“Is This Mic On?” Improving NICU Quality of Care by Amplifying Black Mothers’ Voices

The murder of George Floyd in May 2020 and subsequent protests against violent acts of racism ignited intense discourse about the existence and effects of racism in the United States. By 2021, the Centers for Disease Control and Prevention declared racism a serious public threat.¹  The 2021 March of Dimes report card further highlighted worsening racialized differences in preterm birth rates.²  Before these events, the American Academy of Pediatrics released a policy statement describing racism’s role as a social determinant of health and delineating its profound impact on the health of children and families.³ 

Dr. Camara Jones defines racism as “a system of structuring opportunity and assigning value on the basis of the social interpretation of how one looks that unfairly disadvantages some individuals and communities, unfairly advantages other individuals and communities, and saps the strength of the whole society through the waste of human resources.”⁴  Through historical and ongoing policies and practices, many systems designed to deliver health care remain susceptible to racial segregation, including NICUs. Moreover, quality of NICU care significantly influences preterm infant morbidity and mortality rates. Black infants more frequently receive care in lower performing NICUs.⁵  Dyads of Black birthing people and their infants also experience disparate NICU care attributable to racism.⁶  Any efforts to mitigate racialized disparities must avoid perpetuating epistemic injustices against Black families that devalue, ignore, and/or silence them. Centering their experiences, however, can produce knowledge essential to effecting antiracist solutions to these untenable problems.

In this issue of Pediatrics, Witt et al analyzed Black mothers’ perspectives regarding the impact of racism on quality of NICU care.⁷  This single-center, qualitative study recruited Black mothers of infants discharged from a level IV NICU in St. Louis, Missouri. The authors reported, “Mothers described many positive experiences in which staff, regardless of race, provided high-quality care.” Nonetheless, several themes and subthemes of structural, institutional, and interpersonal racism emerged that illustrated adverse effects on NICU quality of care.

In describing medical mistrust, 1 participant noted Dr. James Marion Sims’ experimental gynecological surgeries on enslaved Black women without providing anesthesia, a harrowing example of racist medical abuse. As Dr. Kimberly D. Manning, a Black woman physician, previously wrote, “We are not simply untrusting, we remember.”⁸  Beyond such historical horrors, study participants questioned and criticized the currently unfavorable reputation of their hospital within the local Black community, and the hospital’s lack of Black physicians and nurses. They also shared experiences of neglectful treatment by NICU staff toward their infants that exacerbated their medical mistrust.

For Black Americans, this mistrust is not simply a cultural phenomenon. It is repeatedly justified concerns for the physical, psychological, and emotional wounds inflicted by medical practitioners on Black bodies. It includes the ignoring of these harms and the gaslighting of Black people to make them question the validity of their experiences. It is intergenerational trauma causing weathering and increased allostatic load for Black women.⁹  It has become a means to protect others from harm by passing down such stories through generations.

Fortunately, as a critical strength of this study, participants also shared ideas for improving NICU quality of care. They wanted assistance with connecting to other Black parents/families and more Black health care professionals providing care. They emphasized the need for enhanced education and training to increase NICU staff’s cultural intelligence. Participants suggested this might improve how staff communicate with and provide empathetic care to them. The centering of Black mothers’ voices in this study provided a foundation for building NICUs that “ensure all patients and families know they are welcome, that they will be treated with mutual respect, and that high-quality care will be delivered” per the American Academy of Pediatrics’ policy statement.³ 

A crucial warning must accompany interpretations of this study’s results: Black women do not exist as a monolithic group. Experiences with racism vary by geographic location, socioeconomic position, culture, immigration status, sexual orientation, religion, disability status, and other intersectional identities. This necessitates institution-specific evaluations to identify and remove barriers preventing equitable, just, and compassionate care. As Witt et al describe, interventions must also involve other important stakeholders; for example, Black fathers. Partnerships with local community groups, national organizations, and grassroots movements such as the Neonatal Justice Collaborative can disrupt silos that traditionally impede transformative progress.¹⁰  Sustainable change will require actions beyond individual and institutional efforts. Informed advocacy on promising legislation such as the Black Maternal Health Momnibus Act and Providing Urgent Maternal Protections for Nursing Mothers Act represents an immediate engagement opportunity.^11,12 

The mic is on. Black mothers are speaking. Their message is clear. Our actions must change. As Dr. Meridith Merchant admonishes, experiences of Black families are meaningful and measurable outcomes for mitigating the impact of racism in NICUs.¹³  Instituting antiracist policies and practices to dismantle racialized inequities in preterm infant morbidity and mortality rates cannot proceed without the input of patients’ families and communities, appropriately compensated for their time and expertise.