Introduction
I was honored to speak at such an invigorating conference! The special part about this particular conference is the attendees are all members of an organization called NICU Parent Network (NPN). The members are either all former NICU Parents or families that have experienced a loss.
If you are a current NICU parent and your baby is still in the NICU, you may just be beginning to grasp how supportive and amazing the NICU community is. Many parents who either have had a child in the NICU or who have endured a loss have felt led to pay it forward and create a platform or organization to help other families.
I know for me personally, after our son William was home from the NICU, I felt driven to help other NICU families and I have been blessed to be able to do that in a variety of ways.
On this episode, I spotlighted some incredible resources available for NICU families or bereavement support. The intent is not for you to connect with all of the resources mentioned today, but rather to find the resources that are in sync with the type of information and support that you are looking for. Some of these companies have been around for many years whereas others are fairly new in the Neonatal and bereavement niche. And actually, some of the organizations that I spotlight are considered to be in direct competition with Empowering NICU Parents, but I try to live from the standpoint of abundance rather than the scarcity mindset. And, as I mentioned, you may have a better connection with a different organization more so than us, which is totally fine. My ultimate goal as a former NICU parent, NNP and someone who has endured loss, is for you to find the appropriate support throughout your personal experience and I hope this podcast helps you do just that! So sit back and get ready to become empowered as we review some fantastic NICU and bereavement-based organizations!
Episode Sponsors:
Dr. Brown’s Medical
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Our NICU Roadmap
Our NICU Roadmap is the only NICU journal parents will need. Our journal is a great resource for NICU parents with educational content, answers to many of their questions, a full glossary plus specific areas to document their baby’s progress each day while in the NICU. Our NICU Roadmap equips parents with questions to ask their baby’s care team each day as well as a designated place to keep track of their baby’s weight, lab values, respiratory settings, feedings, and the plan of care each day. Most importantly, Our NICU Roadmap guides parents and empowers them so they can confidently become and remain an active member of their baby’s care team.
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Episode 53
Supportive Organizations for NICU and Bereaved Families
I truly believe that this episode will be so helpful for so many families. Unfortunately, when William was in the NICU, I was not fully aware of some of the supportive organizations and resources available. But, as I mentioned, many of the organizations that I will mention today are fairly new to the arena as well. Just know that our show notes which you can find at empoweringnicuparents.com/episode53 will have detailed information with associated links available, so please do not feel as though you need to quickly write down all of this information from the organizations that I mention today.
Empowering NICU Parents
For me, shortly after William was home from the NICU, I spoke at fundraisers, participated in the family care council at our hospital, and found different ways that I could give back to NICU families. But as time progressed and after I took some additional time to heal from my traumatic pregnancy, William’s delivery, his time in the NICU, and our two losses a couple of years later, I felt driven to do even more! As some of the fogginess cleared and my heart slowly began to heal, I was able to more clearly see and fully embrace the gift of perspective that I had been given. I knew that I needed to use my newly blended personal and professional experiences and give back to other families.
I created Empowering NICU Parents to support, educate, and empower NICU parents and clinicians. In 2020, I started speaking at conferences in attempts to bring more awareness to the importance of developmental care and family-integrated care. We, as William’s parents, feel extremely blessed by all of his successes and to have the ability to see him grow and thrive. I truly believe it is due in part to our daily 3-6 hours of kangaroo care and our consistent involvement in his cares during his NICU stay. I now as a former NICU parent, truly appreciate the importance of parental involvement and engagement! Because of this, I felt driven to create a NICU Journal called Our NICU Roadmap which collaborates my medical background as a NNP and my personal NICU experience as a Parent. The journal includes what I felt was missing when William was in the NICU and it also specifically and strategically guides parents so they feel educated, equipped and are fully empowered to be engaged with their baby and the NICU care team each and every day! We also created NICU Milestone cards and Newborn Holiday Cards to celebrate all of the milestones your baby accomplishes because I know as a NICU parent just how important it is to celebrate every single success, especially in the NICU. I started the Empowering NICU Parents’ Podcast so NICU parents and clinicians had an easily accessible, free resource that covered educational neonatal topics. I strongly believe that with more knowledge and a base of information, parents will feel more empowered to participate in their baby’s care and as an active member of their baby’s care team. We also feature interviews with parents and professionals on our podcast episodes to support families so they know that they are not alone throughout their NICU journey, during the discharge process, and beyond! And, we also created “NICU Mama” “NICU Dad” and “NICU nurse” hats. The proceeds from the hats help current NICU families. Personally, I am proud to be a part of such a positive, pay-it-forward community, so we want NICU parents and nurses to proudly show the world exactly who we are!
We also provide support to bereaved families and help bring awareness to pregnancy and infant loss on our podcast episodes as we know firsthand how difficult it is for parents and families to cope after a loss. My mind is always churning with ideas and ways that we can continue to give back and help other NICU and bereaved families so that absolutely no one feels alone during such a difficult time. You can find a listing of all of our podcast episodes as well as the all of the aforementioned products on our website.
The additional organizations are presented in no particular order. There are so many great organizations, that I was only able to cover a portion of them on this episode.
Bryce’s NICU Project
First up is Bryce’s NICU Project. Bryce’s NICU Project was founded in May 2015. Bryce’s NICU Project was inspired after the founder, Brittany Boet, spent her first Mother’s Day in the NICU with her baby, Bryce. The organization is devoted to showing love, support, and encouragement to parents with babies in the Neonatal Intensive Care Units of their local hospitals. They take particular interest in providing gifts and/or lunches to the parents during the holidays and are striving to have gifts available for parents year round. They believe that it is not the size of the gift but rather the heart behind it that makes such a lasting impact. You can find out more on their website.
Families Blossoming
Families Blossoming was created by a beautiful woman named Gigi that I had the pleasure of meeting at the conference. She endured 4 pregnancy losses before she had her son at 24 weeks’ gestation. After she learned that her son would lose his vision due to complications from his preterm birth, she felt lost and so hurt. But, she said that the fog began to slowly lift after she understood a valuable lesson her son taught her: “The heart sees what the eyes cannot.” She realized that he would see her in his own unique way. Now, through her 3P-focused coaching programs and services, she empowers her clients to uncover their passion, purpose, and presence – a.k.a. your 3Ps! She lives in London, but is able to meet virtually and she is such a joy to be around. Learn more about Families Blossoming on their website.
Family Support Network of Central Carolina
I am blessed to be able to work directly with The Family Support Network of Central Carolina at the hospital where I work. Their mission is to provide support, education, and caring connections to those who have a child with a disability, special healthcare needs or who have experienced a NICU stay. They are able to provide bedside support to all of our current NICU families. All of their NICU Staff members are former NICU moms who have navigated their own NICU journeys and are now able to offer an empathetic ear, support, and resources to families in need. All of their services are completely free and confidential. They also provide baby care items and equipment for families that need assistance, a special keepsake blanket that informs our patients about their services, books for parents to read to their infants, gas vouchers, and a Home Visitor will visit the parents at home for approximately 4-6 months after their NICU discharge to help monitor their baby’s development and connect families with community services.
Additionally, they provide a well-stocked and curated lending library featuring the latest books about having a baby in the NICU and prematurity that our parents are able to check out. They provide parent-to-parent mentors, a sibling orientation program, and they also help connect families of children with complex medical needs to local organizations and available resources. We as an organization and our patients are very lucky to have them. For additional information, check out their website.
Finn & Co.
Finn and Co was founded by Michelle Armstrong after her son Finn was born 8 weeks early. Michelle created Finn the Panda after her NICU journey. Michelle has since handed over the reins of her business to Jayme White, a NICU Mom who I also had the pleasure of meeting at the conference. Finn is a bear that is given to parents of babies in the hospital as a way for them to stay connected, even when they have to be apart. The panda is made from antimicrobial material and has a washable patch that can be worn by the parent to gather their scent then reattached to the panda or place near the infant. The recording device on the bear allows parents or siblings to record their familiar voice for the infant as well. To learn more or see what additional items they offer, head to their website.
GiFT
GiFT’s Destination Home program was developed in 2011 to support families preparing to bring their baby home from the NICU. They provide infant care essentials to ensure that every family referred to Destination Home has a safe sleep environment, car seat, clothes, diapers, bath supplies, feeding supplies, developmental aids, and home safety items. Their vision is to provide a positive impact on the overall health of the community by empowering families to give the best care possible to their fragile newborns. For more information, head to their website.
Graham’s Foundation
Graham’s Foundation was founded by Nicholas Hall. After their twins were born nearly 15 weeks premature, although he had no idea what the future held, he made up his mind that he would use their journey, no matter the outcome, to make a difference, somehow, some way. Unfortunately, they lost their son Graham and created The Graham’s Foundation. Their Preemie Parent Mentor Program focuses on providing peer to peer guidance and support to parents throughout their child’s NICU journey. They have a team of trained parent (and grandparent) volunteers, who have had their own experience with prematurity. Their mentors support parents from the early days in the NICU through the transition home, and also, if they experience a loss. The mentors are available by phone, text, or email or video call.
They also offer preemie parent care packages that are designed for parents of premature babies – with an emphasis placed on providing information and resources that are most helpful while in the NICU and through the transition home. Head to their website to learn more.
Hand to Hold
Kelli Kelley is the founder and CEO of Hand to Hold. After both of her children were born premature and spent time in the NICU, she searched for support groups and online discussions, but there remained a void. She longed for someone to hold her hand and light her way through this difficult journey which is where the peer-to-peer support network for NICU families came to be. Hand to Hold’s mission is to provide personalized support before, during, and after a NICU stay to help ensure all NICU families thrive. At Hand to Hold, they offer support groups that are available in English and Spanish at no cost to NICU parents before, during and after their NICU stay. Their peer mentor coordinator will match you with a peer mentor, a veteran NICU parent who has gone through training and a background check. They also offer free, time-limited counseling services, and educational content on their website. Hand to Hold’s podcast covers a variety of topics including the importance of maternal mental health, self care for NICU parents, how to advocate for your baby in the NICU and beyond, plus many NICU parent stories from moms and dads. Their app connects NICU and bereaved parents with the support they need at all stages of the journey. Additionally, they have a support group, counseling, one-on-one peer support, as well as resources for bereaved families. To see everything they have to offer, head to their website.
Hope for HIE
In 2010, Hope for HIE was created by three parents who started their journey of building a comprehensive organization, with global support, research, and collaboration with clinicians to improve care, communication and connection. Betsy Pilon took over in 2013 and modified the mission statement “To foster hope in families affected by HIE (Hypoxic Ischemic Encephalopathy) through support, education and awareness.”
Today, Hope for HIE is the premiere worldwide organization that connects families, through a comprehensive support network. Their mission is focused on improving the quality of life for children and families impacted by neonatal and pediatric-acquired HIE, a type of brain injury that has a spectrum of outcomes and myriad of ways it may impact a baby or child in their lifetime. They offer support programs for families including social work support, a peer support network, and a worldwide parent support hub for families impacted by HIE. Additionally, they provide sibling support, extended family support and support for families who have endured a loss due to HIE. If your baby has been diagnosed with HIE, I strongly recommend that you reach out to Hope for HIE for support and to utilize all of their great resources available on their website.
I was honored to have Betsy on our Empowering NICU Parents’ Podcast back on our 9th episode: Living Your Best Life with HIE. It is a great episode that highlights all of the available resources Hope for HIE offers.
ICU Baby
ICU baby’s mission is to unite NICU families and provide emotional, financial, and educational support so that babies and families can thrive together. ICU Baby, formerly known as “The NICU Families Fund” was established in 2014 by Elizabeth Simonton and Louis Freeman. I had the pleasure to meet and get to know Elizabeth at the conference. In June of 2015, it officially became ICU baby. ICU baby offers several great programs in the Miami area for families including catered meals and opportunities for support from other families with admitted babies, a tote bag filled with essential NICU items to help parents care for their baby in the hospital, a Parent Mentor program that offers current NICU parents social-emotional support from veteran NICU parents, resources through their NEST Program or NICU Empowerment Support Tools, transportation assistance, foster care kits for foster infants, a reading program that brings ICU baby volunteers into the NICU to read to babies that are not frequently visited by a parent, and their bereavement program offers NICU families a memorial gift and much needed support during their difficult and painful journey.
To see all of the amazing projects ICU Baby is doing as well as learn about volunteer opportunities, head to their website.
Lily’s Hope
The Lily’s Hope Foundation is based out of Allentown Pennsylvania. They support babies, children and their families with unexpected and urgent needs due to premature birth by providing NICU families with essential items since they have been unable to prepare for their child’s early arrival. Ensuring that each “Package of Hope” is assembled with the family’s specific needs is their organization’s top priority. To find out more, head to
Madelyn’s Fund
Madelyn’s Fund was launched in 2016 by Rachel and Andy Lee after they lost their daughter Madelyn in 2015. Their mission is to support infant and pediatric patients in the NICU and their families, as well as those who experience the trauma of loss. They recognize that many NICU families incur unexpected costs including funeral expenses, but they do not always have the necessary means to cover their financial obligations. They honor their daughter’s memory by supporting other NICU families through Madelyn’s Fund.
They currently serve families at two hospitals in downtown Charlotte in the NICU and CVICU by assisting with everyday expenses including transportation costs, lodging, meals, baby supplies, and assisting families so they can maintain the necessary household expenses while they are unable to work. They also assist with funeral expenses for families who experience the tragedy of an infant loss. To learn more about this incredible organization, head to their website.
Mark’s Mission
Mark’s mission was founded by a former NICU mom. Their organization strives to promote family bonding by providing financial assistance and care. In 2022, they set out on a mission to help families overcome financial burdens and social barriers by providing financial support for families who experience hardship so they are able to be with their baby. Their programs and services have expanded and they now provide NICU Care Packages, Financial Assistance, Family Bonding, Sibling Support, Mental Health Support, and Transportation Services to NICU and PICU families in three counties in Northeast Florida. For more information on how you can donate or volunteer, head to their website.
Me Two Books
Me Two Books was founded in 2016 by Ali Dunn, a mom to preemie twins, Me Two Books’ mission is to create products that provide support, encouragement and information for families. After being disappointed in the lack of children’s books about the NICU, Ali decided to write and illustrate her own. Me Two Books’ titles feature preemies/ NICU babies, twins, kids with disabilities, and those not represented by the traditional publishing industry. They also offer some great downloads including coloring sheets! Me Two Books also has a great blog that I was honored to be a part of early in 2022 which you can read HERE. To see everything they have to offer, head to their website
National Perinatal Association (NPA)
The National Perinatal Association’s programs and initiatives bring individuals and organizations together with a shared purpose to give a voice to the needs of pregnant people, infants, their families, and their healthcare providers. They believe they can have a greater positive impact on perinatal care by working together collectively, rather than working alone. Erika Goyer is the Director of Communications for NPA and it was great to see her again, to learn more about each other, and how our personal experiences have definitely changed the trajectory of our lives.
At NPA, their diverse membership is comprised of healthcare professionals, parents, caregivers, educators, and service providers – who are all driven to support and advocate for babies and families who are at-risk. National Perinatal Association brings together people who are interested in perinatal care to share, to listen, and to learn from each other.
For their education piece, they bring together parents and providers to review and evaluate the evidence. Next, they collaborate on interdisciplinary position statements, guidelines, recommendations, and publications that bring the best evidence into everyday practice. National Perinatal Association also hosts conferences, convenes summits, and produces media to share what they’ve learned with their community.
They advocate by partnering with members of their communities who are most in need of advocacy and support. Then they work together to improve outcomes and ensure justice for pregnant people, infants, and families.
The National Perinatal Association does not seek to replicate the work of other researchers, advocates, organizations, or individuals. Their mission is to facilitate interdisciplinary collaboration so that ALL of US can benefit from each other’s experience and expertise – which I love! For more information or to learn about their membership or their 2024 conference, head to their website.
NEC Society
The NEC Society is dedicated to building a world without necrotizing enterocolitis (NEC) through research, advocacy, and education. The organization is patient-led and collaborates with expert clinicians and researchers to better understand, prevent, and treat this devastating neonatal intestinal disease. The NEC Society’s work combines the patient-family perspective with solutions based on the best available scientific evidence.
The NEC Society was launched in January of 2014 by Jennifer Canvasser after her son died from complications of NEC just before his first birthday. Today, patient-families and experts from around the world work together to improve outcomes for the most vulnerable infants at risk of NEC.
The NEC Society intentionally elevates the voices of women, individuals from diverse backgrounds, the LGBTQ+ community, people with disabilities, and marginalized groups, as they bring critical insight and advance the NEC Society’s vision of a world without NEC.
The NEC Society has a Patient and Family Advisory Council as they recognize and value the lived experiences of patients and families in all of their work. They have educational resources for families if your infant was newly diagnosed with NEC as well as resources for bereaved families. If you baby has been diagnosed with NEC and you would like additional information or want to learn how you can get involved, head to their website.
Isn’t it amazing to hear about all of the great organizations that were mostly founded by NICU parents. I love how parents have taken their personal experience, even after a loss and have turned it into something positive to help other families and/or to honor their child. The NICU and bereavement communities are pretty spectacular!
Closing
I really hope that you found this episode helpful! Like I said, I wish I would have known about all of the amazing organizations available for both bereaved and NICU families when William was in the NICU and after our losses. And the best news is that I have just touched the surface on spotlighting these beneficial organizations! There are many more that I will continue to highlight in our upcoming episodes from companies that are new to the scene as well as those that are well-established. As I mentioned, many of these organizations are looking for volunteers, donations, and some have available positions, so I encourage you to reach out to them if you are interested.
I encourage all of the current NICU families who are listening to focus on every small positive step your baby has accomplished thus far and do not be afraid to utilize these available resources now and in the future! For the NICU clinicians listening, I encourage you to share these organizations with your NICU families and donate some of your time and expertise when you can!
I also strongly encourage you to share this episode with anyone who will gain some value from it! Thank you so much for listening! I appreciate all of you!
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