NICUs, NICU Family Support, and the March of Dimes
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| NICU Family Support Specialist, Albany, NY 2005. |
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| Neonatal Intensive Care Unit, 1965. |
These initiatives led to grants for perinatal training of health professionals and for the prenatal evaluation and care of high-risk pregnancies, culminating in the release of Toward Improving the Outcome of Pregnancy (TIOP) in 1976, calling for a regional system of neonatal intensive care units (NICUs) to care for premature and sick babies.
By the late 1980s, NICUs had incorporated much of the advanced medical technology familiar today, including incubators, radiant heaters, ventilator assistance for immature lungs, surfactant therapy, nitric oxide therapy, sonography, and special formulas for nutrition. NICU hospital staff provide medical, surgical, and nutritional care for gestationally premature infants, newborns of low birth weight, and compromised full-term infants. NICU technology has contributed to the tremendous progress in keeping even extremely premature infants alive and reducing the risks of subsequent health problems. The March of Dimes has helped to fund the start-up, equipment, and life-saving therapies of NICUs through hundreds of research and community grants.
The March of Dimes recognized early on that parents of preemies often experience anxiety, stress, and physical exhaustion during the time a baby is treated in a NICU and afterwards. In 1983, the Foundation helped produce a pamphlet of guidance entitled “Organizing Support Programs for Parents of Premature Infants” in association with Wheelock College in Boston. This was Project Welcome, the first step in an expanding effort of creating parent support groups. Parent interactions were a natural outcome of families sharing experiences and uniting for mutual support during NICU hospitalizations. The March of Dimes has remained committed to mediating the often traumatic NICU experience by providing such support and by facilitating parent-to-parent outreach to reduce anxiety and improve birth outcomes during a time of family crisis.
To formalize the increasing need for family support as the incidence of prematurity continued to rise, the March of Dimes launched its NICU Family Support (NFS) program in three pilot projects in 2001.
April 4, 2011 / David Rose / March of Dimes Archives
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| Neonatal Intensive Care Unit, 1978. |
By the late 1980s, NICUs had incorporated much of the advanced medical technology familiar today, including incubators, radiant heaters, ventilator assistance for immature lungs, surfactant therapy, nitric oxide therapy, sonography, and special formulas for nutrition. NICU hospital staff provide medical, surgical, and nutritional care for gestationally premature infants, newborns of low birth weight, and compromised full-term infants. NICU technology has contributed to the tremendous progress in keeping even extremely premature infants alive and reducing the risks of subsequent health problems. The March of Dimes has helped to fund the start-up, equipment, and life-saving therapies of NICUs through hundreds of research and community grants.
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| Neonatal Intensive Care Unit, 1985. |
The March of Dimes recognized early on that parents of preemies often experience anxiety, stress, and physical exhaustion during the time a baby is treated in a NICU and afterwards. In 1983, the Foundation helped produce a pamphlet of guidance entitled “Organizing Support Programs for Parents of Premature Infants” in association with Wheelock College in Boston. This was Project Welcome, the first step in an expanding effort of creating parent support groups. Parent interactions were a natural outcome of families sharing experiences and uniting for mutual support during NICU hospitalizations. The March of Dimes has remained committed to mediating the often traumatic NICU experience by providing such support and by facilitating parent-to-parent outreach to reduce anxiety and improve birth outcomes during a time of family crisis.
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| NICU, 1990. |
To formalize the increasing need for family support as the incidence of prematurity continued to rise, the March of Dimes launched its NICU Family Support (NFS) program in three pilot projects in 2001.
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| NICU, White Plains, NY 2008. |
The program was successful not only in its immediate goals of providing information and comfort to families in need, but also of strengthening relationships with partner hospitals, benefitting the culture of NICU waiting areas, and enhancing a climate of trust. NICU Family Support is based on a family-centered philosophy of care to provide support to families during NICU hospitalizations and the transition to home.
Implemented by March of Dimes chapters, over 20 hospitals offered this service by 2005, and it was expanded to hospitals in all 50 states, Washington, DC, and Puerto Rico in 2007. At the program's peak, there were over 100 sites in the NICU Family Support network.
The NICU Family Support program is aligned with the March of Dimes Prematurity Campaign to reduce the incidence and impact of premature birth. One in every ten newborns (400,000 per year) is admitted to a NICU for specialized care due to premature birth, birth defect, or other illness. In the program, an experienced NICU Family Support Specialist works with families and hospital staff to educate parents on how to cope with the NICU experience and how to become more involved in a baby’s care during the transition to home.
The NICU Family Support program is aligned with the March of Dimes Prematurity Campaign to reduce the incidence and impact of premature birth. One in every ten newborns (400,000 per year) is admitted to a NICU for specialized care due to premature birth, birth defect, or other illness. In the program, an experienced NICU Family Support Specialist works with families and hospital staff to educate parents on how to cope with the NICU experience and how to become more involved in a baby’s care during the transition to home.
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| NICU Family Support Specialist Rebecca Keunen, Kansas City, Missouri, 2019. |
Parents find strength from educational presentations, discussions, creative activities such as photography, and facilitated contact with other parents. To help alleviate stress, the specialist will explain and encourage kangaroo care (skin-to-skin contact with the infant) in appropriate circumstances to promote bonding between infant and mother.
The March of Dimes also established its Share Your Story website to enable families to connect in an online community, and parent information kits in English and in Spanish are made available on medical terminology, the experience of siblings and grandparents, and sensitive issues such as bereavement.
By 2008, NICU Family Support served over 50,000 families nationwide, and the Foundation introduced an alternative of licensing NFS sites to hospitals where a chapter-managed site was not feasible. Since then, the licensed sites have been developed further by creating experiential, interactive seminars to strengthen staff empathy and improve professional-family communication. NICU Family Support has also created innovative forums for communication and education, including a webinar series, online message boards, and NFS Specialist training.
In 2020, in response to the COVID-19 Global Pandemic, March of Dimes virtualized the program to continue its efforts to provide comfort and support to families in the NICU:
- Virtual Support for NICU Parents with NICU Family Support®: March of Dimes is offering a virtual NICU Family Support (NFS) program with its hospital partners, to provide education and support to NICU parents through a digital platform in hospitals across the country. This ensures families can still receive the support and education they need, while maintaining hospital protocols for infection control. Additionally, we are maintaining our free educational resources for staff within our NFS partner hospitals, which includes a session on caregiver self-care.
- COVID-19 Updates for Moms and Families with the My NICU Baby® App: March of Dimes’ My NICU Baby® app provides information about COVID-19 relevant to families with a child in the NICU. This includes videos on infection control and parent self-care, as well as how to support siblings and options to connect with other NICU families. The app is available at no cost to all NICU families across the nation through the Apple Store and Google Play. More information can be found at: mynicubaby.org
In 2020, March of Dimes also launched a NICU Family Online Education Series – COVID-19. This five-week webinar series shared important information about having a newborn in a Neonatal Intensive Care Unit (NICU) during the COVID-19 pandemic, as families may be facing changes with how they can spend time with their baby. This series was available at no cost to all NICU families across the country and will cover important topics from a baby’s development to preparing to go home, and even self-care for caregivers.
The webinars were offered twice a week throughout the month of May. During each session, a March of Dimes NICU expert covered topics featured in the core curriculum of the NICU Family Support® program to help families understand their important role alongside health care providers, build confidence to advocate for the best care for their baby and feel supported during a stressful time, while taking into account specific concerns given COVID-19.
April 4, 2011 / David Rose / March of Dimes Archives
Updated February 26, 2021 / Chris Lima
