America's NICUs: Cutting-Edge Care, Unequal Outcomes

Authored by: Josh Chelliah

Art by: Caitlin Sweeney

The United States' neonatal intensive care unit (NICU) represents a global leader in the advanced care of newborns, with highly specialized technology and multidisciplinary teams that have markedly improved survival for babies born extremely premature and/or with medically complex conditions. However, despite these clinical advances, significant challenges remain. Extensive research has made it clear that substantial disparities in outcomes persist across many health systems, indicating unequal quality of care even among highly regarded, top-tier NICUs [1]. Recent research on very preterm infants has shown significant differences in infant mortality outcomes, highlighting opportunities for quality improvement even within an otherwise highly advanced NICU system.

These disparities do not begin at the NICU threshold. The preterm birth rate is 49% higher for Black women than for all other women in the United States, and preterm birth is the leading cause of infant death among Black infants [5]. This elevated risk reflects the cumulative biological toll of chronic stress, racism, and structural disadvantage experienced well before delivery, meaning that by the time a Black infant arrives in a NICU, the inequity is already compounded. Understanding NICU disparities thus requires situating them within a broader continuum of maternal and social inequity.

Moreover, structural inequities persist within the U.S. NICU landscape, where racial and ethnic disparities in care delivery and outcomes disproportionately disadvantage Black and Hispanic infants. Research demonstrates that minority infants are more likely to receive care in lower quality NICUs and may experience worse outcomes than white infants born in the same hospital, just minutes apart [2]. These patterns reflect deeper systemic issues of access, segregation, and quality disparities.

Even when clinical capabilities are similar on paper, outcomes can diverge because NICU quality is not evenly distributed across the health system. National data show meaningful variation in performance across hospitals and health systems caring for very preterm infants, which implies that your ZIP code and where you are born shape survival and morbidity even within the same advanced national NICU infrastructure [1].

A major driver of this pattern is segregation in the site of care. In a large cohort of very low birth weight and very preterm infants in Vermont Oxford Network hospitals, NICUs were measurably segregated by race and ethnicity, and Black infants were concentrated in lower-quality NICUs compared with white infants using a composite quality score. This concentration helps explain why disparities can persist even when individual clinicians provide excellent care, because families are not equally connected to the same level of unit resources, staffing environments, and institutional performance [3].

Disparities also occur within the walls of a single NICU through differences in care processes that should be consistent for all infants. Work using composite quality measurement has documented racial and ethnic differences in quality of NICU care delivery, including gaps in evidence-based processes such as antenatal steroid exposure and receiving breast milk at discharge, as well as differences in complications like healthcare-associated infections [4]. These are not minor details. They are modifiable care processes that influence infection risk, neurodevelopmental outcomes, length of stay, and family stress.

The literature suggests that these inequities reflect a mix of structural and interpersonal mechanisms, including structural factors such as residential segregation, insurance & referral pathways, and resource constraints that can shape staffing ratios, nurse work environments, lactation support, and availability of family-centered services [2]. Interpersonal factors can include failures in communication, inadequate language services, and bias that reduces family engagement and trust, which then affects practices like skin-to-skin care and breastfeeding support [2]. A systematic review of NICU disparities reinforces that inequities show up across structure, process, and outcome measures, most often disadvantaging infants of color. Therefore, we need an approach that emphasizes quality improvement methods that offer a scalable mechanism for closing gaps in care delivery across institutions [5].

Qualitative research sharpens this picture further. A study of Black mothers of preterm infants found that the majority believed racism directly shaped the quality of NICU care their children received, with experiences described at structural, institutional, and interpersonal levels [6]. Mothers reported feeling discouraged from skin-to-skin care, receiving less breastfeeding support, and facing racial bias and stereotyping in routine interactions with staff. These accounts make clear that disparities in care processes are not abstract statistical patterns. They are lived experiences with lasting consequences for infants and families.

Addressing these inequities will require simultaneous action on multiple fronts. Quality improvement collaboratives that bring NICUs together have emerged as a promising vehicle, particularly when safety-net hospitals serving predominantly minority populations are actively included, which enables peer learning and shared accountability across institutions [2]. At the unit level, experts point to the need for racial and cultural concordance in care, expanded interpreter services, robust social work support, and provider training that explicitly addresses implicit bias [7]. Health equity dashboards provide NICUs with race-stratified performance feedback and can motivate change, but must be paired with qualitative insight to address root causes that metrics alone cannot capture. [7].

The U.S NICU system has proven it can sustain lives at the very margins of viability. The remaining challenge is ensuring that no infant is excluded from that capacity by race or zip code. Every gap in breastfeeding support, every delayed referral, every family made to feel unwelcome at the bedside is a failure of care. The science is settled. The disparity is not.

References:

1. Boghossian, N. S., Geraci, M., Edwards, E. M., & Horbar, J. D. (2024). Racial and ethnic differences in outcomes of neonates born at less than 30 weeks' gestation, 2018-2022. JAMA Network Open, 7, e2451707. https://doi.org/10.1001/jamanetworkopen.2024.51707

2. Ravi, D., Iacob, A., & Profit, J. (2021). Unequal care: racial/ethnic disparities in neonatal intensive care delivery. Seminars in Perinatology, 45, 151411. https://doi.org/10.1016/j.semperi.2021.151411

3. Horbar, J. D., Edwards, E. M., Greenberg, L. T., Profit, J., Draper, D., Helkey, D., Lorch, S. A., Lee, H. C., Phibbs, C. S., Rogowski, J., Gould, J. B., & Firebaugh, G. (2019). Racial segregation and inequality in the neonatal intensive care unit for very low-birth-weight and very preterm infants. JAMA Pediatrics, 173(5), 455–461. https://doi.org/10.1001/jamapediatrics.2019.0241

4. Profit, J., Gould, J. B., Bennett, M., Goldstein, B. A., Draper, D., Phibbs, C. S., & Lee, H. C. (2017). Racial/ethnic disparity in NICU quality of care delivery. Pediatrics, 140(3), e20170918. https://doi.org/10.1542/peds.2017-0918

5. Sigurdson, K., Mitchell, B., Liu, J., Morton, C., Gould, J. B., Lee, H. C., Capdarest-Arest, N., & Profit, J. (2019). Racial/ethnic disparities in neonatal intensive care: a systematic review. Pediatrics, 144(2), e20183114. https://doi.org/10.1542/peds.2018-3114

6. Witt, R. E., Malcolm, M., Colvin, B. N., Gill, M. R., Ofori, J., Roy, S., Norwood, S., Crenshaw, E. R., & Riddell, C. A. (2022). Racism and quality of neonatal intensive care: voices of Black mothers. Pediatrics, 150(3), e2022056971. https://doi.org/10.1542/peds.2022-056971

7. Razdan, S., et al. (2023). Disparities and equity dashboards in the neonatal intensive care unit: a qualitative study of expert perspectives [Preprint]. Research Square. https://doi.org/10.21203/rs.3.rs-3002217/v1