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Perspectives on Race and Medicine in the NICU Shannon Y. Adams, BA,a Tanika White Davis,c Beatrice E. Lechner, MDa,b Current data regarding racial and ethnic disparities in health outcomes of abstract newborns requiring care in an NICU reveal significant differences in quality and access to care that disproportionally affects infants of color, particularly African American infants. These inequalities result in an increased infant mortality rate for Black children and higher preterm birth rates, as well as an increase in deaths due to low birth weight and decreased gestational age. Concurrently, there is emerging research exploring the role of diversity and adequate representation among medical providers in patient outcomes in Black communities. In this editorial, we present commentaries from a medical student, a neonatologist, and a parent of former NICU patients to further explore race in the NICU from different perspectives and understand what can be learned from their experiences about these systemic issues and why a Warren Alpert Medical School, Brown University, representation is a critical component of successful change. Providence, Rhode Island; bWomen & Infants Hospital of Rhode Island, Providence, Rhode Island; and cNICU Parent Ms Adams helped to conceptualize and develop this project and was responsible for communicating and According to data from the Centers for New research indicates that coordinating with coauthors as well as drafting, Disease Control and Prevention, in representation, here defined as reviewing, and revising the manuscript; Ms Davis 2018, the infant mortality rate for Black congruency between the racial helped to draft, review, and revise her individual comments; Dr Lechner conceptualized this project children was 10.8 per 1000 live births diversity of providers and their and helped to draft, review, and revise the compared with a rate of 4.6 for non- patients, may be one of these areas of manuscript; and all authors approved the final Hispanic white children.1 Similarly, focus. In a recent study looking at manuscript as submitted and agree to be there is a nearly 50% higher preterm data on hospital births in Florida from accountable for all aspects of the work. birth rate for Black children, as well as 1992 to 2015, researchers found DOI: https://doi.org/10.1542/peds.2020-029025 a fourfold increase in deaths due to low that the mortality penalty suffered Accepted for publication Dec 2, 2020 birth weight and decreased by Black newborns cared for by Black Address correspondence to Shannon Y. Adams, gestational age.2 physicians was reduced by Warren Alpert Medical School, Brown University, Box a factor of 2 when compared G-9999, Providence, RI 02912.E- Unfortunately, race-based inequality with those cared for by white mail: shannon_adams@brown.edu in medicine is all too familiar to physicians. These findings were PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, clinicians today. Over time, the field of consistent when controlling for 1098-4275). pediatrics has taken strides toward training, meaning that a similar Copyright © 2021 by the American Academy of addressing these inequities. However, reduction was found along racial lines Pediatrics it is the systemic nature of racism among both general pediatricians and FINANCIAL DISCLOSURE: The authors have indicated within health care that is the primary neonatologists.4 Similarly, using data they have no financial relationships relevant to this barrier to change.3 Therefore, when collected from a randomized control article to disclose. facing an issue of this magnitude, trial conducted with an adult FUNDING: No external funding. namely, the disparity in outcomes for population, researchers found that POTENTIAL CONFLICT OF INTEREST: The authors have Black infants in America, it is Black men assigned to a racially indicated they have no potential conflicts of interest important to analyze it from different to disclose. concordant doctor sought more perspectives to allow for the preventive care, resulting identification of areas of improvement in a projected 19% reduction in To cite: Adams SY, Davis TW, Lechner BE. Perspectives on Race and Medicine in the that are both tangible and feasible to the Black–white male gap in NICU. Pediatrics. 2021;147(3):e2020029025 address. cardiovascular mortality.5 Downloaded from www.aappublications.org/news by guest on March 12, 2021 PEDIATRICS Volume 147, number 3, March 2021:e2020029025 SPECIAL ARTICLE
We contend that emerging data make best,” I said. “I’d trust these doctors them, their patients can see their the strong case that representation with my family too.” She nodded and neighbors, their families, and among medical providers matters rubbed her husband’s shoulder. As I themselves. By creating a system that when assessing patient outcomes. stepped back again, the brother encourages diversity at the highest Therefore, in this submission, we spoke. “Keep representin’, doc. Make level, with physicians, allied health present comments from a medical us proud.” professionals, and administrators student, a neonatologist, and a parent from every walk of life, we can move of former patients in the NICU to In the NICU, one of my patients was toward promoting equitable care for further explore race and the the child of a young Black mother, all patients, increasing patient importance of adequate with a history of psychiatric satisfaction, and improving health representation in the NICU from diagnoses and a medical file that care outcomes for those who need it different perspectives. labeled her as “argumentative.” While most.7 her son was feeding and growing, she stayed by his side diligently, always thankful and never questioned the BEATRICE LECHNER, MD: SHANNON ADAMS: MEDICAL STUDENT NEONATOLOGIST team. On one of my night call shifts, I As a student-doctor buried within the saw the light on in his room and came Many years ago, I cared for an infant hierarchy of medicine, one can often to sit with them while she fed him. in the NICU whose mother I feel small, with everything you do “How are you doing, Mom?” I asked immediately bonded with. We shared filtered through the countless levels her. She held him closer. “As long as key life experiences, both juggling the above you so that your role is not he’s good, I’m good. Are you studying roles of wife, mother, and professional always clear or meaningful. I to be one of those doctors?” I nodded. at the beginning of our respective experienced this many times in my “Hopefully one day.” She pulled down careers. I saw myself in the way she 4 years; however, as a Black woman, her mask to look at me, fully. “Good approached having a sick infant in the there are some interactions in which I for you, girl. Good for you. There NICU by being at the bedside around saw genuine value in my presence. needs to be more of Us in here the clock, asking detailed questions The first was in the PICU with an 8- anyway.” about the science behind our year-old girl recovering from a severe treatment plan, gathering her asthma exacerbation. On my final trip As a medical student, I have seen that extended family around her for to her room, her grandmother looked the connection between doctors and support, and remaining optimistic. down and nudged her. “Tell her,” she some of their patients is warped; Thus, I experienced our relationship said, “Don’t be shy.” The girl giggled irrevocably fractured by the actions of as a collaborative, trusting physician- and ducked behind her a broken system that has operated as parent partnership: that is, until the grandmother’s shoulder shaking her both a stopgap between life and death day her infant unexpectedly became head. “What?” I asked, “You can tell and a facilitator of morbidity and gravely ill. Overnight our dynamic me.” She peeked between her braids trauma. Black Americans have not changed. There was less warmth in to look at me. “When I grow up, I forgotten the atrocities committed the room and more questions that felt want to be a doctor like you.” I against those who came before them: like questioning. Suddenly, I was laughed and bent down on one knee. the untreated victims of Tuskegee, the struggling not only with my attempts “Girls like you and me can grow up to generations lost to forced sterilization to save the infant’s life but also with be whatever we want to be.” and eugenics, the family of Henrietta an unexpected and confusing fracture Lacks, and the experimental subjects in our relationship. Another moment came in the of Dr James Marion Sims.6 Their emergency department. I stood suffering reverberates through the At the time, I attributed this shift to behind the attending and resident as hearts and minds of an entire racial the family’s stress of having a very they told the family what to expect. identity, a group of people who have sick infant. Although I will never When they were through, we turned been given many reasons to doubt know what this particular family was to file out of the room, but as I our oath to do them no harm. But thinking or feeling, looking back, I can reached to close the curtain, the when I knelt beside that girl, spoke to say this: something had broken their patient’s wife spoke. “Tell me that family, and sat across from that trust in us. In hindsight, after many something. How are these doctors mother in the NICU, I could feel the years of reading and learning, I have over here? Are they any good? Do you gap closing between us and them. tried to place their experience within trust them?” I looked up at the ring of the broader social context. They were brown faces standing proudly around For me, “representation” means an African American family, I was the hospital bed, like soldiers sworn a cohort of physicians who mirror the a white neonatologist; in fact, no one to defend and protect. “They’re the communities they serve, so that in on the care team was Black. As I Downloaded from www.aappublications.org/news by guest on March 12, 2021 2 ADAMS et al
would later appreciate, our Over the course of the ensuing years, to be likable. I needed the nearly all- relationship as doctor and patient caring for and learning from families white staff to know I was smart and came to be as a part of a long, sordid of marginalized communities, I began friendly and gracious and involved. I history between African Americans to more deeply understand the need needed them to know I was educated. and medicine. Within the power for culturally sensitive care from all I was employed. I was married. So structure that exists between providers. But I also realized that badly did I crave their help, I providers and patients, as well as the although the ability to be sympathetic consciously played the role of record of wrongdoings perpetrated as a physician is critical, the ability to “respectable Black woman.” And I by others in white coats, our be empathetic is priceless. In the played to win. I remember feeling relationship was understandably America of today, one of the pillars of that I had to be strong, so that they complex before I had even entered good medicine has become the would know I was capable, but not so the room. And when their infant development of a health care strong as to come off as angry. I didn’t suffered a complication, with no one workforce that reflects the want to seem overly emotional, for else around who looked like them, community it serves. Our attending fear that that kind of expression they were given yet another reason to physicians, interns, residents, medical would loom too large and second-guess the system. students, nurses, department chairs, overshadow, in their eyes, my and all of the people in between need intelligence and capability of There is substantial research to be as diverse as the landscape of processing information about my exploring medical mistrust in our nation. To best treat our patients, children’s health and well-being. So, I minority communities and the impact we need to build teams of people who saved my tears for my husband at it has on usage of health care have walked in a family’s shoes, home and sobbed in the car in the resources, adherence to treatment grown up in their neighborhoods, and hospital parking lot. regimens and screening protocols, shared in their challenges. Increasing I later learned that I was not alone in belief in expert recommendations, the diversity of the medical field will provider interactions, and ultimately my worries. My aunt shared with me not only help to decrease the African that when her son was born with patient outcomes.8–12 These data American neonatal mortality rate but a genetic disorder, a NICU nurse who reveal that the historical treatment of will also facilitate the development of was a woman of color pulled her Black Americans by our civic systems a workforce that can provide aside and gave her two pieces of has had a lasting effect on the exceptional care to all vulnerable advice. The first bit was crucial: “Your relationship between some members populations. baby will need all your strength,” she of these groups and their sources of told her. “Whatever you have in you, medical care and wellness. This is an alarming reality we must confront as TANIKA DAVIS: NICU PARENT you bring it!” The second bit of advice, however, was this: “Don’t let providers. As the daughter of The infants were born too small. them see you cry. You can cry with immigrants, I have always drawn on Their tininess cobirthed a kind of love me, but don’t let them see you cry.” my experiences growing up in and fierce protectiveness I never The “them” in that sentence was clear multiple cultures around the world knew existed. It also frightened me to to my aunt and to me when she and prided myself on my ability to my core. recounted the story: the white slip into various parental How then can I express my profound doctors and nurses. perspectives in an effort to achieve gratitude for the NICU staff who therapeutic human connections. Anthropological analysis reveals warmly and assuredly cared for my Although I was humble enough to that the importance of projecting an boys? I cannot say enough good realize that my technique had image of strength is deeply things, except that I could not have significant limits, I was nonetheless engrained in the Black female survived without those angels in proud of my perceived wide horizon. psyche.13 Like my aunt, many of us colorful scrubs. I think of them so And yet in this case, I didn’t think are taught from a young age to fondly that I sometimes forget how about the parts of this family’s appear resilient and self-sufficient, much internal stress I was under. I so personal narrative and identity that often to the detriment of our own desperately wanted my infants to be may have played a role in how they needs and psychological well-being. safe and healthy that I trusted nearly experienced the NICU. I didn’t think As psychologist Regina Romero anyone who said they knew best how about how their trust in me, despite wrote in the book Psychotherapy to guarantee such an outcome. all of my hard work, long hours, with African American women: attention to detail, and dedication to But I knew that it is human nature to Innovations in Psychodynamic the practice of evidenced-based help people who you like, so every Perspective and Practice, “‘Strong medicine, was not guaranteed. day I entered the ward, I did my best Black Woman’…is a mantra for so Downloaded from www.aappublications.org/news by guest on March 12, 2021 PEDIATRICS Volume 147, number 3, March 2021 3
much a part of US culture that it is time in the NICU, I will pray that she Given the data presented here, we seldom realized how great a toll it is part of a health care system with an contend that the medical field must has taken on the emotional well- arc that is bent toward equality. I will work toward achieving a minimum being of the African American tell her, “Your baby will need all your Black physician workforce of 10% woman.”14 And yet, at the same time, strength. Whatever you have in you, within the next 5 to 7 years. There are we are faced with stereotypes that you bring it!” And I will also tell her 3 identifiable points along the depict us as “too strong.” We are this: “Cry. Cry all you want, whenever education time line at which we can “angry,” “domineering,” “loud,” you want. Let them see your begin to tackle this issue. “disagreeable,” or overly assertive fierceness, baby girl. Let them see The first is in early education, in situations in which it is deemed your tears.” specifically the elementary, middle, unwarranted.15,16 So, although to and high school levels. This is the some the fear of being judged as time when a career in medicine a parent in the NICU may seem like DISCUSSION initially becomes a viable possibility a universal experience (and in many Year after year, hundreds of for children. Medical schools and ways they would be right), as a Black thousands of Americans continue to hospitals, particularly those in areas parent and specifically a Black show the world that they want Black that serve a large minority mother, I am keenly aware that there lives to matter, and with each community, must either put forth are stereotypes unique to my iteration of the movement, our nation initiatives that directly engage young identity that hold historically feels the discomfort that comes with people of color or partner with local negative connotations and have monumental but necessary change. organizations that are working in this a well-documented impact on our Discussions about race and racism space. Some examples include medical care.17 Research reveals that are made difficult by the enormity of STEMcx (Science, Technology, my background and upward it, coupled with its immateriality and Engineering and Mathematics socioeconomic mobility alone are not the subtle complexities of human Conference and Expo), an enough to protect me or my children interaction. However, as these essays organization based in Baltimore from the adverse birth outcomes reveal, the road to progress is lined “committed to putting non-traditional experienced by Black women for by a diversity of thought, experience, students into the STEM jobs of the generations.18 So although no one and identity among those in power. In future through exposure, mentoring explicitly advised me to repress my short, increasing the presence of and giving these students a chance to natural emotions, somehow it felt traditionally underrepresented see someone who looks like them that the doctors and nurses would be minority groups in the physician achieving.”23 Similarly, Black Men in incapable of handling my tears, workforce can help to address the White Coats brings students together incapable of seeing me, a Black issues of structural racism in for youth summit events hosted at woman, fully. And if they could not medicine and, maybe, help to medical centers around the country. see me fully, then they would not see decrease Black newborn mortality As one parent said when interviewed my infants fully, which was an as well. at their 2019 event, “I think it’s good outcome I could not allow. So, I made to see the representation, to see sure to form my Rs clearly at the end Currently, Black or African American someone that looks like them who of words. I smiled when I was people make up 13.4% of the US has gone through the career pathway, exhausted. I was the “right” kind population.19 According to data from so that way, they know that it’s very of Black NICU mother, and my boys the US Census Bureau, the size of feasible. That it’s very possible for came home with me safe and racial minority groups is only them.”24 sound. increasing. Between 2010 and 2019, racial and ethnic minorities The second point is at the medical Today, 10 years later, my feeders and accounted for all of the nation’s school admissions level. In the growers are long-limbed and population growth, with an 8.5% 2020–2021 academic year, 7.5% of ravenous. They make me laugh until increase in the Black community the total US medical school my sides hurt. I remain immensely alone.20 However, according to the enrollment was Black or African grateful for their care team’s Association of American Medical American, compared with 7.2%, 7.0%, expertise and the combination of Colleges, among active physicians, and 6.8% in the preceding academic professionalism and ministry that only 5% identify as African American, years.25 This must continue to trend made them so good at tending to the with ,3% identifying as Black in a positive direction. Residency tiniest and neediest of humans. But if men.21,22 This is problematic. admissions data should also mirror my daughter, born 2 years after the Nevertheless, it allows us to isolate an this trajectory, indicating that Black twins, ever has an infant who needs area of critical need. medical students are supported Downloaded from www.aappublications.org/news by guest on March 12, 2021 4 ADAMS et al
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Perspectives on Race and Medicine in the NICU Shannon Y. Adams, Tanika White Davis and Beatrice E. Lechner Pediatrics originally published online February 16, 2021; Updated Information & including high resolution figures, can be found at: Services http://pediatrics.aappublications.org/content/early/2021/02/12/peds.2 020-029025 References This article cites 15 articles, 1 of which you can access for free at: http://pediatrics.aappublications.org/content/early/2021/02/12/peds.2 020-029025#BIBL Subspecialty Collections This article, along with others on similar topics, appears in the following collection(s): Neonatology http://www.aappublications.org/cgi/collection/neonatology_sub Permissions & Licensing Information about reproducing this article in parts (figures, tables) or in its entirety can be found online at: http://www.aappublications.org/site/misc/Permissions.xhtml Reprints Information about ordering reprints can be found online: http://www.aappublications.org/site/misc/reprints.xhtml Downloaded from www.aappublications.org/news by guest on March 12, 2021
Perspectives on Race and Medicine in the NICU Shannon Y. Adams, Tanika White Davis and Beatrice E. Lechner Pediatrics originally published online February 16, 2021; The online version of this article, along with updated information and services, is located on the World Wide Web at: http://pediatrics.aappublications.org/content/early/2021/02/12/peds.2020-029025 Pediatrics is the official journal of the American Academy of Pediatrics. A monthly publication, it has been published continuously since 1948. Pediatrics is owned, published, and trademarked by the American Academy of Pediatrics, 345 Park Avenue, Itasca, Illinois, 60143. Copyright © 2021 by the American Academy of Pediatrics. All rights reserved. Print ISSN: 1073-0397. Downloaded from www.aappublications.org/news by guest on March 12, 2021
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