It was Thursday, Aug. 20, 2015, and I had just been admitted to the hospital at 37 weeks pregnant to deliver my second child. My healthy 2-year-old was waiting at home. She had been born right at 40 weeks after a totally normal pregnancy.
By all outward appearances, my son’s pregnancy had been normal as well. No concerns were raised at any of my regular appointments or ultrasounds. But I’d gone to my doctor’s office earlier that morning because he hadn’t been moving as much the previous few days, and by that morning, he had stopped moving all together.
My nightmare began when my doctor looked at the ultrasound and said she couldn’t find a heartbeat. Unable to process this statement, I asked her what she meant. She ever so gently replied, while still staring at the screen, “I’m afraid it means the baby has died.”
At the hospital later that evening, I was induced, and early the next morning, on August 21, Luke Wyatt Moxley was born. He had all his fingers and all his toes, a normally formed brain and organs, and was appropriately proportioned and totally perfect in every way, except that he was completely silent, lifeless, his eyes clamped shut – we will never know what color they were. We held him for a while, and then we said goodbye, for the first and last time.
What I would come to learn about my experience in the days and weeks to come was shocking. Before it happened to me, I thought stillbirth was something that happened in the 1800s. I thought that once you made it past the first 12 weeks of pregnancy, you could share your happy news with the world and were as good as gold, virtually guaranteed to bring a live baby into the world as long as you didn’t smoke or drink or or do anything otherwise reckless.
What I learned is that stillbirth is actually shockingly common - that 23,000 babies are stillborn in the U.S. every year, one of the worst rates among developed nations. I learned that this is the equivalent of 1 of every 160 pregnancies, and 6 times the rate of loss to sudden unexpected infant death syndrome, a far more well known danger to infants’ health. I learned that this rate has remained virtually unchanged over the last 50 years, and that almost half of all stillbirths occur at or near full term and often seem to be otherwise healthy babies. I learned that nearly 2/3 of all stillbirth deaths remain unexplained. And I learned that pregnancy loss is one of the most understudied areas of medicine, even though it affects many many thousands of women, children, and families in our country.
Stillbirth and perinatal loss clearly have a huge impact on women’s health, and on mental health in particular, as depression, anxiety, and trauma commonly accompany grief over the unexpected loss of a baby. And yet pregnancy loss, and late-term pregnancy loss in particular, is conspicuously absent from our national conversation. We remain too afraid to acknowledge that babies can die in the second and third trimesters, and to empower women with the information that would help them to reduce their risks. The result is a crippling stigma that silences conversation about risks, stifles and alienates families who do experience a loss, and can hinder their mental health recovery.
Star Legacy Foundation is working to change all of this. Founded in 2009 by a nurse whose son was stillborn at term, Star Legacy is the leading national nonprofit devoted to stillbirth awareness, research, prevention, and support. In early 2018, I joined with other volunteers to found the Maryland chapter of Star Legacy. We are dedicated to implementing the foundation’s mission in the state, which has the 44th worst stillbirth rate in the nation, and frustratingly wide racial disparities.
One of our newest and most important initiatives is the Pregnancy Research Project. This project is a collaboration with the University of Michigan and a first-of-its-kind confidential database that will gather information from large populations of women regarding their pregnancies. It is hoped that research resulting from this project will build on prior findings regarding preventions and treatments for poor pregnancy outcomes. Anyone age 18 and up who has had a living child within the past five years or who is at least 12 weeks pregnant can participate in the Pregnancy Research Project, as can anyone age 18 and up who has ever experienced a stillbirth.
With pregnancy loss experienced by 1 in 4 women, it’s likely that this issue has affected you or someone you know. I welcome you to join our Let's Not Be Still Maryland Pregnancy and Infant Loss Awareness Walk to raise critical funds for our efforts to better understand stillbirth and perinatal loss and why it occurs, and to shatter the stigma, improve mental health care for bereaved families, and empower pregnant women. Together, we can save babies’ lives and create a safe landing space for families when they do experience this ultimate tragedy. Although it is too late for me and too late for my son, his memory gives me the strength and inspiration to fight for this mission. Thank you for your support.