Organization: NICU Parent Network (formerly Preemie Parent Alliance)
Founder: Keira Sorrells
We are focused on representing the needs and best interests of NICU families. What makes our network truly unique is that we are the only US-based organization that is a collaborative of organizations that are either run by or were founded by a parent who had a NICU experience or has lost a child.
As Founder and Executive Director of the NICU Parent Network (formerly Preemie Parent Alliance), Keira Sorrells has been leading the movement to elevate the NICU Parent Leader as a professional in maternal-infant health. After giving birth to triplets at just 25 weeks 5 days gestation and losing one of her daughters at 14 months old, Keira was propelled into maternal-infant health out of a deep-seated desire to ensure no parent experiences the trauma of a NICU stay or loss alone. She realized that industry and provider associations that develop care guidelines or create products that are used by or for NICU babies by and large did not include parents in their development.
We believe collaboration is the key to unlocking innovative solutions to some of the world’s most complex social and medical issues. Everyone in Maternal Infant Health has an equal and welcome seat at the table because we are all approaching the same ultimate goal by way of our own unique strategies. It is ineffective, inefficient and frankly, impossible to tackle the myriad of issues facing NICU families and their babies in silos. By working together we can ensure that every NICU family is equipped and empowered to face the long-lasting effects of a NICU stay during and after their time in the hospital.
Over the last decade, NICU Parent Network has become a sought-after resource and collaborative partner for providers, researchers, industry and other stakeholders in this niche of healthcare. Believing that parents are the key stakeholders and the key informants in maternal-infant health and that nowhere else in healthcare is this more important than in matters related to neonates, a patient population that cannot speak for itself. Our network is passionate about strengthening the NICU Parent Leader community so that every aspect of maternal-infant health will be improved through informing product development, research protocols, standards of care, and educating families, communities, and providers resulting in families who thrive.
NICU Parent Network has co-developed an online staff education program in partnership with the National Perinatal Association and Patient + Family Care. This program is available at www.mynicunetwork.com and is based on NPA’s Interdisciplinary Recommendations for Psychosocial Support of NICU Parents: http://www.nationalperinatal.org/resources/Documents/JP%20Psychosocial%20Support%20SupplementFinal%20(1).pdf
A QI study, published here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6882527/pdf/ancr-19-490.pdf showed that the online course was effective in improving staff knowledge and attitudes toward psychosocial support of NICU parents.
NICU Parent Network also co-produces a webinar series in collaboration with National Perinatal Association’s Family Advocacy Network on topics of interest to family advocates and NICU providers. The full library is available at no cost to members of NPN and NPA and many previously recorded webinars can be viewed here: https://nicuparentnetwork.org/webinar-series/