Your Baby Is in the NICU: How Can the March of Dimes Help?

Your Baby Is in the NICU: How Can the March of Dimes Help?

march of dimes logoThe March of Dimes works both domestically and internationally to improve outcomes for babies and their mothers through a number of different programs. Some of the organization’s key efforts include research on premature birth and birth complications, international education, and advocacy for the rights of mothers and their unborn and newborn children. In addition, the March of Dimes maintains a strong community presence with organizations in all 50 states, Puerto Rico, and Washington, DC. The organization also continues to form key partnerships with local healthcare systems and state health programs, while its individual staff members and volunteers work with healthcare providers to identify the pressing needs of mothers and their children and develop programs that will have a positive and measurable impact on the community.

One of the March of Dimes’ major initiatives concerns assisting families of preterm children and infants born with birth defects. In particular, the organization’s neonatal intensive care unit (NICU) Family Support program offers these families comfort and counseling. The program also focuses on training hospital NICU staff to provide better support to these families. Each year, the program serves more than 90,000 families who have a critically ill or premature baby in the NICU.

The Success of the March of Dimes NICU Family Support Program

As of 2014, the NICU Family Support program was active in 133 hospitals across the nation. These programs facilitate a wide range of programs, such as education for families and parent-to-parent support groups, as well as other initiatives designed for sibling, grandparents, and more. The goal of all NICU-related programming is to provide information and extend support while families operate in crisis mode. The programs also provide professional development trainings to hospital staff and focused information for a variety of roles, from nurses to neonatologists. Since it first implemented these programs, the March of Dimes has expanded its staff workshops with both in-person and online options.

The NICU Family Support Program is active in facilities ranging from large academic hospitals to smaller community clinics and freestanding children’s hospitals. Each year, the program conducts more than 6,000 parent education sessions and gives parents more than 35,000 parent care kits. About one-third of program sites reported that policy or practice changes occurred to increase skin-to-skin time in the NICU after the March of Dimes launched the program.

Key NICU Education for Parents and Hospital Employees

NICU
Image courtesy Jonathan D. Anderson | Flickr

At this point, the March of Dimes has standardized education for parents, which consists of five sessions for the core curriculum. Initially, parents learn how to care for their baby while he or she is in the NICU, when families often feel most powerless. Next, parents learn about the proper precautions to take at home to ensure that their child continues to thrive. Subsequent sessions cover kangaroo care and infant nutrition. In the final class, parents learn about how to prevent premature births so that they can carry this information to their pregnant acquaintances or keep it in mind if they choose to have another child. According to preliminary research, more than 80 percent of parents said that their confidence increased after taking the classes, and more than 90 percent reported that they learned something important.

The March of Dimes workshops designed for healthcare workers focus on the tenants of family-centered care. All workshops are conducted by experienced trainers who have themselves completed extensive education in neonatal family-centered care practices. As a bonus, nurses who participate in the program can earn continuing nursing education credit through the American Nurses Credentialing Center. During the workshops, individuals learn how to communicate effectively to parents and other family members and how to facilitate bereavement and boost coping skills. In addition to general information about working with families in crisis, the workshops focus on the needs of short-stay families. Other topics covered include employee burnout, self-care, and skin-to-skin care.

Connecting Parents through the Share Your Story Initiative

The March of Dimes realizes that not all parents have easy access to a hospital with the NICU Family Support Program. Because these parents also need support, the organization started Share Your Story, an online, interactive community for parents who have babies that were born prematurely or with diseases. The community also welcomes families in the NICU and families who have lost a young child. Members of the community collectively post 50,000 stories each year that are viewed by about 75,000 people from countries around the world. By sharing their stories, individuals relieve themselves of an emotional burden while opening themselves up for support from parents who have experienced similar tragedies.

In 2013, the organization relaunched ShareYourStory.org with improved platform technology and better blogging tools, including the ability to post video and photo. Members can also now search profiles and share their stories on social media to connect to even more sources of support. Many families in the NICU have used these tools to contact other people in similar situations and give strength to each other during this stressful time.