Let’s Not Be Still

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Organization sheds light on stillbirth awareness

The Star Legacy Foundation is a 501(c)(3) nonprofit organization dedicated to reducing pregnancy loss and neonatal death and improving care for families who experience such tragedies. Chances are you know someone who has had a miscarriage or stillbirth, because one in four pregnancies end in loss.

A stillbirth is defined as the death of a baby in utero after 20 weeks gestation. It claims 10 times as many lives as SIDS (Sudden Infant Death Syndrome) and yet does not get the same attention. There continues to remain a stigma around pregnancy loss that leaves families isolated in their grief, and their children often forgotten. Today’s stillbirth statistics in the United States are equivalent to a school bus full of children dying, that is 71 innocent children dying every single day, 26,000 babies a year.

The Star Legacy Foundation is made up of a community of families, health professionals, researchers, policy makers and individuals trying to increase awareness and educate the medical community and the public about stillbirths, raise funds for research, and encourage advocacy as well as provide family support through some of the programs offered such as hospital outreach and peer companion programs.

The Star Legacy Foundation was originally started in Minnesota by a nurse and her family whose son was born still at 40 weeks. The New York Metro chapter was started in July of 2015 by a family who also lost a son at 34 weeks. There are currently 22 local chapters across the United States and six more in development stages, all run primarily by volunteers that have had a stillbirth. I, myself, lost my daughter Emma-Méabh on April 21, 2017, at 29 weeks. Since our loss, my husband and I have been working closely with the Star Legacy Foundation in hopes of helping other families like us.

In addition to all of the programs, the organization has also been working on new legislation. A few states already offer a one-time tax credit to provide some assistance towards the extreme costs of losing a baby, but New York does not. Recently, Senator Shelley Mayer introduced the bill in the Senate and Assemblyman Buchwald will be introducing their version soon. The Star Legacy Foundation is also working on making changes to the Family Leave Act to include stillbirths for both parents.

On May 4, the Let’s Not Be Still Annual Festival 5K and Walk will take place at North Hempstead Beach Park, at 175 W. Shore Rd., in Port Washington. Registration begins at 8:30 a.m. Adults $40, youth (4-12) $20, 3 and under are free. The event is hosted by the Star Legacy Foundation NY Metro Chapter.

For more information about The Star Legacy Foundation, visit www.starlegacyfoundation.org.

—Submitted by Maggie Goodwin

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