Raising Our Voices on Capitol Hill: The Second Annual NICU Parent Network Hill Day

On June 10–11, 2026, NICU Parent Leaders, bereaved parents, advocates, and organizational representatives from across the country gathered in Washington, D.C., for the NICU Parent Network’s Second Annual Hill Day.

Our two-day event began at 5:30 p.m. on June 10 at the YOTEL Washington DC, located at 415 New Jersey Avenue NW, and continued through the evening of June 11. As President of the NICU Parent Network, I am incredibly proud to help lead this growing national advocacy effort and to stand beside people who have transformed some of the most difficult experiences of their lives into a powerful force for change.

Turning Lived Experience Into Legislative Action

The purpose of NPN Hill Day is to bring NICU and bereaved parent leaders, advocates, and allies directly to Capitol Hill to speak with congressional offices about the needs of babies and families affected by premature birth, medical complexity, NICU hospitalization, and pregnancy or infant loss.

Our goal is not simply to raise awareness. We want to turn the lived experiences of families into meaningful and lasting policy change.

This year, our advocates focused on family presence and parental involvement in the NICU, mental health resources, access to safe donor human milk, paid family leave, stillbirth research, prematurity research, and other policies that can improve outcomes for babies and their families. Every meeting provided an opportunity to help legislators understand that NICU policies are not abstract issues. They affect real babies, parents, siblings, and families during some of the most vulnerable moments of their lives.

Preparing to Advocate Together

Hill Day began with registration and a welcome reception in the Grand Hub West at YOTEL Washington DC. Advocates enjoyed hors d’oeuvres and refreshments while reconnecting with colleagues and meeting other NICU Parent Leaders from across the country.

Following welcome remarks and the distribution of final congressional meeting schedules, participants gathered with their state delegation teams. These meetings allowed each team to review the legislative priorities, discuss personal stories, assign speaking roles, and prepare clear requests for members of Congress.

The following morning began with a breakfast buffet before participants traveled to Capitol Hill. From 9:30 a.m. until 4:30 p.m., advocates attended individualized meetings in House and Senate office buildings. After a full day of advocacy, we gathered for a group photo and then concluded with a debriefing and congressional reception in Room 2060 of the Rayburn House Office Building.

 

Although each person brought a different story to Washington, we carried one shared message: NICU families must be informed, included, supported, and respected as essential members of their babies’ care teams.

From Our NICU Baby’s Bill of Rights to H.Res.236

One of our central Hill Day priorities was H.Res.236, a resolution expressing congressional support for the goals of a “NICU Baby’s Bill of Rights.”

Introduced by Representatives Erin Houchin and Morgan McGarvey in March 2025, H.Res.236 calls for a more family-centered approach to neonatal intensive care. It recognizes parents as their babies’ most important advocates and encourages hospitals to establish clear policies prioritizing parental presence, integration, and collaboration.

Please click HERE to read the text of H.R. 236.

The resolution also promotes informed consent for major care decisions, including treatment plans and infant nutrition; comprehensive discharge planning developed with families; and access to mental health, counseling, support groups, and peer-to-peer programs for parents and caregivers.

H.Res.236 did not appear overnight. It grew directly from the NICU Parent Network’s longstanding work on our NICU Baby’s Bill of Rights.

NPN first developed a NICU Parent’s Bill of Rights in 2013 as a collaborative effort to address the barriers that often prevent parents from bonding with their babies or participating fully in their daily care. Over time, we revised and expanded the document, using more inclusive language and reflecting the changing needs of NICU babies and families.

At its foundation is the belief that care should be family-integrated, developmentally appropriate, individualized, and supportive—and that parents are not visitors in the NICU. They are essential members of their child’s care team.

Although H.Res.236 is a congressional resolution rather than a new federal law, it represents an important national statement supporting these principles. It brings the voices and priorities of NICU families into the halls of Congress and encourages hospitals, healthcare professionals, and other stakeholders to strengthen family-centered care.

Meaningful Support From My Representative

I was especially proud that my local member of the House of Representatives, Congressman Mike Lawler of New York’s 17th Congressional District, signed on to cosponsor three of the measures we supported:

• H.R.1197, the PREEMIE Reauthorization Act of 2025, which supports continued federal research, education, data collection, and coordinated action related to preterm birth and the care and long-term outcomes of premature and low-birthweight infants.
• H.R.8964, the Developing Oversight for Nutrition Through the Official Regulation of Milk Act, or DONOR Milk Act, which seeks to improve the safety and regulation of pasteurized donor human milk.
• H.Res.236, expressing support for the goals of the NICU Baby’s Bill of Rights and promoting family-centered, informed, and collaborative NICU care.

Congressman Lawler represents New York’s 17th District, which includes Putnam County and communities throughout the Hudson Valley. His decision to cosponsor these measures demonstrates the importance of meeting directly with elected leaders, sharing our experiences, and making specific requests for action.

Our Voices Are Making a Difference

Hill Day reminded us that advocacy is not only about legislation. It is about relationships, education, persistence, and the courage to tell deeply personal stories so that future families may have better experiences and stronger support.

I am proud to serve as President of the NICU Parent Network and to lead alongside such passionate and dedicated NICU Parent Leaders. I am equally proud of every advocate who entered a congressional office, shared a story, explained why these policies matter, and asked our elected officials to act.

Our babies’ stories matter. Our families’ experiences matter. Our voices matter.

Together, we are ensuring that NICU families are not simply included in conversations about neonatal care—they are helping lead them.

Sponsors

To our sponsors, who without their support we could not have held such a successful event. Thank you to Prolacta Bioscience, AngelEye Health, Project Sweet Peas, National Coalition for Infant Health, GE Healthcare and A Better Balance.

What can you do?

Please take a moment to sign the letter asking your members of Congress to support H.Res.236 and the goals of the NICU Baby’s Bill of Rights. You can personalize the message with your own NICU experience and help ensure that babies and families receive the respect, inclusion, support, and family-centered care they deserve. Together, our voices can move this important resolution forward.

Click the link to sign it, please at: https://infanthealth.org/support-h-res-236-nicu-babys-bill-of-rights/

It was a great time to be Washington, DC. Happy 250th Birthday to the United States of America!

Thank you for your continued following and unwavering support of my work in improving the pediatric and maternal health care experiences of babies and families.