A Call to Action to Fight for Equity and End Necrotizing Enterocolitis Disparities.

Abstract

In the last week I have spent many hours rocking my 20-month-old son as he struggled to breathe while fighting the stridor, cough, and exhaustion of croup. The sweetness of a sleeping little person on my lap assuaged my fatigue as I rocked him. My mind wandered to the list—papers still to write, grants to revise, emails to return, and student projects to review. In the quiet, I thought deeply about the events of the past week: my daughter's high school graduation, university commencement and the graduation of dear PhD students, and attending the international necrotizing enterocolitis (NEC) symposium. In the stillness I remembered an encounter with a family at the 3rd international NEC symposium whose son died from NEC last year. Cash Owen was born at 28.5 weeks weighing 2 lb 12 oz to Shannan and Cassius Finegan. After medical NEC at 2 weeks of age, he recovered and was nearly ready to go home when he became quickly and tragically ill with irreparable NEC at 67 days of age. Urgent surgery wasn't enough to treat his severe, widespread intestinal necrosis and concomitant sepsis. The days before he got sick, the neonatal intensive care unit (NICU) team had told his parents that he had “one foot out of the NICU.” Despite concerns the day before he was diagnosed, Cash's clinical presentation went unrecognized as concerning for NEC. In Shannan's own words, she says that “Cash spent 68 days courageously fighting for us and even though his fight might be over, my fight as his mother will continue.” This special series related to NEC is dedicated to Cash and to his parents, Cassius and Shannan. They represent the reason for fighting for a world without NEC. Necrotizing enterocolitis is a devastating intestinal infection that primarily afflicts very low birth-weight (VLBW, ie <1500 g) infants. Alarmingly, of the nearly 9000 infants that are diagnosed with NEC each year, one-third will die. An infant's chance of developing NEC is directly related to the NICU in which they reside,1,2 which contributes 3-fold higher magnitude of risk compared to gestational age.3 For survivors—particularly of the severest forms of NEC—nearly half will endure long-term complications such as short gut syndrome, months to years of dependence on parenteral nutrition, lengthy hospitalization, multisystem organ failure, and frequent bloodstream infections. Infants treated surgically that survive are also known to suffer from delayed neurodevelopment. This special series on NEC is directed to our NICU nursing audience of Advances in Neonatal Care for 2 primary reasons: 1) to recognize the power of nurses to affect the environments and family context in which NEC develops and 2) to mobilize nursing's moral and professional imperative to reduce racial and ethnic healthcare disparities. Our first urgent call is to NICU nurses to engage in building a world without NEC. Nurses possess the wisdom to recognize that environments of practice affect their ability to provide quality care, and research shows that the clinical contexts of NICU caregiving structurally vary widely.4–7 Underresourced NICUs are more likely to have less supportive nursing professional practice environments, constrained nurse staffing, fewer lactation consultants, less donor human milk available, and lower use of nursing intensive interventions, such as supporting mothers in initiation and sustainment of breastfeeding.8–10 Human milk (HM) provides benefits to fragile infants that exceed the need for nutrition and control inflammation, a primary challenge in ill newborns that is critical to reducing NEC, as well as many other complications of prematurity.11,12 Hallowell and colleagues9 connected poor nursing work environments to lower exposures to HM, which is critically and structurally important because promoting HM feeding is a nursing-intense intervention and mother's milk is the only intervention known to boost a premature infant's immune capacity and reduce systemic inflammation. For each milliliter of maternal HM provided in the first 14 days of life, $534 is estimated to be saved from reduced morbidities.13 The dedication to quality improvement (QI) in an NICU may affect change in HM feeding practices, but while organizations have emerged to facilitate QI, participation in these learning communities comes at a high cost and institutions, which are already strapped financially, may be unwilling or unable to participate. We've noticed marked differences in accessing QI learning communities among underresourced units, particularly in the Southwest and Southeast, which may contribute to regional differences in NICU quality.14 The second urgent call to address NEC in our NICU communities comes from the intolerable disparities seen in the way Black and Hispanic families especially are affected by NEC.15–17 On adjusted analyses, Black and Hispanic infants experienced NEC more often and were 30% to 35% more likely to die.15 Even among infants with medical NEC, who typically survive, Black or Hispanic infants are 50% more likely to die than their White counterparts. Reasons for higher mortality from medical NEC may reflect delayed treatment but isn't clear from the research and more investigation is needed. Gaps in care related to low provision of HM to infants at risk for NEC is even more pronounced for Black infants. Lake and colleagues18 showed that disparities in exposure to HM were particularly prevalent between NICUs serving predominantly White versus predominantly Black families, potentially reflecting differences in NICU care contexts. In the United States, VLBW infants born to Black mothers are significantly less likely to receive any HM compared to non-Black infants.19 In a study of 1034 extremely low birth-weight infants cared for in 19 US NICUs, 64% of Black infants received HM compared to 84% of non-Black infants.20 Similar disparities in the rates of HM feedings between Black and non-Black populations have been reported elsewhere.21,22 Clearly, addressing NEC prevention and effective treatment is a significant part of reducing these unacceptable disparities that have such potential to do grave harm to Black and Hispanic infants and their families. We present this laundry list of statistics to highlight the need for equity in NICU care contexts. We are often told that we need these statistics to highlight the significance of NEC as a problem in our neonatal community, but for us, the story of one more baby, one more family, whose lives are forever changed by this disease is significant enough to keep fighting. The next step in our fight for a world without NEC is to present this special series in Advances in Neonatal Care. Our goal is to shift knowledge, attitudes, and beliefs about NEC by presenting cutting-edge science and clinical improvement stories to birth a new vision of what can be done—today—to fight the good fight on behalf of fragile infants and their families. Our goal is to ultimately help to answer the question of what neonatal clinicians, especially nurses and nurse practitioners, need to know about NEC to provide better care to every infant, every time and everywhere. All high-risk infants who traverse the environment of the NICU deserve this best evidence-based care available. Over the next 2 issues of Advances in Neonatal Care, authors address topics from prevention and pathogenesis to interventions, diagnostics, and QI. Cohen and colleagues23 demonstrate that making donor HM available across 14 NICUs in New Jersey decreased NEC incidence by half. Andrews and Coe24 describe the multifactorial pathogenesis of NEC and features of the clinical presentation to watch out for as one cares for infants at risk. Killion25 examines the evidence base for feeding practices that withhold feeding around transfusions, concluding that higher quality research with larger samples is needed. This has been a topic of controversy for over a decade, and nursing research could dramatically support improvements in this area. To highlight innovations in diagnostics, Chan and colleagues demonstrate the use of abdominal ultrasound to inform NEC diagnosis, offering many helpful images to detect NEC. Upcoming articles will also examine the effect of intense QI to reduce NEC, showing successes are reliant on adapting processes and structures to sustain prevention efforts (eg, prioritizing HM feeding, adopting standardized feeding protocols, stewarding antibiotics, avoiding antacids, and in some cases, adopting donor-HM-derived fortifiers). Despite a great deal of activity in the scientific community in recent years to expose NEC pathogenesis, clinical research is especially needed to ask relevant questions and implement interventions to foster NICU care equity to reduce NEC disparities. Nurses have keen insights on what it takes to implement meaningful changes and study their impact in the fight to end NEC disparities. We call the neonatal community together to take up the fight to build a world without NEC—to do so we must address disparities and do it now. We do this work to support you in your fight. Sheila M. Gephart, PhD, RN, FAAN Co-Guest Editor, NEC Special Series, Advances in Neonatal Care Megan Quinn, PhD, RN Co-Guest Editor, NEC Special Series, Advances in Neonatal Care