Each year on November 17th the world takes a moment to acknowledge those that were born prematurely on World Premature Day. Millions wear purple ribbons in recognition of the need for policy and advocacy for those born prematurely. For, National Collaborative for Infants & Toddlers member organization, Once Upon a Preemie (OUAP) the significance is amplified as their mission is to eliminate the disparities that exists in NICU’s around the country. This year they held their Third Annual Once Upon A Preemie Conference, on November 17-18, 2024, in Philadelphia. The conference brought together more than 180 healthcare professionals, policymakers, advocates, and families to focus on advancing Black maternal health and neonatal equity. Organized under the theme “Advancing Solutions and Bridging the Gap”, the event offered impactful discussions, workshops, and networking opportunities aimed at addressing persistent disparities in care for Black birthing families and preemie babies.
On November 17, the official recognition of World Preemie Day, OUAP held a fundraiser to raise money for continued advocacy efforts. The conference began with Jenné Johns, MPH, President of Once Upon A Preemie, outlining the organization’s mission to advocate for culturally responsive and equitable neonatal care. One of the key points from the conference that can help with advocacy during these polarizing times, was understanding that yes Black Maternal Health is an equity issue, but it’s also an economic issue as billions of dollars are spent on care to address the failures of inequity in NICU’s all around the country. Understanding how we frame issues may become more important depending on political leadership, but getting to solutions is critical.
During her panel Dr. Kanika Harris reminded attendees, “maternal health is the marker for the health of the nation.” It was this conversation that led to discussion about March of Dimes, another NCIT member, newly released maternal health report card which highlights the collective factors that contribute to maternal and infant mortality and morbidity. You can see that report card here.
OUAP is an organization doing phenomenal work to address disparities and improve birthing outcomes for women of color. They have developed a Once Upon a Preemie academy that currently offers 4 courses. The academy is for nurses, doctors and doulas and can provide continuing education credits. We learned about how they have been on the frontlines in Pennsylvania in getting legislation passed that reflects the Momnibus on the federal level. They have passed 3 of 13 pieces of maternal health legislation on the state legislature.
The conference progressed with sessions emphasizing lived experiences and actionable strategies:
“When Nurses Turn NICU Moms”
Black nurses shared their dual perspectives as healthcare providers and NICU parents. Panelists like Candace Brown, BSN, RN, and Keisha Christopher, RN, highlighted how personal experiences influence their advocacy for equity in neonatal care.
“Driving Equity Through Training “
This session advocated for implicit bias training as a critical step in addressing systemic inequities within the NICU.
One of the vital segments of the conference were the sessions designed specifically for skill-building. These sessions left participants with tangible strategies that they can include in their toolbox for neonatal equity and care. These interactive workshops addressed various dimensions of care:
“Parent Advocacy Training”: Led by “Jaye” Wilson, LPN, attendees learned to harness personal stories for advocacy using the “Find Your Roar” framework.
“Engaging Black Fathers”: Joshua Gaston, BS, emphasized the importance of involving fathers as integral caregivers during and after pregnancy.
Keynote Address
Rose L. Horton, MSM, RNC-OB, shared her call to action against rising maternal mortality rates with an emphasis on nurses as changemakers.
The conference concluded with an awards ceremony, recognizing trailblazers in Black maternal and neonatal health, and a “Wine Down” networking session for attendees to foster future collaborations.
A Call to Action
The Once Upon A Preemie Conference serves as a critical platform for uniting diverse voices to tackle systemic inequities. As attendees return to their communities, they are encouraged to implement the solutions discussed and drive forward the movement for Black maternal and neonatal equity.
For more information about the event and its mission, visit Once Upon A Preemie at https://onceuponapreemie.org.
