15 Supplement 1 features the full text proceedings and meeting abstracts from the Summit held in June 2014 in Minnesota. BMC Pregnancy and Childbirth is an open access, peer-reviewed journal that considers articles on all aspects of pregnancy and childbirth. See the below article on how you can offer your suggestions for the next Stillbirth Summit.  Oliver's 5K Run/Walk for stillbirth awareness to be held May 2  Oliver's 5K Run/Walk will be held Saturday, May 2, 9:00 a.m., Meadow Pond Elementary School, 185 Smith Ridge Road, South Salem, New York. The Hughes Family Story: Our son Oliver Cohlan Hughes was born still on January 25, 2013 at 34 weeks gestation. After 34 weeks, with no medical issues and a normal pregnancy this was a shocking and an extremely difficult thing for us to deal with. It is our hope that other parents and babies will not have to go through such a devastating loss of child. Stillbirths can be prevented, but more research needs to be funded! We are hoping to be able to do a small part by hosting this event and with your participation we will make a difference!All money raised for this event will be donated directly to the Star Legacy Foundation (a 501(c)(3) non-profit organization. This organization is dedicated to stillbirth awareness, research, education, prevention and family support. Star Legacy Foundation is a community of parents, families, and friends of stillborn babies who are dedicated to reducing the number of families impacted by stillbirth, a needless tragedy.Not a day goes by that we do not love and remember Oliver. Your participation in this event will enable us to honor Oliver’s memory by raising critical funds for stillbirth research and awareness. In this wayyou can help make a difference. We truly appreciate the support of our friends and family. - Hilary, Tyler and Carter Hughes Learn more and register for Oliver's Walk.  Virginia passes, Minnesota makes progress on stillbirth law Virginia - Congratulations to Star Legacy Foundation board member Shannon Renfro for successfully shepherding LB1197 through the Virginia legislature! The bill becomes effective July 1st! SUMMARY AS PASSED: Stillbirths; data collection; policies. Requires the Virginia Congenital Anomalies Reporting and Education System to collect data on stillbirths. The bill defines a stillbirth as an unintended, intrauterine fetal death occurring after a gestational period of 20 weeks. The bill also requires the State Board of Health to adopt regulations that require any hospital that provides obstetrical services to establish policies to follow when a stillbirth occurs that meet the guidelines pertaining to counseling patients and their families and other aspects of managing stillbirths as may be specified by the Board in its regulations. Minnesota - The Star Legacy Foundation has been working with legislators to introduce bills in both the house and senate that would establish a Stillbirth Task Force to study issues related to stillbirth awareness and prevention in Minnesota. As of April 2: The house and senate bills calling for stand-alone stillbirth task forces will likely not be heard this year but will still be on the docket next session. However, the house/senate bills with stillbirth work group amendments to the existing Maternal Child Health Task Force will likely be included in the Ombudsman bill that will be voted on before the end of the session. All indications are very positive that this will be a successful amendment! Continue to contact your legislators! Read the Star Tribune article about the stillbirth legislative efforts. Input sought for next Stillbirth Summit  Star Legacy Foundation is eagerly planning for the future and our upcoming projects and events. The Stillbirth Summit is one of our major projects and we strive to make it better each time. To that end, we would like your feedback as we begin preparing for the next Stillbirth Summit. Please take a few minutes to complete a brief survey and help us create an event that meets your needs! The Star Legacy Foundation Stillbirth Summit is an educational and networking event that draws more than 300 interdisciplinary professionals, advocates and families. Researchers share data related to stillbirth prevention and postpartum care and bereavement. As part of our goals and objectives for 2015, we would like to identify how the Stillbirth Summit could better meet the needs of the participants. In order to decide what changes should be made for future summits, we would like your input. Please feel free to forward this link on to others who would like to contribute to or attend the next Stillbirth Summit. We appreciate your continued support!   Upcoming Events  We are fortunate to have Champions across the country who bring us together to remember our babies and raise awareness. Join us for these upcoming fundraising and awareness events by participating, contributing or volunteering! If you are able to volunteer your talents at the event in your area or would like to lead an event to bring your local community together please contact our Director of Development.   May 2 - Oliver's 5K Run/Walk, South Salem, New York June 13 - Mary-Alice & Friends 5K for Stillbirth Research and Awareness, Fargo, North Dakota June 13 - Cael's Ride for Stillbirth, Maple Grove Minnesota June 27 - Healthy Women- Healthy World fundraiser, Brooklyn, New York August 1 - Abby's Motorcycle Ride, Iron River, Wisconsin August 8 - Taylor Morgan Hamilton Foundation 5K for Stillbirth Awareness, Norristown, Pennsylvania August 8 - New event coming to Omaha, Nebraska August 15 - Let's Not Be Still! Awareness Hike, San Francisco, California Fall - New event coming to Hillsboro, North Carolina Fall- Outdoor Evening of Support, Abingdon, Virginia September 19 - Abby's Run, Oulu, Wisconsin September 26 - Let's Not Be Still! Run & Walk For Pregnancy & Infant Loss Awareness, Eden Prairie, Minnesota October 10 -  Addyson's Angel Run/Walk, Grand Rapids, Michigan October 24 - Abby's Run, Milwaukee, Wisconsin January 2016 - New event coming to Phoenix, Arizona  Testimonials  Star Legacy Foundation has once again been named a Top Nonprofit by the charity review site GreatNonprofits. Thanks to the many of you who have left such positive reviews such as: “As a parent who knows the pain and life changing effects of stillbirth, I was so happy to learn about the Star Legacy Foundation. The organization does really important work in pushing for research, awareness and pursuing the changes that need to be made in the medical community to decrease the number of babies that die. As an advocate and film maker, I've been fortunate to work with Star Legacy and get to know the real people who make up this incredible group. They are who they say they are, and they work hard for what they believe in.” Visit GreatNonprofits to read more comments and leave your own.

Support groups for bereaved families  The Star Legacy Foundation announces three new support groups for families who have experienced stillbirth or neonatal loss. The Bereaved Parents group is for parents of babies who have died before their birth (stillbirth) or those who only live a short time after birth. This group will meet at the Star Bank in Eden Prairie on the second and fourth Tuesday of each month at 7:30 pm. The Pregnancy After Loss group is for parents who are in a pregnancy following stillbirth or neonatal loss and will meet at the Star Bank every Tuesday at 6:00 pm. The Grandparents and Extended Family group is for those that are grieving the loss of a child to stillbirth or neonatal loss and at the same time they want to know how to best support the parents of the baby. The group will meet monthly on the first Tuesday of each month at 7:30 pm at the Star Bank. Meetings are free and open to all who have experienced the loss of a baby no matter how long ago the loss occurred. All groups are led by trained professionals. The Star Bank in Eden Prairie is located at 250 Prairie Center Drive. For more details visit www.starlegacyfoundation.org or call 952-715-7731.

March 2015

Star Legacy Foundation Newsletter  ★  March 2015

Stillbirth Matters Guest Blog: Home Fetal Monitoring and One Devoted Grandfather, Dr. Jason Collins  Editor's Note: This month we are honored to have a guest blog by someone who knew all too well the story about stillbirth – she has lived it her entire life as she watched her father push forward his passion for preventing these needless tragedies. And then she had her own brush with tragedy . . . by Catherine Alford  I’ve been hearing all of your stories – your stories of loss, love, sadness, and eventual triumph – my entire life. My dad, Dr. Jason Collins, started his research on umbilical cord accidents when I was only 5 years old. In fact, I was so used to him staying up late every night looking at heart rate strips that I used to draw him pictures of them and tape them to his bedroom wall so he’d see them before he went to bed. It was far more exciting than drawing him stick figures, and he thoroughly enjoyed them.   My dad has been trying to solve this problem, this terrible, preventable problem of umbilical cord accidents for such a long time. It has been his life’s work, his obsession, and his amazing gift to medicine. When I was a kid, we had a phone in our kitchen connected to the wall with a really long cord. This was back before cell phones of course. Every time other physicians would come over to the house, my dad would try to explain what happens to a baby in utero with a UCA using the phone cord. He would wrap that cord around his arm, twisting it and turning it, trying to explain. “Torsion!” “A true knot!” These moments, these lessons, slowly seeped their way into my mind. I knew at a young age that having a full term healthy baby was truly a miracle. Read more Upcoming Events  Join us for these 2015 fundraising and awareness events by participating, contributing or volunteering!  May 2 - Oliver's 5K Run/Walk, New York June 13 - Mary-Alice & Friends 5K for Stillbirth Research and Awareness, North Dakota June 13 - Cael's Ride for Stillbirth, Minnesota June 27 - Healthy Women=Healthy World fundraiser, New York July 20-25 - Ms. International, Florida, featuring Star Legacy Champion Marjorie Vail August 8 - Taylor Morgan Hamilton Foundation 5K for Stillbirth Awareness, Pennsylvania September 26 - Let's Not Be Still! Run & Walk For Pregnancy & Infant Loss Awareness, Minnesota October 10 - Addyson's Angel Run/Walk, Michigan

Nurse's stillbirth story published in Canadian journal  Editor's Note: Jen Chaisson, BScN, a stillbirth mom from Colorado, recently had an article published in the nursing journal Canadian Nurse . Below is her story and a link to her article. I have experienced the death of a baby. My loss occurred on December 5th, 2012 when I was 37 weeks pregnant with twin boys. I arrived at the hospital, in labor, to learn that one of my babies had died unexpectedly – I had an emergency C-section. Dylan (baby A) was born alive (apgars 8 and 9), with the cord wrapped around his neck 3 times and Barrett (baby B) was stillborn, with the cord wrapped around his neck once. The autopsy confirmed that Barrett’s death was due to a cord accident. The sudden nature of my loss has been humbling. I knew, but didn’t really know that one of my babies could die. The emotions I have experienced on this journey have been powerful and life-changing, in fact, I hardly recognize the person I was prior to losing Barrett. The most difficult aspects of my journey have been the feelings of guilt and the lack of acknowledgement from others that one of my babies died. The gifts, that I have had no choice but to accept, include a greater acceptance of myself and others and a deeper appreciation for life. Finding hope and meaning again has been challenging. I have since experienced a subsequent pregnancy resulting in a healthy, living baby. This pregnancy encompassed feelings of indifference, anxiety, sadness and of course relief and joy when my baby was born alive. Although I find it very painful to believe that Barrett’s stillbirth could have been prevented, I am grateful for the research that The Star Legacy Foundation is conducting. Raising awareness and speaking up about stillbirth is an important piece in helping families heal and preventing future stillbirths. My heart goes out to all families who must endure such pain and I am always willing to hear from others who’ve experienced a loss. Please email me with your story.

February 2015

Star Legacy Foundation Newsletter  ★  February 2015

Introducing the Star Legacy Foundation Director of Development Cindy Havel has joined the Star Legacy Foundation team as the Director of Development. Her daughter, Gabriella, was stillborn June 8, 2006, and she is passionate about reducing the possibility of this outcome for future families. Cindy and her husband, Matt, have three living children, pictured below. The five of them have enjoyed volunteering with many organizations over the last eight years in support of pregnancy loss and child development. Cindy also worked on the organizing committee in partnership with the Maple Grove Hospital to begin the Annual Angel of Hope Memorial Walk in 2011. Cindy is a small business owner and she has worked in both independent sales and national sales and marketing roles. Cindy has a degree in International Business and Communication from the University of Minnesota.   “Since we lost Gabriella I knew I was meant to use my heartbreaking experience and understanding in my work. I feel grateful to have met so many people working to make a difference for our babies and for the moving experiences volunteering has given me. I am passionate about my work with Star Legacy and truly look forward to the amazing year we have ahead.”  Stillbirth Matters Blog: Do We Really Need OBs?  by Lindsey Wimmer, MSN, CPNP, CPLC,  Star Legacy Foundation Executive Director  Looking at many of the trends in obstetric care of recent years, it appears that obstetricians aren’t really needed.  The increasingly-popular desire toward home deliveries further supports this point.  There are many rules that tell our OBs exactly what to do, when to do it, and how to do it, so it seems that anyone who can follow directions should be able to perform their duties.  We have turned obstetric care into a recipe.  As long as the ‘chef’ doesn’t stray from the recipe, all will be great.  Right? Clearly, I’m being sarcastic and exaggerating in the process.  But the thought has crossed my mind recently.  I sympathize with the obstetricians who are often caught in a difficult spot between their patients’ desires, their medical opinion, and the rules from hospital, professional organizations or insurance companies. Read more Help Make Us a "GreatNonprofit" If you love our work then tell the world! You have an opportunity to help The Star Legacy Foundation make even more of a difference. Star Legacy has been an award-winner at GreatNonprofits, a charity review site, two years in a row. Help us make it three years in a row by posting a positive review of your experience with us. All reviews will be visible to potential donors and volunteers. It’s easy and only takes a few minutes! Write your review on our page atGreatNonprofits to help us get on the Top-Rated List!  Like Botox in a Box for Star Legacy Foundation  Stillbirth parent and Star Legacy supporter, Amber Goodyear, is giving you 10% off and donating ALL proceeds from her Mary Kay sales to Star Legacy Foundation through Sunday, February 15th! Try Amber’s Best Seller TimeWise Repair® Volu-Firm® Set, it’s like Botox in a box! Just go to www.marykay.com/agoodyear to place your order or call Amber at 952-356-2156. The 10% discount will be applied to your entire purchase and will be reflected in the personal order confirmation you will receive from Amber via email. She is also offering free shipping on all orders. Order by 4:00 p.m. February 10 to receive your products by Valentine’s Day! Continue the giving! If you are in the Twin Cities book a party this week for a future date with Amber and get 40% off for hosting. Your guests will still get 10% off and Amber will continue the giving by donating all proceeds from your party to Star Legacy Foundation! Questions? Contact Amber Goodyear  ambergoodyear@gmail.com or 952-356-2156. Louisiana Doctor Commemorates 25th Anniversary Dedicating Career to Prevention of Umbilical Cord Deaths by Chris Duffy, Star Legacy Foundation Board Member NEW ROADS, LA – Dr. Jason Collins, the nation’s top expert on umbilical cord accidents (UCAs), is commemorating 25 years of dedicating his career to researching and preventing umbilical cord related stillbirths. Dr. Collins, a retired obstetrician, began dedicating his career to UCAs in 1991, after a patient’s fetus had sudden changes in heart rate and decreased movement. He diagnosed a true knot, formed when the baby moves through a loop in the cord. Dr. Collins rushed the mother to the hospital for monitoring, and after the baby’s heart rate dropped significantly, successfully delivered the baby, which was experiencing major distress. This case was the first time in history that a true knot was detected in an ultrasound and later published in a medical journal. Of the approximately 26,000 stillbirths each year in the United States, an estimated 8,000 are caused by umbilical cord accidents. Based on his research, Dr. Collins believes it is possible to reduce the number of UCA stillbirths by half through more diligent monitoring and an enhanced culture of education and open-mindedness in the medical community. “Obstetricians throughout the nation have been taught that umbilical cord-related stillbirths are unpreventable flukes, which is simply not true,” said Dr. Collins. “In my 25 years of research and working with thousands of couples who have lost babies, I have concluded that there are signs that consistently point to umbilical cord problems.” Dr. Collins’ book, Silent Risk: Issues about the Human Umbilical Cord (2nd edition) details the various indications of fetal distress that often point to umbilical cord complications: Decreased movement: Babies who kick less than 10 times within two hours should be evaluated. Monitoring the baby’s movements during the day can reduce risk while the mother is sleeping, as the majority of UCA stillbirths happen between 2 a.m. and 4 a.m. Hiccups: Babies who hiccup several times a day often do so because the mother’s blood flow to the umbilical cord has been compressed. Changes in heart rate patterns: Sudden fetal heart rate changes are often linked to umbilical cord entanglement. Visual tracking: With today’s ultrasound technologies, umbilical cords can be traced from the placenta to the baby. Diligent ultrasound examinations can spot knots, loops, or other umbilical cord problems. Dr. Collins notes one of the inherent issues is the fact that umbilical cord abnormalities are found in approximately 30 percent of successful pregnancies, so it is natural for doctors to view those that result in stillbirths as chance occurrences. His hope is that the medical community will recognize that UCA stillbirths are preventable, and that it will one day become standard procedure for physicians to (1) receive enhanced UCA instruction in school, and (2) educate mothers on how to detect umbilical cord issues. “It’s difficult for one man to move mountains, but that’s what Dr. Collins has attempted to do each day for the last 25 years,” said Lindsey Wimmer, founder and executive director of the Star Legacy Foundation, a national nonprofit dedicated to stillbirth research and education. “On behalf of all parents who have lost babies to umbilical cord accidents, we are infinitely grateful to Dr. Collins for providing a voice for our children who can’t be with us today.” About Dr. Jason Collins Dr. Jason Collins, founder of The Pregnancy Institute and author of Silent Risk: Issues about the Human Umbilical Cord (2nd edition), is the nation’s preeminent expert on umbilical cord accidents. Based on his research, Dr. Collins believes simple cord compressions account for a large portion of stillbirths that many in the medical community accept as unpreventable. Dr. Collins has spent 25 years studying the role played by umbilical cords in stillbirths, and believes it is possible to cut the number of stillbirths in half through the expanded use of fetal heartbeat monitoring. Dr. Collins has demonstrated that real time fetal heartbeat monitoring can spot potential stillbirths before they progress to fetal demise. Dr. Collins’ book is available on Amazon. Follow Dr. Collins on Twitter at @jcollinsmd77. Ongoing Projects and Causes  Participate In Research Are you a physician or midwife interested in promoting healthy behaviors during pregnancy? Please give us your input on how providers communicate with their pregnant patients about topics like exercise and healthy eating.  Learn more and take the survey.  The International Stillbirth Alliance (ISA), together with a large group of other scientists, is researching and writing a series of five papers on stillbirth which will be published in The Lancet next autumn.  Learn more and take the survey.  STAR Stories We invite you to share your story with us to share on our website. Every story is important and in sharing we can hopefully raise awareness and promote research, education & prevention efforts. Visit the STARS Stories page to share your story and photo if you wish using our online form. You can remain anonymous on the website posting if you would like.

January 2015

Star Legacy Foundation Newsletter  ★  January 2015  Upcoming Events  Saturday, January 31 Sew Much Love Sewing and crafting day to make items for stillborn babies and their families. Your donations of fabric and materials is greatly appreciated. Visit the Facebook event page for more details.  Stillbirth Matters Blog: A Blog About Blogs  by Lindsey Wimmer, MSN, CPNP, CPLC,  Star Legacy Foundation Executive Director  I feel the need to speak up for stillbirth families in regard to the multitude of blogs, articles, and beliefs that circulate about us as grieving families and about pregnancy and childbirth in general. The judgmental tone of much of this information makes it clear that these individuals have an agenda. Because of this, I usually try to ignore them or give them the benefit of the doubt. However, recently, I have read and heard several that are incredibly insulting due to the tone and ‘advice’ given to women such as myself. I’m not sure when pregnancy and childbirth care became such a polarizing and political issue, but stillbirth families have a voice that needs to be heard, too. Read more Thank you for the Company Matching Dollars; an easy way to support Star Legacy Foundation Thank you to so very many of you for the financial support you provided to Star Legacy Foundation in 2014. We are expanding our services, research efforts and events this year due to your belief in our mission and all that we can accomplish together! Some of you have started using your employer matching donation plans now that companies have made it easier than ever to support the organizations you care about. Thank you for taking the few minutes to submit the request with your employer. Your contributions are key in helping us work toward reducing the stillbirth risk for future babies. THANK YOU!  Preventing stillbirth? There's an app for that! Dr. Harvey Kliman is a Research Scientist in the Department of Obstetrics and Gynecology and Director of the Reproductive and Placental Research Unit at Yale University. He presented his work on placental volume as it relates to intrauterine growth restriction (IUGR) and stillbirth. He and his team developed ultrasound calculations that can estimate placental volume. This data, along with other research findings about placental health, can help identify babies at risk in the last half of pregnancy.  Dr. Kliman and his colleagues have recently introduced a free iPhone app, EPV Calculator, that providers can use to calculate placental volume! Feel free to share with your OBs!  Learn more about Dr. Kliman and his research.   Grieving my stillborn niece  Editor's Note: the following article by Laura Johnston of Northeast Ohio Media Group was published December 21, 2014 and is used with permission.  She was supposed to be here by now. A chubby little baby, bundled in fleece, the star of our family Christmas. Instead, she's sitting in a tiny urn on my sister's mantel.My sister was 34 weeks pregnant when she and her husband lost their daughter. She was in the doctor's office for a routine visit when they couldn't find her heartbeat. They did an ultrasound, and the baby was gone. A day later, my sister delivered her stillborn girl. Three pounds, 10 ounces, 18 inches long. Ten perfect fingers and darling flipper feet. One cord. The cord was constricted, somehow. Maybe she somersaulted too many times in the same direction. We won't ever know. All we know is that that my niece -- the sister-cousin I had imagined for my daughter, her sharer of American Girl dolls and secrets -- never got a chance. All the stacks of onesies and the new crib, all the kisses from my nephew on my sister's belly. All of those beautiful dreams and plans – dashed. It was days before I Googled "stillborn" and found out that one in every 200 pregnancies ends in a stillbirth. I was shocked. Read more Ongoing Projects and Causes  STAR Stories We invite you to share your story with us to share on our website. Every story is important and in sharing we can hopefully raise awareness and promote research, education & prevention efforts. Visit the STARS Stories page to share your story and photo if you wish using our online form. You can remain anonymous on the website posting if you would like. The Power of 10 To celebrate the progress that has been made by the entire stillbirth community including researchers, parents, obstetrical care providers, advocates and others and to bring to light what still must be done–we are asking everyone to engage the Power of 10! Visit the Power of 10 page for ideas and more! 11 Angels – Supporting Families in the Twin Cities The 11 Angels organization supports families in times of pregnancy and infant loss. Please contact 11 Angels if you know of a family who would appreciate a peer companion on their journey of grief. To volunteer with the organization in any capacity, email 11Angels@11-angels.org. ASAP Coalition Join voices with others who want to bring stillbirth out of the shadows. There are over 800 individuals, organizations, health professionals, parents and publications that are already members of the Action for Stillbirth Awareness & Prevention Coalition. ASAP is dedicated to bringing collective awareness to stillbirth issues and encouraging research and prevention initiatives. Learn more and join today! Support Us Did you know that Star Legacy Foundation is a 501(c)(3) non-profit organization comprised entirely of volunteers? That means 100% of donations go directly to support Star Legacy projects and programs! Give with confidence, Star Legacy Foundation is a 2014GreatNonprofit! We are always appreciative of donations to help us with our endeavors. Support us while you shop online with the iGivebrowser add-on. Star Legacy Foundationinfo@starlegacyfoundation.org 952-715-7731

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December 2014

Star Legacy Foundation Newsletter  ★  December 2014 Stillbirth couple brings See Me, Feel Me to Canada Duncan and Ashley Martin's son Emmett McKenzie Martin was stillborn at 38 weeks, 5 days... two days short of his scheduled C-section date. "I noticed a change in his movements the last time I felt him move at 38 weeks, 3 days, but I wasn't sure, because I wasn't educated on counting the kicks. But he was kicking like crazy. And that is something I have to live with every day. I never went in. I didn't want to be 'that patient'. I didn't know an increase in movement could mean distress. I was so close: how could anything go wrong? I didn't know the importance of taking time each day to really know my baby..." Ashley Martin and her rainbow baby Rowyn, are pictured with her physician/friend Dr. Ilana Streng-Coetzee. Ashley, a registered nurse, went looking for information and found the Star Legacy Foundation's See Me, Feel Me awareness materials. She took copies to her physicians and asked them to consider incorporating the information into their practices and offered to cover the costs of providing the materials. She was thrilled with their enthusiastic response. Ashley returned with a supply sufficient to provide one to each pregnant patient in clinics and prenatal classes in the health region where she lives for an entire year. Next, Ashley will be approaching the health region offices in the area where she delivered little Emmett hoping they will also utilize the materials. This is Ashley's story in her own words: I firmly believe a mom's intuition is her greatest tool in pregnancy... and we must always trust it.  I was never educated to count the kicks - in my nursing education, at my obstetrical appointments in Saskatoon, in prenatal classes. I was asked at my appointments if I was feeling "lots of movement", and at one appointment in particular at 37 weeks, I was told to come in if I was feeling "less movement". But what did that mean? I felt the baby move daily. I didn't know that you could monitor a pattern in their movements. And what about drastically more movement?" In my subsequent "rainbow" pregnancy, I was diligent with kick counting, and went in for NSTs several times to make sure everything was ok. Our daughter was born safe and healthy at 37 weeks, 2 days, after careful monitoring by my new obstetrician.  However, it was still difficult as I was given different directions on how to count kicks by different physicians - one said 10 kicks in 2 hours, another said 6 - there just was no clear instructions and more than that - I wasn't told WHY monitoring my baby's movement was important or that what is 'normal' for one baby isn't necessarily normal for the next baby.  The tool in See Me, Feel Me is something moms can read and keep and follow daily to ensure baby is thriving and it gives clear direction of how to monitor and know YOUR baby. I now know that the numbers aren't what is important - it is learning to know and monitor behaviors and activity for this baby - not compared to a previous baby, your friend's baby, your Mom's babies or even according to a pre-established number of 'kicks'.  Then, when this baby behaves differently we must be empowered to bring it to the attention of our obstetrical provider and insist that the concerns be thoroughly evaluated.  We can't worry about being 'that' patient - this is our baby's life we are talking about. To honor Emmett's memory, it is our hope, that with more education and awareness, we may be able to ensure other babies have a better outcome if they are at all in distress. That moms will know the importance of knowing their baby and reporting changes. That this education can help prevent the heartache that we have faced... We believe every baby is important: not just the ones following a loss.  The See Me, Feel Me pamphlets provide a tool to empower women to trust their instincts! To report changes, to monitor babies' movements after 28 weeks, to just go in if you feel something isn't right! And it provides awareness for some of the lifestyle and other risk factors for stillbirth and awareness of the shocking statistics! It can and does happen to anyone! Contact us at info@starlegacyfoundation.org if you would like a free copy of See Me, Feel Me to share with your healthcare provider or for your own use. Congress Passes The Sudden Unexpected Death Data Enhancement and Awareness Act S. 2746/H.R. 669, legislation that has been in the works for 7 years, passed the House and Senate in the last few months and President Obama is expected to sign it.  Read the final legislation here.  While significantly pared down from the originally introduced bill, as passed this bill endorses the efforts currently in place to investigate SIDS and stillbirth deaths including the collection of data related to these deaths.  In addition, it requires a report to Congress of these activities within 2 years of the signing of the bill.  As you may know, the most recent statistical information regarding stillbirth that is available is from 2006, so we do hope that this bill will encourage publication of annual information since that time. We congratulate all involved in the successful passage of this bill. Stillbirth Matters Blog Umbilical Cord FAQ by Star Legacy Foundation Executive Director Lindsey Wimmer, MSN, CPNP, CPLC Umbilical cord accidents continue to be the number one topic I hear about in emails and phone calls from pregnant or grieving families.  The reasons for this are many.  I do not claim to be an expert on umbilical cord issues, and the topic has been poorly researched.  However, I struggle with the ‘facts’ that are often used without telling the whole truth.  Here is my understanding of the most common questions or comments I hear regarding cord accidents. The Whole Truth It is true that a significant number of babies are born with cords around their necks and the majority of them do not show any signs of distress.  This does NOT mean, however, that cords cannot cause problems!   To tell someone that cords can’t be problematic because they aren’t ALWAYS problematic is misleading. Not EVERY person who smokes tobacco will die of lung cancer.  Does this mean smoking doesn’t cause lung cancer?  Of course not.  Does it mean we don’t need to tell people who smoke of the dangers?  Of course not. If your baby was born with an umbilical cord issue and your baby is happy and healthy, PLEASE count your blessings and consider yourself fortunate to have landed on that side of the statistics.  We are not all so lucky.  Most of all, please don’t say my baby’s cause of death isn’t significant or worth worrying about just because it didn’t happen to your baby. Should I worry about the ‘nuchal’ cord? When we hear about cord issues, most people think about or are talking about nuchal cords.  This is when the umbilical cord is wrapped around the baby’s neck.  That placement alone is not necessarily the problem.  It is a problem if it is wrapped tightly.  However – not for the reason most people think.  A tightly wrapped nuchal cord is not a concern because of the baby’s neck (before birth, the baby does not get oxygen through the trachea into the lungs).  It is a concern because of the compression that is put on the cord itself.  The umbilical cord IS how the baby gets oxygen before birth.       Read More Participate in Research The International Stillbirth Alliance (ISA), together with a large group of other scientists, is researching and writing a series of five papers on stillbirth which will be published in The Lancet next autumn. One of the pieces of background research being done for the papers is a set of three online surveys: for care providers, bereaved parents, and their community members, to assess practices related to stillbirth, and how these can be improved. Learn more and take the survey. Are you a physician or midwife interested in promoting healthy behaviors during pregnancy? Please give us your input on how providers communicate with their pregnant patients about topics like exercise and healthy eating.  If you are a physician (OB/GYN or family medicine) or certified nurse midwife currently providing obstetric care, please click the link below to take a 10-minute survey. Participants will be entered to win a free FitBit activity tracker. This study is being conducted by the Colorado School of Public Health with funding from the March of Dimes. Learn more and take the survey.

New post on Stillbirth Matters

Umbilical Cord FAQ by Shauna By Lindsey Wimmer, MSN, CPNP, CPLC Umbilical cord accidents continue to be the number one topic I hear about in emails and phone calls from pregnant or grieving families.  The reasons for this are many.  I do not claim to be an expert on umbilical cord issues, and the topic has been poorly researched.  However, I struggle with the ‘facts’ that are often used without telling the whole truth.  Here is my understanding of the most common questions or comments I hear regarding cord accidents. The Whole Truth It is true that a significant number of babies are born with cords around their necks and the majority of them do not show any signs of distress.  This does NOT mean, however, that cords cannot cause problems!   To tell someone that cords can’t be problematic because they aren’t ALWAYS problematic is misleading. Not EVERY person who smokes tobacco will die of lung cancer.  Does this mean smoking doesn’t cause lung cancer?  Of course not.  Does it mean we don’t need to tell people who smoke of the dangers?  Of course not. If your baby was born with an umbilical cord issue and your baby is happy and healthy, PLEASE count your blessings and consider yourself fortunate to have landed on that side of the statistics.  We are not all so lucky.  Most of all, please don’t say my baby’s cause of death isn’t significant or worth worrying about just because it didn’t happen to your baby. Should I worry about the ‘nuchal’ cord? When we hear about cord issues, most people think about or are talking about nuchal cords.  This is when the umbilical cord is wrapped around the baby’s neck.  That placement alone is not necessarily the problem.  It is a problem if it is wrapped tightly.  However – not for the reason most people think.  A tightly wrapped nuchal cord is not a concern because of the baby’s neck (before birth, the baby does not get oxygen through the trachea into the lungs).  It is a concern because of the compression that is put on the cord itself.  The umbilical cord IS how the baby gets oxygen before birth.  So – a nuchal cord that is tight enough to restrict blood flow through the cord between the placenta and the baby puts the baby’s oxygen supply at risk.  However – the same is true for any position of the baby and umbilical cord that compresses the cord and reduces blood flow.  This can occur around a limb, around the baby’s body, as a knot in the umbilical cord, with multiple nuchal cords or wraps, as a poor insertion point into the placenta, between the baby’s body and mom’s, and so forth.  Nuchal cords get the most attention, but that is just one type of potential cord issue. My doctor says cord accidents don’t cause problems and then my doctor said my baby was stillborn due to a cord accident. I am the first to admit that the research into umbilical cord issues and how to manage them is lacking.  Much more is needed.  But the problem is compounded by the medical community not even being able to agree if this is a legitimate cause of death.  The part that is most frustrating to me is that many providers use both of the above statements when it fits the situation. According to the Stillbirth Collaborative Research Network (SCRN) studies, 11% of all stillbirths were determined to be caused by umbilical cord issues.  By their own description, this is probably a low number because they had very strict conditions for coming to this conclusion and required definitive pathologic evidence of such. It can be extremely distressful and frustrating to parents to hear during the pregnancy that umbilical cords don’t cause problems and then after the pregnancy that the cause of their baby’s death was an umbilical cord accident.  We can’t have it both ways.   This gives the appearance that providers either don’t know about the issue or they are taking the “easy” way out.  (Meaning it’s easier to reassure parents and play the odds during the pregnancy.)  It’s also easier after a stillbirth to provide an “answer” that is easy for families to understand and accept.  The belief that “nothing can be done about umbilical cord issues” doesn’t help because it allows providers to use the line that “these things just happen”. If cord accidents DO happen, then why are we told they don’t?   If they DON’T happen, then why are we told they do? Why should I say anything about a cord issue? Many families find out accidentally or after the fact that their baby had an umbilical cord issue.  Most providers I talk to tell me that they will not tell families about the issue.  If they do tell them or the family finds out, the provider will minimize their level of concern.  Why? Most providers say they ‘reassure’ their patients that cords don’t cause problems because they don’t want the mothers to worry and they can’t do anything about it anyway. First – your job is not to keep me thinking that everything in pregnancy is bubblegum and unicorns.  Your job is to assess me and my baby and provide your professional recommendations about how to protect us both from harm. Second – why aren’t you the ones asking for studies to be done that would help you have treatment options??  Our medical community should be leading the charge in demanding we learn more.  The advancements we have made in the last few decades in almost every area of medicine are incredible.  Why isn’t stillbirth (and cord accidents in particular) one of them?  The lacks of research and treatment options directly affect you, your patients, and how you practice. Third - If you don’t know what to do about a condition or don’t feel like there are good options, tell us that!  We have the right to know what is going on with our bodies and our babies.  Let us be a part of that conversation.  Other areas of medicine don’t get away with this. Cords don’t get tight with labor or cause the baby to be in distress Umbilical cords can become taught during labor depending on many forces including the length and position of the umbilical cord and the position of the baby.  All the ways a cord can be compressed or compromised during the pregnancy can happen during delivery as well.  Any change in physiologic status can cause fetal distress – including hypoxia secondary to cord compression.  Not every baby who experiences distress during labor has a cord issue, but many do.  There are other causes of distress as well, but that does not mean cords aren’t one of them. I personally had the experience of watching my baby demonstrate this effect.  While on a fetal heart monitor and having an ultrasound completed, we were able to see my baby’s position compress the umbilical cord.  Within about 8-10 seconds, my baby’s heart rate started to decelerate.  When she moved and the cord compression was relieved, her heart rate returned to normal.  Once her heart rate began to decelerate and she was not able to relieve the compression enough for her to recover, she was immediately delivered.  Because of this experience, I believe 100% that cord compression can be a cause of fetal distress. Cesarean section is the only cure for a nuchal cord. A newer question I have been asked is if a C-section is required to save a baby when a nuchal cord is identified.  I’m going to discuss this in terms of all cord issues (not just nuchal for the reasons mentioned above).   A C-section does not necessarily prevent cord issues, and it is certainly not the only way to reduce or manage cord complications.  There are situations where a provider feels this gives the mom and baby the best chance of positive outcomes. I am in support of any decision made with the family for those reasons.   I also believe vaginal deliveries are possible when cord issues are present.  In this case, knowledge about the issue, close fetal monitoring, and access to emergency care can help provide reassurance and warning about emerging symptoms. There are many, many complex factors that must be evaluated when making the decision to have any surgical procedure.  I am not a fan of surgery whenever possible, but I also firmly believe that surgery is not the worst thing that can happen to someone.  This is simply another treatment modality that can be evaluated and considered.  Sometimes we must choose the lesser of evils. Umbilical cord accidents don’t happen very often. This is a statement made only by one who has never been affected. And I would like to know what your definition is of the word “often”. Stillbirth in general occurs 26,000 times every year in the United States.  If we use the SCRN numbers of 11% of stillbirths being caused by umbilical cord accidents, that would indicate that 2,860 babies will be stillborn this year due to umbilical cord accidents.  That is more than the number of SIDS deaths per year.  That is significant. And these are the prenatal deaths.  What about the babies with umbilical cord accidents that only survive minutes or days?   What about the babies who develop cerebral palsy or other conditions as a result of the hypoxia suffered during an umbilical cord accident? Which leads me back to where we began – we need more research to understand, manage, and prevent this cause of poor pregnancy outcomes.

November 2014

New post on Stillbirth Matters

What is IUGR? by Shauna by Lindsey Wimmer, RN, MSN, CPNP, CPLC Intrauterine Growth Restriction (IUGR) is receiving a lot of attention recently as it relates to perinatal loss. I am very encouraged by this and the promising studies that are being done.  A recent video has been circulating through social media that highlights the issue. I've been getting many questions from parents about what IUGR actually IS.  I think it's a very important question. The most important thing we need to understand about IUGR is that is it a symptom, not a diagnosis.   Providers will often provide this as a diagnosis if there is a poor outcome in a pregnancy or even identify it as a cause of death.  Being small does not, in itself, post a lethal problem.  But WHY a baby is small very well could be a serious problem. Studies have indicated that more than half of all stillborn babies are growth restricted. This tells me that these babies had issues going on through the pregnancy that were limiting the baby's ability to develop and grow appropriately - and, ultimately to survive. Growth restriction, by definition, requires us to recognize that a baby's growth pattern is not following expected norms.  In pediatrics, we do this with every single well-child visit from birth to adulthood.  If a child is at the 75th percentile for his/her age and is consistently at that mark, we consider that appropriate growth.  However, if a child is usually at the 75th percentile and is suddenly down to the 25th percentile - we are going to be investigating because that is a significant change.  Growth charts can be utilized for fetal growth in the same way - and usually are when IUGR is suspected and identified during a pregnancy.  The problem is when a diaghnosis of IUGR is made from a single assessment.  From a single point in time, it is not feasible to identify if a baby measuring at the 25th percentile is acceptable or not.  It depends on what the baby has done in the past, but we often don't have that information. Most providers and facilities have identified trigger points at the 10th percentile or 5th percentile.  If a baby is under those marks, they may be diagnosed with IUGR.  This can be problematic because it may mean that we are concerned about a baby that is naturally a smaller person OR it may be that we don't catch a baby that is very sick until it progresses to this extreme.  It is more appropriate to consider a baby "appropriate for gestational age" (AGA), "small for gestational age" (SGA) or "large for gestational age" (LGA) rather than IUGR if we are only looking at data from one assessment  These terms simply describe the child's size without indicating if it is a concern or not.  However, it is important to remember that any of these babies could ALSO be growth restricted - but we need more information to know.  Once a baby is born, if we identify growth restriction (known as 'failure to thrive' in the pediatric setting), we will begin looking into potential causes.  We look at the sources of the baby's nutrition, the baby's anatomy and physical health, the baby's behaviors and patterns, the baby's environment, and more.  The baby's size is considered a symptom - not a final diagnosis.  We may not be able to directly affect the baby's growth, but we can address the underlying cause (in most cases) and indirectly improve growth.  The growth pattern is simply another vital sign that indicates how well the baby is doing. This isn't always the approach to baby's growth (or restricted growth) in obstetrics.  Any baby diagnosed with IUGR should be having serial ultrasound measurements and further testing to identify the cause of the limited growth and the baby's tolerance of the issues.  Examples could include placental concerns, restricted blood flow through the umbilical cord, infection, or genetic or anatomical abnormalities. This information gives the obstetrical providers information about how to manage the pregnancy moving forward. Probably my biggest frustration with IUGR is that in 'healthy' pregnancies, it is only looked for by measuring fundal height (the tape measure of mom's 'bump'). This method has been noted in literature to be faulty and neither sensitive or specific.  But it continues to be the standard of care because it is easy and inexpensive.  I am very concerned, however, that this practice keeps us from identifying babies that are struggling under our radar and we lost a chance to intervene and help them survive and thrive. The technology exists for ultrasound measurements to be taken regularly throughout the pregnancy to better assess baby's growth. Many stillbirth families are told that their baby died of IUGR, yet they did not have any idea this was a concern before the baby had died.  Further, they aren't given any information about WHY their baby had IUGR.  These are significant omissions that could have implications for parental grief, management of and health of subsequent pregnancies, or for public health stillbirth prevention efforts. Shauna | November 10, 2014 at 4:02 pm

October 2014

Star Legacy Foundation Newsletter  ★  October 2014 Thanks for another great run/walk awareness event! Thank you to everyone who made the 2nd annual Let's Not Be Still! Pregnancy & Infant Loss Awareness Run/Walk in Eden Prairie, Minnesota, on October 4 a huge success! More than 700 people braved the cold and wind to support the awareness, research, education and prevention efforts of the Star Legacy Foundation and remember our precious babies. Save the date for next year's event: October 3, 2015! View photos from the event on our Facebook page. Check out the other runs in October, which is Pregnancy and Infant Loss Awareness Month. See calendar to right. Commemorate Pregnancy and Infant Loss Awareness Month with the Power of 10 Ten years ago, on July 31, 2004, Garrett Jamison Wimmer was born still to Lindsey & Trent Wimmer at 38 weeks after a "textbook" pregnancy.  Lindsey, a pediatric nurse practitioner, was especially mindful of the importance of following instructions to ensure a healthy pregnancy. What she didn’t realize was that stillbirth was even a possibility – in spite of seven years of nursing education.  The frustration that resulted from “Why didn’t I know?” and “Why is this still happening?” led to the creation of the Star Legacy Foundation. At that time there was little research or information about stillbirth.  Even the ACOG’s (American College of Obstetrics and Gynecology) website didn’t contain the word “stillbirth”.  Ten years later we know that progress has been made even though the numbers of babies stillborn in the United States don’t yet reflect that progress. But–more importantly–we have a long, long way to go. The efforts needed still align with the mission and goals of the Star Legacy Foundation: awareness, research, education and prevention of stillbirth. The Power of 10 To celebrate the progress that has been made by the entire stillbirth community including researchers, parents, obstetrical care providers, advocates and others and to bring to light what still must be done–we are asking everyone to engage the Power of 10! Take a look at the list below (or add your own ideas) – find things that appeals to you and carry out the mission of THE POWER OF 10! Be sure to take a picture and send us your story of how you engaged the POWER OF 10 to info@starlegacyfoundation.  Awareness & Support  Ask 10 people to make a donation to the Star Legacy Foundation to support our efforts. Share 10 facts about stillbirth on your facebook page, twitter or other social media. Deliver 10 cupcakes (or more) to a local Labor & Delivery Unit or a NICU in memory of all babies gone too soon. Ask 10 people to write letters to their legislator to support the Amendments to the FMLA law so that grieving parents will have the same the provisions of this bill after the loss of a child. Form a team and recruit 10 people to join your team for any of the “Let’s Not Be Still Run/Walk” events.  You can even participate virtually if you aren’t near any of these events. Send 10 blankets, outfits, caps, etc. to Star Legacy Foundation or your local hospitals to be distributed to stillbirth families. Donate 10 Teddy Bears to hospitals or the Star Legacy Foundation to be given to stillbirth families so they need not go home with empty arms. Walk, run or bike 10 miles while wearing the Let’s Not Be Still t-shirt or another shirt that will raise awareness about stillbirth issues. Send a letter to local media (newspapers, radio, tv, magazines) containing 10 stillbirth facts. Invite 10 people to join the Action for Stillbirth Awareness & Prevention Coalition (ASAP Coalition) Send a note to 10 stillbirth families just to say you’re thinking of them. Comment on 10 baby loss memorials/websites expressing your support and sympathy. Do 10 good things for yourself in memory of your child. Buy a cup of coffee for 10 strangers in memory of your child with stillbirth information attached. Research Ask 10 recent stillbirth Moms or currently pregnant women to participate in the STARS Study. Ask 10 loss Moms to participate in (Jessica Killeen’s) study. Ask 10 moms to participate in (Jen Huberty’s) study. Ask 10 moms who encountered the 39 week rule for elective delivery to send us their story to info@starlegacyfoundation.org Donate to Star Legacy Foundation’s research fund in increments of $10. Education Provide See Me, Feel Me materials to 10 pregnant women. Provide See Me, Feel Me materials to 10 obstetrical providers and/or hospital L&D units. Invite 10 people to view the movie Return to Zero with you. Host a speaker for 10 (or more) local health professionals on a stillbirth topic. Distribute 10 Prevent Stillbirth silicone bracelets to your local L&D Unit. Invite 10 health professionals to view the videos of the Stillbirth Summit 2014 presentations.  Buy 10 books for a Labor & Delivery Units to distribute to stillbirth families. Talk to 10 people (family, friends, co-workers, strangers) about your child and how stillbirth has affected your life. Thank you for helping us recognize the 10th Anniversary of the Star Legacy Foundation by engaging the Power of 10! Upcoming Events October is Pregnancy and Infant Loss Awareness Month. The following events raise funds for Star Legacy Foundation: October 11 2nd Annual Addyson's Angel  Run/Walk, Jenison, Michigan October 23 5th Annual Abby's Run,Barrington, Illinois October 25 5th Annual Abby's Run,West Allis, Wisconsin Share your story as part of STARS Stories The Star Legacy Foundation recently conducted a survey of mothers (with and without a history of late stillbirth) to identify trends and associated risks for stillbirth. TheSTARS Study results are now being analyzed by our research team and will be published soon. Although the study has ended, we invite you to share your story with us to share on our website. Every story is important and in sharing we can hopefully raise awareness and promote research, education & prevention efforts.  Visit the STARS Storiespage to share your story and photo if you wish using our online form. You can remain anonymous on the website posting if you would like.

September  2014

Star Legacy Foundation Newsletter  ★  September 2014

Let's Not Be Still! Pregnancy & Infant Loss Run/Walk

Join us Saturday, October 4, in Eden Prairie, Minnesota, for the 2nd Annual “Let’s Not Be Still!” Run/Walk for Pregnancy & Infant Loss Awareness to remember and honor babies lost too soon. Each life is precious to those who love and cherish their memory. We are a community of parents, families, friends and healthcare providers who want desperately to see the staggering numbers of these tragic losses reduced. Take your support one stop further by creating a fundraising team and encouraging your friends and family to sponsor your participation. Top fundraisers will win prizes.  Don’t forget to honor the memory of a child by adding his/her name to memorial balloons. New for this year are a 10K race, dry fit race t-shirts, face painting, crazy hair, rock painting, memorial balloon release, team photographs and more! Can’t make it to the race but still want to help? Register in the Virtual Walk category to support the Star Legacy Foundation even if you can’t attend. An official race t-shirt will be mailed to you. Check out the other runs going on in October for Pregnancy and Infant Loss Awareness Month, see calendar to right.

Stillbirth Matters Blog

Stillbirth--A Description, Not a Diagnosis by Star Legacy Foundation Executive Director Lindsey Wimmer This spring, Star Legacy Foundation held our first essay contest! Potential entrants were encouraged to send in an essay explaining what they would like researchers and health care providers to know about their stillbirth experience and what they have learned in their grief. Jackie Sondrol submitted the winning entry. Her essay was printed in the syllabus for Stillbirth Summit 2014 in June and we are pleased to share it with you again here. Her words speak to many of us. Thank you to everyone who participated. We hope to share the other entries in future issues. We wish Jackie hadn’t joined our ‘club’ just as we wish none of us had. But, we are certainly grateful to have Jackie’s passion, dedication, and inspiration working with us to prevent stillbirth. Stillbirth – a description, not a diagnosis. It is only after influential organizations reach this simple conclusion that we will move forward in research and eliminate this word from 26,000 families’ mouths annually. I’ve had many thoughts over the past seven months since my son, Aiden, was born silently into this world but the one thought that keeps circling back is; Why? Why didn’t I know this was a possible outcome in pregnancy? Why didn’t I have the same level of care as an acquaintance of mine that was considered high risk only because she was over the age of 35? Why didn’t I have more testing as part of my routine care to monitor my baby’s well-being? Why does a mother have to experience a loss in order to receive better care? All of these questions hold a lot of weight but combined they have the power to change a course of treatment or care but it shouldn’t have to come to this. It’s time providers take accountability for their level of care and work towards preventing/managing risks associated with stillbirth. I’ve thought about the risk factors associated with stillbirth a dozen times. I didn’t have any; except now that my baby has been stillborn, I have one risk factor that makes me at risk for a stillbirth and not just 3% like I was before but according to one study; an increased risk up to ten fold. Why then, if every expectant mother has the same risk of having a stillborn, wouldn’t every expectant patient be considered high risk? If we do, in fact, have no indicators that a baby is at risk for stillbirth, then why isn’t a higher level of care given to the fragile condition of the baby in the womb and the expectant mother? I believe; they are looking in the wrong place. The risk factors give providers a guideline to determine if certain women may be at a higher risk than others but, it seems that more often than not, the baby is the one that needs to have their own set of ‘guidelines’ to be monitored as well. How do we prevent/manage something if we aren’t even taking the time to look for it? It all begins with education and awareness. In the weeks following the death of my son; my nurse told me, “These things usually don’t happen and especially not in the third trimester.” It was then that I knew education was lacking even in the medical field. This realization was the start of my own awareness efforts. I started Aiden’s Wings of Awareness to bring forth awareness regarding pregnancy and infant loss and to educate others about how often it occurs, needlessly, in the United States each and every day. If even one life can be saved, it is worth every minute.  I challenge you to be your own advocate. “Every life, no matter how fragile or brief, forever changes the world.”

Upcoming Events

The following events raise funds for Star Legacy Foundation: September 27 5th Annual Abby's Run, Oulu, Wisconsin October 4 2nd Annual Let’s Not Be Still! Pregnancy & Infant Loss Awareness Run/Walk, Eden Prairie, Minnesota Let’s Not Be Still! 5K/Walk, Salem, Ohio. In memory of Wylin Alex Thomas Strickland. October 11 2nd Annual Addyson's Angel Run/Walk, Jenison, Michigan  October 23 5th Annual Abby's Run, Barrington, Illinois October 25 5th Annual Abby's Run, West Allis, Wisconsin

Recommended Reading

Silent Risk by Jason Collins, MD, MSCR, has been available for a while; however, the second edition of this book has now become available in print and digital formats from Amazon.  This book describes the earliest obstetrical writings going back to ancient times. It notes that the umbilical cord is the lifeline for the unborn, and when it fails, the infant is destined to perish. Included in the second edition is over 120 pages of recommended reading and references. Technical explanations provided are sufficient for the scientist, yet written so that even the lay reader can understand. The book notes a statement by the Stillbirth Collaborative Research Network Writing that "Umbilical cord abnormalities accounted for 10% of our possible or probable causes of death, which is considerably higher than in previous studies, and were more common in stillbirths of greater than 32 weeks gestation. As a potentially preventable cause of stillbirth, cord abnormalities deserve further investigation." (JAMA Dec 14, 2011). Included are prenatal evaluation and monitoring recommendations to identify and manage umbilical cord concerns. This book is a 'must read' for every obstetrical provider and family who has experienced stillbirth or birth injury due to presumed umbilical cord issues. Priced at $19.99 ($3.99 in Kindle format) at Amazon.com it is an astounding value for the insight it brings to the issues. Every family told that their child died due to an umbilical cord "accident" or condition should see that their obstetrical provider has a copy.

                                                                                                                                                                       

Ongoing Projects

STARS Study – Ending soon! Star Legacy Foundation is conducting a survey of mothers (with and without a history of late stillbirth) to identify trends and associated risks for stillbirth. Please help spread the word! Mothers who are currently at least 28 weeks pregnant or have delivered a baby (live or stillborn) in the last three weeks are encouraged to participate. Learn more and take the survey 11 Angels – Supporting Families in the Twin Cities The 11 Angels organization supports families in times of pregnancy and infant loss. Please contact 11 Angels if you know of a family who would appreciate a peer companion on their journey of grief. To volunteer with the organization in any capacity, email 11Angels@11-angels.org ASAP Coalition – Join Today! Join voices with others who want to bring stillbirth out of the shadows. There are over 800 individuals, organizations, health professionals, parents and publications that are already members of the Action for Stillbirth Awareness & Prevention Coalition. ASAP is dedicated to bringing collective awareness to stillbirth issues and encouraging research and prevention initiatives. Learn more and join today!

July  2014

Summit Recap

Wow! The Stillbirth Summit 2014 was almost a month ago – but we’re still so moved by everything that happened! For those of you who joined us – THANK YOU for your contributions and support. We hope you are as motivated as we are and encouraged by the work that is being done. For those of you who weren’t able to be there, stayed tuned as we address more about the topics and move forward. Some of the topics included fetal movement, communication with providers and families, sleep and sleep position, fetal surgery, infection, placental function, data collection, the 39 week rule, and MORE! The presentations will be available soon to view online at www.starlegacyfoundation.org. We hope you’ll watch the work of these amazing researchers and share them with others. - Lindsey Wimmer, Executive Director                  Action Items and Ways to Help Researchers If you or others you know had a pregnancy that was impacted by the recent movement limiting induction of labor before 39 weeks (regardless of outcome), please send us your story. Help us gather 39-week rule data from the health department of every state. We currently need information from: AL, AR, CT, DE, GA, HI, ID, IN, IA, KY, LA, ME, MD, MA, MS, MO, MT, NV,NH, NJ, NM, NC, OK, OR, PA, RI, SC, TN, UT, VT, WV. If you live in one of these states and would like to help, send a note to info@starlegacyfoundation.org for details. If you are a loss mom, please participate in a research study on the impact of pregnancy loss and stillbirth on the relationships and emotional well being of parents. Participate in another study of moms who have had a stillbirth in the last year at 20 gestational weeks or more. This study explores social media and physical activity participation and will be used todesign interventions for women who have experienced perinatal loss. Join the ASAP Coalition - our opportunity to unify and magnify our voices for awareness & prevention. If you are or know anyone who very recently (in the last 3 weeks) delivered a stillborn baby at 28 or more weeks or if you are currently 28 or more weeks pregnant or delivered a living baby in the last 3 weeks, please consider participating in the STARS Study.  Provide information to hospitals, clinics, obstetrical care providers, childbirth educators, and families about fetal movement awareness. We'll send them the materials - just contact us at info@starlegacyfoundation.org Where Are The Health Professionals??? by Lindsey J. Wimmer, RN, MSN, CPNP, Executive Director, Star Legacy Foundation My mind is still spinning from the incredible presentations and discussions at Stillbirth Summit 2014! There were a few ‘themes’ that emerged from the dialogue. Some were just questions that were asked more than once. One of those questions was Where are the Health Professionals???I, too, was discouraged by the number of health professionals in attendance. To those that DID come - THANK YOU from the bottom of my hert. For taking the time, committing to your littlest patients and their families, and engaging in discussions that hope to make a difference. Your presence does so much good for the hearts of grieving families. I know that providers are often concerned that patient-driven events are “sob fests” where they will hear one person’s tragic story after another. I believe there is much to be learned from events with that type of program. However – that isn’t what this conference is! A quick glance at the esteemed panel of presenters will prove that some of the stillbirth world’s brightest, most passionate, and most current researchers from around the world were here to work together and with all of us. I was so happy to hear from almost every health professional in attendance comment how this was worth every minute of their time. Interestingly, they also asked the question about other health professionals .  “Where are our colleagues?” The STARS Study Study of Trends and Associated Risks for Stillbirth IRB# HUM63655 The Star Legacy Foundation is conducting a survey of mothers (with and without a history of late stillbirth) to identify trends and associated risks for stillbirth.  If you are a stillbirth mother, we are so very sorry for your loss, but very grateful that you wish to help. While we acknowledge the pain of stillbirth at  any gestation, this study will focus on late stillbirth of 28 weeks or more gestation. If you are a mother of a child born alive, we congratulate you on the addition to your family and are very grateful to you for taking the time to provide very valuable information to help us understand stillbirth.  For the results of this current study to be relevant, we need a large number of women to participate who are: 1.     mothers of babies stillborn at or after 28 weeks, 2.     mothers of newborn babies 3 weeks old or younger, 3.     mothers currently at least 28 weeks pregnant. We encourage you to please pass this information along to other mothers that might be willing to participate.  The survey takes approximately 30 minutes to complete. You can complete the survey here: http://starlegacyfoundation.org/stars1/