This past July, the NICU Parent Network (NPN) proudly hosted our very first Hill Day in Washington, D.C.—and what an unforgettable experience it was! Organizing such an event was no small undertaking, but it was worth every moment.
Before sharing the highlights of our big day, I want to express heartfelt gratitude to our generous sponsors: Prolacta Bioscience, AngelEye Health, Small Talk, the National Coalition for Infant Health, and so many others who believed in our mission. Your support made this milestone possible, and we couldn’t have done it without you.
For those unfamiliar with our work, the NICU Parent Network is the premier U.S.–based professional organization of NICU parent leaders. Together, we represent the needs and best interests of NICU families nationwide, envisioning a world where every NICU family is recognized as an essential and integral member of their baby’s care team. I am proud to be the President of this amazing organization.
Coming Together in the Nation’s Capital
The excitement kicked off the evening before Hill Day with a warm and welcoming reception at The Arlo Hotel, where we gathered with member attendees and sponsors from across the country. We were thrilled to welcome NICU parents from 20 states who traveled to D.C. to advocate alongside us.
(Tieast, VP; Kiera, Executive Director, Me, President)
(Arlo Hotel Reception)
The evening was filled with heartfelt introductions, meaningful connections, and plenty of laughter over the delicious food prepared by our hotel’s talented culinary team.
(Me)
(Tieast, our VP)
A Day on the Hill: Advocacy in Action
The next morning began with a shared breakfast and final strategy session as we organized into our assigned groups. Each group reviewed their talking points, ensuring we were prepared to share our stories and priorities with confidence, then we headed to Capitol Hill.
I shared my insight as a NICU mom of a micro preemie born at 23 weeks gestation, educator, and advocate, stressing the need to see parents as true partners in care. Tieast Leverett, NPN Vice President and mother of a 24-weeker, highlighted the importance of honoring each baby and family as unique individuals. Rebekah Mitchell, founder of M.E.N.D (Mommies Enduring Neonatal Death)., reminded everyone that not all NICU journeys end in survival and urged providers to offer compassionate, informed support that can make a terrible day “a little bit better or a whole lot worse.”
Rep. Morgan McGarvey (KY-03) spotlighted his newly introduced SPIN Act to ensure coverage of human-milk-derived fortifiers for premature infants, and Jamie Belsito of MMHLA revealed that 1 in 3 NICU mothers faces a perinatal mood or anxiety disorder—underscoring the urgent need for dedicated mental-health care.
(Senator McGarvey: KY)
John Myron, Policy Advisor to Rep. Rosa DeLauro (CT-03), spoke on the Congresswoman’s opposition to H.R. 2300, stressing that formula manufacturers must not be shielded from accountability when their products harm families and that safety and transparency must come before corporate protection.
Rep. Brittany Pettersen (CO-07) closed with a preview of her upcoming bill to expand FMLA by 12 additional weeks of unpaid, job-protected leave for NICU families. A new mom herself, she highlighted the urgent need for policies that truly support parents during their child’s hospitalization—drawing cheers from the audience.
(Congresswoman Brittany Pettersen)
By the end of the day, our members had completed an incredible 75 meetings with members of Congress and the House of Representatives. During these conversations, we emphasized the importance of co-sponsoring House Resolution 236, a measure rooted in NPN’s long-standing NICU Baby’s Bill of Rights.
Originally introduced as the NICU Parent’s Bill of Rights, this guiding document has evolved over the years to include more inclusive language, reflecting our commitment to ensuring that the voices of NICU families and their babies remain at the heart of neonatal care.
(Me & Stephanie Vaughn)
(I finally got to ride the Senate Subway!)
Our advocates also spoke about several other key bills supported by NPN, sharing their lived experiences to demonstrate why these policy changes matter so deeply for the health and well-being of NICU babies and their families.
(Zoe Rose, the angel baby that started it all, with her Mom, NPN Founder and Executive Director, Keira)
Reflecting on a Historic Day
The feedback from our attendees has been overwhelmingly positive. Many shared that meeting face-to-face with legislators was empowering and deeply impactful. While we learned valuable lessons that will help us improve our planning for future events, we left the Hill feeling energized and hopeful for what lies ahead.
How You Can Help
We invite you to join us in keeping the momentum going:
- Click Here: Read and Share the NICU Baby’s Bill of Rights
Help us spread awareness by sharing this document with the doctors, nurses, and support staff in your local hospitals, as well as with your personal networks. - Click Here: Urge Congress to Support House Resolution 236
Sign our pre-formatted letter asking your representatives in Congress to co-sponsor H.R. 236 and encourage the creation of a companion bill in the Senate.
All it takes is adding your name and ZIP code, though you’re welcome to personalize your message.
PLEASE SHARE AND SIGN!
Our first Hill Day was a remarkable step forward for NICU families nationwide.
Thank you to our sponsors, our passionate members, and every advocate who continues to stand with us. Together, we’re proving that the voices of NICU families can—and will—shape the future of neonatal care.
We hope to do this again next year!