Passing this act in Congress can help end stillbirths like my son’s
On Oct. 3, 2015, the unimaginable happened. My husband, Joshua, and I found ourselves faced with every expectant parent’s worst nightmare when our son Owen Nathaniel was stillborn at 31 weeks.
He was beautiful and perfectly formed weighing 4 pounds 2 ounces and was already showing signs that he would be tall (like his dad) at 18.5 inches. Owen was delivered by crash C-section two months too soon when I noticed a change in his movement, but sadly, we were too late.
I never knew that I was at risk or that something this horrific could happen to our family, yet it did. And our life has never been the same since.
Stillbirths are defined as the death of a baby in utero, any time from the 20th week of pregnancy onward. Every year in the United States approximately 23,000 babies are dying in their mother’s womb. That is 1 in 170 pregnancies that end with the catastrophic, life-altering outcome of stillbirth.
To help put this in perspective, the annual number of stillbirths far exceeds the number of deaths among children aged 0-14 years from preterm birth, SIDS, accidents, drownings, guns, fire, and flu combined. And yet, despite all these shocking figures, stillbirth remains a tragically neglected public health crisis.
We aren’t talking about the realities of this risk for every pregnancy, and we should be so that every expectant parent has a fighting chance to prevent it.
After our son died following his “textbook” perfect pregnancy, our providers were just as shocked as we were. They were quick to want to brush off Owen’s death claiming that “sometimes healthy babies just die.” Our doctors did nothing to help us figure out why our son had died.
While 50% of stillbirths causes remain unknown, it’s not because they couldn’t find a reason via autopsy, but because not all pathologists are trained to conduct these evaluations. Lack of access to a perinatal pathologist results in either no autopsy, or one that results in incorrect information.
What is often overlooked is how important it is to understand why a baby has died for the health and well-being of not only the mother, but for subsequent pregnancies, so that we can understand how best to prevent future losses. We must have accurate and timely data to help understand the underlying causes of stillbirth and identify strategies for prevention. Without it, tens of thousands of babies will continue to die every year in this country.
The Stillbirth Health Improvement and Education (SHINE) for Autumn Act, was introduced by Sens. Cory Booker (D-NJ) and Marco Rubio (R-FL) and aims to lower the staggering rate of stillbirth by taking critical steps to invest in research and data collection required to better understand stillbirth so that we can begin to identify strategies for prevention. Companion legislation passed in the House of Representatives with overwhelming support (408-18) in December 2021.
In 2020, our great state of North Carolina had the 22nd highest stillbirth rate in the nation. That year, 680 families walked out of the hospital without their baby. You can learn more about the SHINE for Autumn Act at shineforautumnact.org.
Along with the thousands of other stillbirth families in North Carolina, Joshua and I sincerely hope that Sens. Richard Burr and Thom Tillis will help us to ensure a safe passage of the SHINE for Autumn Act in this Congress. I call on Congress to join us in our efforts to bring stillbirth out of the shadows and pass the SHINE for Autumn Act before the end of the 117th Congress.