As a Preemie parent, you certainly know the total uncertainty the whole experience can bring. So often a premature birth is not expected. Over the years I have read hundreds of stories of mother's who went into the Doctor's office to be told of a serious situation in regards to their pregnancy that required an immediate c-section or bedrest that resulted in delivering a premature baby. No matter how your little one decided to come early, it is a scary and difficult time for all involved. It is nice to know that there are organizations that have been formed over the years to help support preemie parents during this journey. Many of these non-profits started because of parents going through their own NICU journey and wanting to give back and help support other parents. We are highlighting five of these support groups on this blog post, there are many more, and we hope you can find some help with one of them.
1. March of Dimes
We are listing March of Dimes as number one because most people have heard of them over the years. With great sponsored walks along with sponsored Preemie Awareness Month and National Prematurity Day, they certainly have done a lot to bring prematurity awareness to the World.
"March of Dimes leads the fight for the health of all moms and babies. They believe that every baby deserves the best possible start. Unfortunately, not all babies get one. March of Dimes is on a mission to change that.
For 80 years, March of Dimes has helped millions of babies survive and thrive. Now they are building on that legacy to level the playing field for all moms and babies, no matter their age, socio-economic background or demographics. They support moms throughout their pregnancy, even when everything doesn’t go according to plan."
2. Hand to Hold
Hand to Hold is an organization that definitely came to birth with the early birthday of Kelli Kelley's son, Jackson. Hand to Hold offers support in many different ways, their website offers a podcast, events, resources, and ways to get involved. Here is a little more about why Hand to Hold got started:
“I don’t ever want another NICU parent to feel alone like I felt.”
Alone is exactly how Hand to Hold founder Kelli Kelley felt after she delivered her son, Jackson, at 24 weeks, weighing just one pound, eight ounces. Her baby was alone, fighting for his life in the NICU. Her husband was alone, fielding overwhelming information from doctors and nurses. And she was alone in her room, recovering from an emergency C-section and wondering if her baby would survive.
Despite being surrounded by friends and family, Kelli lacked the support she craved – someone to hold her hand through the difficult road of being in the NICU and bringing home a medically-fragile child. It was this need that inspired Kelli to start Hand to Hold, a peer support network for NICU and bereaved families.
WHAT WE DO
Hand to Hold helps families before, during, and after a NICU stay and infant loss by providing powerful resources for the whole family, and most importantly, one-on-one mentoring from someone who has been there.
Our resources include in-hospital programs, articles and blogs, podcasts, social networks, and trained peer mentors. All were designed with the emotional, physical, and social needs of the whole NICU family – including siblings and grandparents. Our caring professional, experienced team comprised of NICU graduate and bereaved parents are trained as certified Peer Support Specialists through the state of Texas. These Ambassadors uses their personal and professional experiences to ensure all Hand to Hold programs and services work for our NICU families, at every step in the journey.
3. Graham's Foundation
Graham's Foundation was birthed in 2009 to honor Jennifer and Nick Hall's son, Graham. Graham’s Foundation’s support programs are designed to meet the unique needs of families after preterm birth.
- NICU, transition home, and remembrance care package programs
- Trained preemie parent mentors available 24/7 via email, phone, and text
- MyPreemie, the market-leading app for parents of premature babies
- Online communities with tens of thousands engaged parents making new connections
- Parents of Preemies Day recognizes the courage and commitment parents of preemies demonstrate as they care for and advocate for their babies and children
- Advocacy for tomorrow connects organizations, medical professionals, and brands with preemie parent voices to impact positive change for preemies and their families.
- Active online communities let us quickly collect self-reported data from parents about their experiences in the NICU and beyond
- We give professionals access to parents of preemies ready to talk about what they really needed and wanted in the hospital and at home
- Research for the future supports innovation that can impact future outcomes for preemies and their families.
- We shape and support breakthroughs through strategic partnerships
- Our focus is not only on outcomes but also family-cohesive care in the NICU
- Our connection to real parents empowers us to increase awareness of neonate-focused clinical trials
- We represent the voice of preemie parents at conferences attended by thought leads in the prematurity space
- We are committed to a world where no parent goes through the preemie journey alone.