The Urgent Need for Better Data and Advocacy

This week, I, along with more than 50 other advocates and parents of stillborn babies traveled to D.C. and met with more than 100 of our country's representatives, senators, and their staff. I hated being there and wished I wasn't. But, I didn't have a choice. My family's world was shattered when, at 8 months pregnant, I gave birth to my stillborn daughter Lucy. With each step at the capitol, I carried Lucy's memory and our shared mission to ensure no other family experiences the anguish we did. We shared our stories and emplored our elected officials to support legislation designed to prevent stillbirth.

Working in health analytics, I've seen the significant gaps in data collection and quality in other realms of health but, my personal and professional life collided after the death of my daughter. As both a bereaved mother and a health analytics professional, I find the gaps in maternal and fetal health deeply concerning and a key contributor the the tens of thousands of deaths each year. Nearly 1/3 of all stillbirths in the U.S. are un explained simply because there is no concerted effort to understand the cause. We have the potential to prevent countless stillbirths, but the lack of quality data and awareness stands in our way. Addressing this issue is the driving force behind my advocacy and involvement with the SHINE for Autumn Act and the Maternal and Child Health Stillbirth Prevention Act s of 2023.

The best part of these acts is that we already know they will work and save lives. Many of these programs and campaigns were enacted in Iowa and within 10 years, the stillbirth rate declined by a whopping 32%.

For the U.S. as a whole, Stillbirth is a devastating public health crisis. The CDC reports that approximately 24,000 babies are stillborn every year. Mothers who endure this loss face not only immeasurable grief but also a higher risk of death after delivery, with severe morbidity almost five times more common than in mothers whose babies are born alive. Shockingly, despite its prevalence, stillbirth rates have stagnated over the last 15 years.

The U.S. has seen a meager decline of 0.5% annually over the last two decades, placing us at an alarming 183rd out of 195 countries worldwide.

Furthermore, racial and ethnic disparities persist. Black and Native American families experience stillbirths at twice the rate of their white counterparts. While studies estimate that 25-75% of US stillbirths could be preventable, vital records, our only national data source, often suffer from inconsistent definitions and poor quality.

Legislation like the Stillbirth Health Improvement and Education (SHINE) for Autumn Act (S.2647 /H.R.5012 ) is spearheading efforts to address this crisis. I am incredibly grateful to the lead sponsors: Congresswoman Young Kimkathy castor (CA-40), Congresswoman U.S. Rep. Kathy Castor (FL-14), Congressman David P. Joyce (OH-14), Congresswoman Robin Kelly (IL-02), along with Senator Cory Booker (D-NJ) and Senator Marco Rubio (R-FL).

The SHINE for Autumn Act aims to:

• Provide $5 million annually to support state data collection on stillbirths and risk factors.
• Allocate $3 million annually for a research fellowship on stillbirth, focusing on fetal autopsies and improving education, data collection, and research.
• Designate $1 million annually for the development of guidelines and educational materials regarding stillbirth data collection and sharing.

The story behind this Act is heart-rending. Autumn Joy, like my Lucy, was born still. Her death in 2011 sparked a mom on a mission to end this painful maternal and family health crisis. Our personal stories underscore the urgent need for policy interventions. This act is not just a bill but a beacon of hope to end preventable stillbirth.

My personal journey with Lucy has shaped my perspective in health analytics, showing me the tremendous gaps and disparities we face. While we cannot bring back the children we've lost, we can fight for a future where stillbirths are a rarity. The SHINE for Autumn Act and the Stillbirth Prevention Acts of 2023 are vital steps in that direction. With continued advocacy, research, and data-driven interventions, we can make a difference.

If you'd like to support our cause you can in many ways!

Write your officials - yes, they actually listen

Donate to:

• SHINE For Autumn Act - help fund critical advocacy and resources
• Healthy Birth Day - Creator of proven stillbirth reduction technique, Count The Kicks PUSH For Empowered Pregnancy - Stillbirth Awareness through aggressive awareness campaigns