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 professionals, an 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 of 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 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.
- 4. Miracle Babies
- Miracle Babies was founded in 2009 by Dr. Sean Daneshmand, a board-certified obstetrician with extensive experience caring for women with high-risk pregnancies, to provide support to families with a baby in the Neonatal Intensive Care Unit. Inspired by his personal experience in the NICU with his daughter Natalie, and having witnessed the struggles that many low-income families face when their baby is admitted to the hospital, Dr. Daneshmand decided to focus the main effort of Miracle Babies on the distribution of direct financial assistance.
- "Miracle Babies knows that when a baby is born premature or with medical complications, that family’s life changes drastically. Stress becomes a near-constant emotion, difficult decisions must be made, and life in the NICU becomes a reality.
- This unexpected journey is one that no parent hopes to experience, and often times, something that many families are unprepared for financially. Miracle Babies' founding purpose is to support these NICU families by providing need-based financial assistance to low-income families through our Family Assistance Program. By helping to address some of the financial barriers that keep parents away from their new baby (transportation, groceries, and childcare costs), we help moms, and dads get to and from the NICU more often, increasing rates of breastfeeding and Kangaroo Care, a skin-to-skin practice.
- In addition to our direct financial assistance program, we also support NICU families through the distribution of MB Cares Bags. These bags are distributed on a monthly basis to hospitals throughout the county of San Diego and contain items designed to support families during their NICU stays.
- Miracle Babies also recognizes the importance of research, in decreasing future preterm births, and works closely with multiple community partners to advance the collective understanding of preterm delivery, and design interventions that result in better health outcomes for NICU babies."
- 5. Project Sweet Peas
"Project Sweet Peas is run by a wonderful group of volunteers, who through personal experience have become passionate about providing support to families of premature or sick infants and to those who have been affected by pregnancy and infant loss."
"Project Sweet Peas acknowledges the importance of parental involvement in caregiving and decision-making in the neonatal intensive care unit (NICU) and seeks to promote family-centered care (FCC) competencies in hospitals nationwide. Care packages, hospital events, peer-to-peer support, financial aid, educational materials, and other Project Sweet Peas services, support the cultural, spiritual, emotional, and financial needs of families as they endure life in the NICU.
Project Sweet Peas makes a lifelong commitment to supporting families experiencing pregnancy and infant loss. In a baby’s last moments, families are encouraged to make cherished memories with custom Project Sweet Peas keepsake items. Healing and remembrance continue to be fostered through programmings such as peer-to-peer support, and our annual candlelight vigil.
Through our services, we give from our hearts, to inspire families with the hope of tomorrow."
- As you can see, there are lovely options for either getting involved or receiving support during your preemie journey. We hope you will reach out to one of these great organizations, and feel the LOVE, or give some LOVE because we all know that it will be gratefully received by someone.