Our Impact
Highlighting the Many Ways we Work with Industry
The NPN provides a platform to bring the collective voice of NICU families to the forefront. We are often asked to participate in studies, surveys, and focus groups that guide advocacy and care guidelines. Below are just some examples of how the NICU Parent Network is providing a superior standard of insight and enlightenment on topics related to Maternal Infant Health.
A Family-Inclusive Taskforce for Improving NICU Quality of Care
“In a short time, the FCC Taskforce has assembled a global team to actively break down arguably the biggest unspoken silo in NICU: the divide between clinician and family. To make this shift sustainable, we must prioritize educational awareness around FCC principles, which is one of the primary goals of the FCC Taskforce. The next step is for FCC to become the standard of care in every NICU.”
States Can Support NICU Families with Expanded Leave: New Guide on Best Practices
NPN worked with A Better Balance to secure a paid NICU leave expansion that added up to 12 additional weeks of paid NICU leave to Colorado’s Family and Medical Leave Insurance (FAMLI) program, which 1,500 Colorado NICU parents have applied to take since it went into effect in January 2026.
Letter Urging Congressional Oversight on New Childhood Vaccine Recommendations
NPN endorsed this letter urging swift and robust oversight over the recent changes to the CDC childhood immunization recommendations. Because of this effort, the American Academy of Pediatrics was able to get 230 medical, public health and patient advocacy organizations to sign on. The letter was sent to every member of Congress.
Letter to the editor: The real story behind the infant formula lawsuits
When your baby is born too soon, every decision in the NICU feels overwhelming. Families and their care team work side by side, making critical decisions every day guided by the best information available.
What we have seen in testimony from some of the formula lawsuits is that companies failed to report safety concerns and even death linked to their products. This means life-saving choices have been made without all the facts.
We at NICU Parent Network are not anti-formula. We know doctors need every safe tool in their toolbox. What we are asking for is quite simple: transparency, accountability, and informed consent. Parents deserve to understand the risks and benefits of every nutrition option, and every baby deserves the safest possible start to life.
We do not believe a sweeping liability shield is the answer. We believe collaboration is the key to developing solutions that are truly family-centered.
Evaluation of a course for neonatal fellows on providing psychosocial support to NICU families
“The Culture of Research Communication in Neonatal Intensive Care Units: Key Stakeholder Perspectives”
“Quality of life”: parent and neonatologist perspectives
“NICU families were identified in two ways. First, Internet searches were conducted that generally identified active support or advocacy groups that specifically targeted NICU families. “Family” for the purpose of this survey was defined as “any individual who identified as a parent, guardian, or primary caregiver of a child who spent some time in the NICU”. Groups were defined as “active” if they had one or more posting online within the previous 3 months. The Preemie Parent Alliance, now the NICU Parent Network, was one of most significant contributors, distributing the survey via their multiple social media channels to the 37 member organizations under their umbrella. . . .”
Adams, S.Y., Tucker, R., Clark, M.A. et al. “Quality of life”: parent and neonatologist perspectives. J Perinatol 40, 1809–1820 (2020). https://doi.org/10.1038/s41372-020-0654-9
Parent Engagement in the NICU
NICU Parent Network was asked to participate in this survey as part of a research project to better understand parent engagement in the NICU. The research was being conducted by a Nurse Scientist at Connecticut Children’s Medical Center.
