By Tara Murray, NFS Program Coordinator
Babies born even just a few weeks too soon can face serious health challenges and are at risk for lifelong disabilities, such as cerebral palsy, lung problems, and vision and hearing loss. Every year, in the United States, 1 in 10 babies is born prematurely. Every year, worldwide, 15 million babies are born prematurely with nearly 1 million dying before their first birthday.
The mission of the March of Dimes is to improve the health of babies by preventing premature birth, birth defects, and infant mortality. The March of Dimes carries out this mission through community services, advocacy, research, education and support.
Every day, the partnership between Fairfax Neonatal Associates, Inova Children’s Hospital and the March of Dimes delivers education and support to NICU families through the March of Dimes NICU Family Support Program (NFS). NFS is celebrating its 11th year providing services for families at Inova Children’s Hospital, and I am honored to serve as Program Coordinator.
Daily communication and collaboration with FNA staff and NICU leadership ensure the successful delivery of comfort, support and education to our NICU families. Despite the harrowing circumstances of a NICU admission, the participation of FNA and Inova in the NFS program provides the opportunity for a positive patient experience in the NICU.
The monthly family calendar of classes and activities is displayed in each room in the NICU with little fanfare. However, these NFS program components are often a lifeline for parents who feel isolated and helpless to help their struggling child. Class offerings on topics including infection prevention and developmental care improve the confidence of parents at the bedside and in communicating with the care team. Social activities are more than simple crafts or free meals, they are opportunities for parents to meet one another, share their story and find comfort and support in their common experience.
John North, MD, Alex Kline, MD, and Lori Richardson, NNP, are just a few members of FNA who generously give of their time every month to teach infection prevention classes to our parents. Having clinical staff conduct these classes emphasizes the importance of the material covered and also highlights the genuine effort to make parents feel included in the care team.
Earlier in 2017, the NFS program decided to improve engagement with Spanish-speaking families in the NICU. I contacted Margarita Jennings, RN, FNA family liaison, to ask if she might be interested in teaching our NICU Orientation class in Spanish once a month. Ms. Jennings kindly agreed to collaborate with NFS. After several weeks of successful attendance, Ms. Jennings began to host class every week and also began teaching the infection prevention class in Spanish. It is my personal observation that once these class were exclusively offered in Spanish, more Spanish speaking families began joining social activities offered.
Another vital commitment to NFS from an FNA provider comes from Margot Ahronovich, MD. She generously serves on our NICU Parent Advisory Council (NPAC). NFS facilitates the monthly NPAC meeting where staff and former NICU parents come together to enhance and safety and quality in the NICU through family involvement in hospital committees and initiatives.
I first became a volunteer with the March of Dimes by serving on the NPAC at Children’s National Medical Center, Washington, D.C. During my second son’s admission to the NICU at Children’s, the NFS program became a life-line for my family. As we adapted our life to the needs of our medically fragile child, the NFS program helped us learn how to access the care team to better educate ourselves about our son’s diagnoses, and in turn be better able to advocate for him. We learned how to support our older son, frightened because baby brother still was not home, and Mommy and Daddy were rarely home together anymore. Most important, in a variety of ways, the March of Dimes showed up for my family every day of our son’s almost 9-month NICU stay. It is my duty and honor to ensure the March of Dimes shows up for all of FNA’s smallest patients.