When parents and families find themselves with a baby in the NICU, they often times feel isolated and alone. Despite the staggering statistic that 1 in 9 babies are born too soon, too small or too sick to make it on their own, families report over and over that they feel very alone on their journey.
Patient+Family Care loves to share resources and helpful websites that help parents most during their stressful and difficult time. Read below to see what recommendations we have today!
Do you have additional resources you want to make sure we know about so we can share them in future posts? Comment and let us know!
#1 NICU Parent Network
This organization is what we consider a "one-stop-shop." The NICU Parent Network (NPN) is a network of organizations that offer support to families of NICU infants. They are the only professional association for NICU Parent Leaders in the United States. NPN provides a platform for NICU Parent Leaders to come together as a collective voice representing the needs and best interests of NICU families in all facets of healthcare policy, care guidelines, advocacy, education & family support.
The majority of member organizations were started BY graduate NICU families, that have used their personal experience to help improve the experience of others. They have first hand knowledge as to what would have helped THEM during their NICU stay, and are determined to help provide that so other families have the best resources they can.
Visit their site at https://nicuparentnetwork.org/
#2 Preemie World
Parents of premature infants are often caught unprepared by early birth, and can quickly become overwhelmed by their new child's needs and the unfamiliar world of the NICU. Mom's and Dad's are thrust into a high-stress, high-stakes situation where they are expected to make decisions for their child based on medical information they have no prior exposure to.
Preemie World understands often difficult position parents of premature children find themselves in after experiencing early birth. They also recognize that neonatal staff don't always have enough time to seek out resources to learn how to relay sensitive subjects to parents. Therefore, Preemie World provides coaching to the dedicated NICU staff through education and information as well as ongoing support and education to NICU families.
You can learn more about Preemie World, and sign up to receive their beneficial resources at https://preemieworld.com/
#3 Hand to Hold
Hand to Hold helps families before, during and after a NICU stay, as well as infant loss, by providing powerful resources for the whole family, and most importantly one-on-one mentoring from someone who has been there.
This organization offers peer-to-peer connections, on-line communities, hospital resources, a great blog and even podcasts! When you find yourself feeling alone and scared, grab for a comforting hand to hold!
Visit their website at https://handtohold.org/
#4 Tiny Miracles Foundation
The Tiny Miracles Foundation was founded in 2004, as one of the first organizations to offer a range of parent support services in hospitals for parents of premature babies. They are based in Fairfield County, Connecticut and partner directly with 5 area hospitals in their community and beyond.
This organizations provides support services for families with a baby currently in the NICU; Support services for families that have a NICU graduate; and Support services for families that have experienced the loss of a premature baby.
Learn more about this great organization by visiting https://ttmf.org/
#5 Grahams Foundation
This organization has a vision of having a world where no parent goest through the experience of prematurity alone. They aim to provide support, comfort, information and guidance to families who experience the birth of a premature infant. They also collaborate with healthcare community parents of preemies to improve the well-being of preterm babies and families.
Graham's Foundation has several main programs that include:
Learn more how Graham's Foundation can help you and how YOU can support their work so they can continue providing their amazing support to families by visiting https://grahamsfoundation.org/
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Up next: NICU Parent Resources Part II