HOW WE BEGAN
In 2012, on the very first Parents of Preemies Day, PPA was launched with 6 member organizations. By the end of 2015, PPA has grown to 29 member organizations; turning tragedy and trauma into something that breeds hope and empowerment for other parents. At the heart of everything we do, and everything we want to do, we are all striving for a world where every parent of a preemie feels supported.
Preemie Parent Alliance is comprised of business leaders, non-profit executives, advocates, educators, authors, developmental care and peer support specialists. We provide parent review boards unmatched anywhere else.
NICU PARENT’S BILL OF RIGHTS
In 2013, PPA proudly unveiled the NICU Parent’s Bill of Rights at the National Association of Neonatal Nurse’s conference in Nashville, Tennessee. We received wonderful feedback from the nurses, parents, and advocates in attendance. This collaborative project was developed to help address and break down barriers that often prevent NICU parents from bonding with their baby and playing an active role in their daily care. In order to care for a medically fragile infant after the NICU, parents must feel empowered, competent and capable of being their baby’s advocate and caregiver. Therefore, they must be encouraged and supported throughout their baby’s NICU journey. The NICU Parent’s Bill of Rights is a list of ten essential rights that all NICU parents should expect during their child’s NICU stay.
Today, we have 29 organization members across the country. Each organization is run by a Professional who also happens to be a Parent of a Preemie. The Presidents and Executive Directors come from a variety of career worlds including Executive Level Marketing, Communications, and IT. We have a PhD level engineer, Masters level teachers and social workers. We even have a Police Officer with 20+ years on the force and one mom who was an Army Major.
This is a unique subset of organizations offering services along the continuum of care from the high risk pregnant mother through the NICU stay, post-discharge, and beyond into early childhood years. Prematurity is a demographically diverse, multi-layered, complex problem plaguing the United States with 500,000 babies being born preterm every year. The Preemie Parent Alliance was founded on the belief that no single organization can serve all of these parents in all of the ways they need to be supported and do it well. But together, working in collaboration, not competition, we can make a much more meaningful impact on this population.
WITHIN OUR MEMBERSHIP ORGANIZATIONS, WE HAVE:
Infants born Preterm
Gestational Age Range
Until recently the parent voice has not been properly represented in all facets of healthcare policy, advocacy, education, & family support. Some progress has been made but we have a long way to go before recognizing a parent leader as the “expert” is standard practice. With the advent of developmental and family-centered care we are making progress. But prematurity, for the most part, is a problem of many disparities which stretch from the ground level of NICU staff education & parent education on up to the authoritative and legislative bodies crafting healthcare policy.
PPA has just begun our crusade. We started and continue to grow on a two-fold foundation that we want to be very network centric, meaning focusing on impact we can achieve together.
Where do we go from here?
The first leg of our foundation is to connect our members with one another, to foster a sense of community among the leaders of our members, to build trust with one another, and to encourage collaboration.
Providing the proper tools and opportunities to ensure the voice of the parent is fully understood, acknowledged and integrated when standards of care guidelines are drafted, hospital policies are created and implemented, and educational materials are created.
Building Sustainable Relationships
Our vision is to partner with professional provider associations, and others in the maternal infant health community so that our network, and the many parent leaders within it, become a “go to” resource for parent insight, expertise, and standards of care.
Equally important is for our network and our members to be actively engaged with industry leaders. Anything that is developed and used by or for our babies should include parent insight and participation as a part of the process – from research and development, trials and data collection, to end product and user.