Debbie Haine Vijayvergiya is dedicated to taking the taboo out of stillbirth while striving to improve outcomes in this under-recognized maternal health issue.
In July 2011, my world was turned upside down. At a routine 22-week checkup my obstetrician could not detect my baby’s heartbeat.
I never knew the true definition of stillbirth. I think up until this time I had heard the word used once or twice. I honestly didn’t understand it and I certainly couldn’t comprehend how my low-risk, healthy baby pregnancy had ended this way.
Stillbirth causes approximately 26,000 deaths a year in the United States — more than the deaths resulting from SIDS and congenital anomalies combined. That is 70 babies a day, over 2000 babies dying each month. No matter how you slice the data, that is a large number. I couldn’t sit by and let others suffer like we had. I had to do something.
I found myself spending hours on the internet researching and calling different organizations/tracking down top researchers trying to understand why stillbirths occur and how we could improve outcomes. Everyone I reached out to was patient and interested in helping me.
The stillbirth community welcomed me with open arms. I was honored when I was invited to present at the 2012 International Conference on Stillbirth, SIDS, and Infant Survival. While there, I met a group of amazing women, healthcare professionals and advocates that shared my focus on creating awareness around stillbirth and together we formed the Action for Stillbirth Awareness and Prevention Coalition (ASAP www.stopstillbirthasap.org) to raise awareness and improve outcomes in stillbirth here in the U.S.
While ASAP’s focus is at the national level, I knew that change had to take place at the local level as well. I was very fortunate to get the attention of New Jersey Senate Majority Leader Loretta Weinberg who was interested in helping me. And over the course of a few months, with the hard work and dedication of the Senator’s office, the Autumn Joy Stillbirth Research and Dignity Act became a reality.
The bill requires the state to establish policies and procedures for the dignified and sensitive management of each stillbirth, in consultation with nursing, psychology and social work professionals. The state will also be required to establish protocols for evaluating fetal death to ensure doctors and hospitals report accurate and complete data to the state. With that information, state health officials can create a database to increase our knowledge of stillbirth.
Getting this bill passed is just the beginning of my journey to bring attention to this critical cause. My hope is that the Autumn Joy Stillbirth Research and Dignity Act will serve as a model for legislation to be passed in every state. These babies are our future, and they deserve a chance.
This bill honors not just Autumn Joy but all the angel babies that never had the chance to see the immense love in their mommy and daddy’s eyes.
Debbie Haine Vijayvergiya lives in Maplewood with her husband and two young children. She is in the process of completing a compilation of women’s stories on their experience with stillbirth and miscarriage. If you’re interested in sharing your story with Debbie or simply want to reach out, feel free to email her atdebbie@dlh-associates.com.
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