Autumn Joy — ASAP: Action for Stillbirth Awareness & Prevention
After Autumn Joy died at 22 weeks gestation, Debbie Haine began raising awareness, drafting legislation and sparking conversation on the subject of stillbirth.
When Autumn Joy died at 22 weeks gestation from an umbilical cord anomaly, her mother, Debbie Haine, was shocked. As she delivered her baby and processed her grief, Debbie was astounded by how little awareness she’d had and conversation there was around the subject of stillbirth. As she dealt with insensitive treatment in the hospital, she was angered by the lack of compassionate and professional stillbirth standards of care for hospital personnel working with grief stricken families. As time went by, Debbie grew frustrated by the lack of resources, research and accountability she found specifically associated with the subject of stillbirth.
Debbie had two early miscarriages and understood how difficult it is for women to discuss, but the subject of stillbirth simply never came up. “It was never a topic of conversation. I didn’t even know what stillbirth was. Even as I was recovering from my daughter’s birth and grieving, I never heard anything about stillbirth. Everything I read and all of my doctors used the clinical term ‘fetal demise’ to talk about it. There was nothing touchy-feely about those words. As I met other women who’d gone through the same experience as I had, ‘stillbirth’ was the word they used that made the experience less medical and more personal.”
Autumn was stillborn in July 2011 and that’s when Debbie’s commitment to help other mothers avoid this tragedy began. After extensive research, she became a presenter at the 2012 International Conference on Stillbirth, SIDS, and Infant Survival. While there, she met a group of supportive women, healthcare professionals and advocates that shared her focus on creating awareness around stillbirth and together they formed the ASAP Coalition to raise awareness and improve outcomes in stillbirth. Debbie says, “I want there to be as much awareness around stillbirth as there is about SIDS. Everybody knows about Sudden Infant Death Syndrome. Nobody talks about how to avoid stillbirth.” One of ASAP’s first initiatives was to create a nationwide campaign for stillbirth awareness and education.
Debbie says, “The statistics are shocking. Approximately 26,000 babies a year, 70 each day… are stillborn in the U.S. alone. That’s more than all the deaths from Sudden Infant Death (SIDS) and prematurity combined. Many of these babies are of viable gestational age. I’ve met women whose babies died on their due dates when previously they’d been completely normal. It is often assumed and talked about that stillbirth can’t be predicted or avoided. However, there are a number of things that can be done to reduce the risk and we are learning more each year. Pregnant moms who are at high risk can be more closely monitored. Physicians can be more careful about monitoring fetal growth. More than half of all stillbirths occur to babies with intrauterine growth restriction.”
In addition to working with ASAP to raise awareness, Debbie helped draft legislation called the Autumn Joy Stillbirth Research and Dignity Act, which was introduced last month by Sentate Majority leader Loretta Weinberg (D-NJ) and co-sponsored by Senator Dawn Marie Addiego (R-NJ). Debbie will be testifying in front of the Senate Health Committee on June 13th and she had her ASAP colleagues are working to form an interagency meeting between the National Institutes of Health, the Centers for Disease Control and the Health Resources and Services Administration.
It’s a tragedy that Debbie has become the flag bearer for stillbirth, but we think she’s the powerful force needed to bring this painful subject the level of attention is deserves. We’ll be thinking about Debbie and Autumn on June 13th as she speaks for thousands of grieving families and we’ll be there in spirit to provide our support.
