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Breaking the Silence and Taboos on Stillbirth with Debbie Haine Vijayvergiya

By Chrysula Winegar

August 17, 2016

Around the world, members of Global Moms Challenge are taking action to make their communities a better place. We’re highlighting the stories of our members in a series called Global Moms in Action. This week we caught up with stillbirth mother and ASAP co-founder Debbie Haine Vijayvergiya.

What’s the cause or issue you’re most passionate about?

I lived 34 years of ignorant bliss, never knowing what a stillbirth truly was or that I was ever at risk. I think that up until the time I experienced stillbirth, I had heard the word used maybe once or twice.

Picture of Debbie Haine VijayvergiyaI soon learned that stillbirth isn’t as uncommon as we are led to believe. Unbeknownst to many, stillbirths cause approximately 26,000 deaths a year in the United States — that is approximately 2,000 babies dying each month (more than deaths resulting from SIDS and prematurity combined). Even with numbers like these, stillbirth remains one of the most understudied and underfunded public health issues today.

What led you to take up this cause?

In July 2011, I found out during a routine 2nd trimester checkup that our daughter Autumn’s heart was no longer beating. I was suddenly thrust into any expectant mother’s worst nightmare. Pregnancy is the gift of life — a miracle that, from an early age, we are led to believe will happen for us one day.

After losing Autumn, it took me a very long time to come to terms with our new reality. The only way that I could make any sense of our heartbreaking tragedy was to give it purpose. I couldn’t sit by and let others suffer like we had. I felt compelled to help; not just for me but for Autumn too.

The first time people hear about stillbirth shouldn’t be when it happens to them. We must break the silence and taboos around this topic. It is essential that we find ways to educate and empower expectant moms and families through their child-bearing years about the importance of prenatal care, the risks and realities of stillbirth and how to be an advocate for their unborn baby.

Picture of Debbie Haine Vijayvergiya

Can you give us some examples of ways you’ve taken action?

In 2013, I co-founded the Action for Stillbirth Awareness and Prevention (ASAP) Coalition (www.stopstillbirthasap.org). Our goals are to raise awareness and improve stillbirth outcomes here in the United States. We have been working to bring together individuals, medical professionals, associations and others interested in stillbirth to support the creation of a unified, focused national public awareness and education campaign.

While ASAP’s focus is at the national level, I wanted to see change happen in my own backyard as well.  I began working with New Jersey’s Senate Majority Leader Loretta Weinberg to get the state’s first ever stillbirth legislation passed.  On January 21, 2014, the Autumn Joy Stillbirth Research and Dignity Act was signed into law. My hope is that the Autumn Joy Stillbirth Research and Dignity Act will serve as a model for legislation in other states; to date four states are currently pursuing similar legislation. I am also proud to share that the Autumn Joy Act found its way into The Lancet’s 2016 Series on Ending Preventable Stillbirths.

Most recently in the beginning of 2015 I established The 2 Degrees Foundation Fund (www.the2degrees.org) to ensure that every New Jersey family who could benefit from the Autumn Joy Stillbirth Research and Dignity Act does so. Our vision is to give every New Jersey family a fighting chance against stillbirth.

Picture of Debbie Haine Vijayvergiya

How have you involved your community in your activism? 

Soon after losing Autumn I found myself writing quite a bit. I desperately needed to express my feelings. I have published various articles, been interviewed, and been widely quoted on this topic. I have also been engaging with other non-profit organizations, researchers, and key opinion leaders focused on improving outcomes in Maternal Child Health and stillbirth-related issues.

In this day and age, social media is a great way to build and sustain communities. I am not shy; I share my story with anyone who will listen. On a daily basis I’m either tweeting or posting on Facebook and Instagram.

Why do you think mother’s voices need to be more widely heard at all levels of society?

Without our voices; our babies’ stories will never be heard.

What often goes unnoticed is how surviving a stillbirth is a life-altering event. People don’t talk about it or consider the negative impact stillbirth has on our society.  The truth is that marriages fail, families fall apart, friendships dissolve, and careers are lost.

Picture of Debbie Haine Vijayvergiya

What are your hopes for the future on this issue? 

I hope more than anything that one day soon stillbirth will be recognized as the tragic maternal health crisis that it is. According to the 2016 Lancet Series on Ending Preventable Stillbirths, there are 24 countries with lower stillbirth rates than the U.S., and 154 countries that are reducing their stillbirth rates more rapidly than the United States. For a nation that is among the top 10 wealthiest in the world, I find these statistics shocking.

We can get there by enhancing our stillbirth surveillance and improving data collection. We must create a greater sense of urgency around the unmet needs in stillbirth to raise our social conscience on the topic and help generate increased funding for stillbirth research. Without extensive stillbirth research we will never fully understand why stillbirths occur or how we can improve survival. Lastly, I also believe it is critical that we build a national stillbirth awareness campaign to empower expectant mothers.

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Learn more about Debbie’s work at ASAP www.stopstillbirthasap.org and follow her on Instagram at stillbornstillmatters.

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