Newly formed NY Metro Chapter of the Star Legacy Foundation seeks prevention, research funding
Imagine you are pregnant. After a long but happy nine months, you arrive at the hospital only to be blindsided by the most devastating news possible: your perfectly healthy baby has died, and no one can tell you why. Then imagine that the next words out of the doctor’s mouth are that you’ll have to labor for several hours, only to deliver your beloved child’s dead body. And then you’ll leave the hospital alone, an empty child safety seat still strapped in the back of your car. And you’ll somehow begin the monumental task of picking up the pieces of your shattered life.
The horrific nightmare outlined above has a name: stillbirth. And believe it or not, it’s happened to an untold number of families in our local communities. The newly formed NY Metro Chapter of the Star Legacy Foundation is seeking to change this.
Each year, there are 2.6 million babies stillborn around the world, approximately 26,000 of those in the United States. It is 10 times more prevalent than Sudden Infant Death Syndrome (SIDS), and if included in causes of death, would rank 11th in the United States. However, as noted by prominent medical journals, stillbirth has not received attention relative to the scope of the problem.
Public health experts have called stillbirth “one of the last taboos” and “one of the most shamefully neglected areas of public health.” Indeed, thousands of stillbirth families will report feeling that the death of their baby before birth was considered “not to count.” The lack of funding, interest, and urgency in investigating and preventing these deaths — and the all too often inadequate support given by health professionals and society to families who experience a stillbirth — reflect these truths.
Affecting 1 in every 160 deliveries, according to the American College of Obstetricians and Gynecologists, stillbirth is one of the most common adverse pregnancy outcomes. Yet, it remains one of the most understudied and underfunded public health issues, even though, for example, there are twice as many stillbirths worldwide as deaths due to HIV/AIDS.
The worst part is that so many of these tragedies are potentially avoidable.
Approximately half of all stillbirths occur during the third trimester (after 28 weeks gestation), when interventions are more practical. Shockingly, one sixth of all stillbirths occur after the baby has reached term gestation. And heartbreakingly, a cause of death is never identified for as many as 70 percent of all fetal deaths.
Clearly, something needs to change. But change will never happen without increased funding for research and more open discussion about this tragic topic. The Eden Prairie, Minnesota-based Star Legacy Foundation is a 501(c)(3) non-profit organization dedicated to stillbirth research and education, and is on a mission to increase awareness, support research, promote education, and encourage advocacy and family support regarding stillbirth.
With no local organization driving progress on stillbirth in the heavily populated New York metropolitan area, it was imperative for the NY Metro Chapter of Star Legacy to form.
We are a passionate group of parents, families, and friends of stillborn babies who strive to save other families from the heartache we have suffered. We believe that through discussions with medical providers and expectant families, we can show others that we can do more to prevent such a needless tragedy. Along with the rest of the Star Legacy Foundation, our chapter has great hope for the future to prevent many stillbirths in the United States and around the world. Through our grassroots efforts, we can provide the education and partnership necessary to empower families and health professionals to identify and protect vulnerable babies.
We invite you to join us in our mission to save the lives of babies in our community and beyond. Register for our family-friendly 5K run/walk on April 17th in Port Washingtonm, NY and/or April 30th in South Salem (www.letsnotbestill5k.org) and learn more at www.starlegacyfoundation.org/new-york-metro-chapter/
Hilary Hughes is chair of the NY Metro Chapter of the Star Legacy Foundation.