On Valentine’s Day 2013, I went into labor 24 weeks into my twin pregnancy. I was more anxious about the rattling car taking me to the hospital, a facility I had picked due to the reputation of its neonatal intensive care unit (NICU), than I was about whether hospital staff would treat me and my sons differently because we are Black. But two recent studies reveal that I should have been warier.
Research in the September issue of Pediatrics determined that an infant’s racial background can affect the treatment they receive in the NICU. Stanford University School of Medicine researchers analyzed more than 18,600 hospital records for California-born babies with a very low birth weight (3.3 pounds or less). Intended to measure performance and care disparity, researchers scored the records on whether the patient received care within standard medical practices and outcomes. The scores indicated that Latino infants and those listed with “other” as an ethnicity were treated the worst. Hospitals with the best patient outcomes treated white patients better, while Blacks received better care in poorer-quality NICUs.
The medical profession, in general, responds to patients of color differently than whites. The assumption that Black people feel less physical pain, medical experiments conducted on slaves, and immigrants being denied medical care or being deported while still in hospital beds are only a few examples of how racial biases have played out inside medical arenas.
The same racial biases are then transferred to babies. Dr. Jochen Profit, associate professor of pediatrics and lead writer for the study, said, “There’s a long history of disparity in health-care delivery, and our study shows that the NICU is really no different. Unconscious social biases that we all have can make their way into the NICU.”
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Some of these biases are based in fact. According to the March of Dimes, Black women are at a greater risk of giving birth early. Nearly 17 percent of Black babies born each year in the United States are born prematurely. But, statistically, Black female infants are more than twice as likely to survive prematurity than white male infants. Male infants tend to have more severe respiratory ailments; therefore, female preemies of any race are likely to do better outside of the womb than her male ethnic counterpart. However, Black female babies do better than any other group of infants born too soon.
Although statistics back up the belief that prematurely born Black babies will do better than white infants in most cases, it is not a guarantee of positive health outcomes. Yet, the aggressiveness in treatment for surviving premature babies of color is proportional to these assumptions. According to the Stanford study, Black infants received less steroid therapy for lung development; did not have timely exams for retinopathy of prematurity, a disease causing the abnormal growth of blood vessels in the eye; weren’t given human breast milk as often; and developed more infections due to careless hospital handling than whites, Latinos, or Asians.
The reasons for these results are complicated: Pervasive hospital-wide problems, individual hospital practices, and regional and socioeconomic demographics were not considered while compiling the results.
The study also does not take into consideration anecdotal responses to care such as the unofficial diagnosis of “wimpy white boy syndrome” (WWBS) used in many hospitals throughout the U.S. Dr. David G. Oelberg, a neonatologist with the Children’s Hospital of The King’s Daughters in Norfolk, Virginia, defines this condition in his Neonatal Intensive Care editorial as “a neonatal white boy with adjusted gestational age of 35-40 weeks who is failing to achieve the developmental landmarks of weaning to an open crib and/or not taking all of his oral feeds as expected.” Mostly, NICU staff will “diagnose” a baby with WWBS if he is failing to improve in the absence of other obvious medical conditions.
“It’s an easy way to explain why white babies don’t do as well,” said Georgia Lee, a former NICU licensed master social worker. She described the term as a catch-all, but noted that physicians shouldn’t use this anecdotal phenomenon—one that is not recognized as an actual medical condition—to stand in for actual diagnostic procedures. “I don’t feel like our doctors would explain it away like that and then not do a test.”
But that’s essentially what happened to the son of Melody Schreiber, a resident of Springfield, Virginia.
Schreiber’s son, born at 29 weeks, was unofficially diagnosed with WWBS. “He actually did really well initially. His APGAR [an assessment of whether a baby will survive done after birth] score was amazing. He looked great. They said he had moderately premature lungs, but otherwise he was doing well.” A week into her son’s stay, doctors discovered a hole in his heart, but stressed that they should be more concerned about his prematurity.
Around 34 weeks, her son’s condition started to decline: He wasn’t able to breastfeed, and he was moved to a more critical section of the NICU and put on oxygen. Schreiber received no answers as to why.
When she voiced her concerns, the doctors became defensive. “Then they started saying, ‘White males mature the slowest.’” She thought the term “wimpy white boy” was funny at the time. But when he still couldn’t take a bottle by 35 weeks, the joke was no longer amusing. Around 38 weeks, a nurse requested that her son see another cardiologist who confirmed the untreated hole in his heart was a more serious problem and causing some of the delays.
Why did Schreiber think it took so long for the hospital to figure this out?
“Absolutely, I think it was because he was white.” The hospital nurses showed so much favoritism in their treatment of her son, Schreiber started to feel paranoid. “They don’t want him to get better. They want to keep him there forever,” she told her husband. “It really started to feel like they weren’t being forthright.”
The question is whether WWBS is a legitimate medical concern or a form of justified bias that ensures white infants get different care. Babies with WWBS who aren’t performing well in terms of health indicators receive more care, which doesn’t guarantee that they will improve. Black preemies are thought to have an easier time in the NICU due to other racialized data and therefore receive less care, creating the potential for long-term consequences.
But there are also different definitions of the term “care.” There is the medical definition: conducting diagnostic tests, administering medicine, and other procedures to ensure a premature baby survives. Compare that to the empathetic form of care given during feedings, while changing diapers, reading to infants inside incubators, or holding or soothing them when they are upset. While Schreiber’s son may not have received perfect medical care due to racial bias, those same prejudices ensured that he did receive sufficient nurturing care.
Where the Stanford study reflects upon the definition tied to standard medical treatment, a late 2016 study of parental satisfaction done at the Children’s Hospital of Philadelphia revealed concerns over the nurturing, more empathetic standard provided to NICU patients. According to that research, “Black parents were most dissatisfied with how nurses supported them, wanting compassionate and respectful communication and nurses that were attentive to their children.” On the other hand, white parents expressed dissatisfaction concerning a lack of education on their child’s progress and inconsistencies in the nursing staff and administration.
Pregnant mothers of color are often racially profiled from the moment they arrive at the hospital. Lorna Harris of Bryans Road, Maryland, said the Washington, D.C., hospital her daughter was seen at after going into preterm labor at 22 weeks treated her poorly. Staff questioned her competence and ability to pay her hospital bills, asking if she knew how expensive it would be for her to keep her baby. Harris had to step in. “Once it was concluded … [that] this woman has dignity, she has pride, she has a family and she comes from something,” the hospital began treating her daughter more respectfully.
Preemie mom Bonita Huggins from Abington, Pennsylvania, noticed that hospital staff began treating her twins differently when she and her husband behaved outside of expected norms for Black parents.
“We were there every single day. We were attentive. I was doing the pumping. We were doing the kangaroo care. We were doing ‘all of the things we were supposed to do.’ I realize that was our privilege and there were a lot of parents, especially Black parents, where you saw their babies sitting there and nobody paying them any attention.”
Schreiber also noticed that staff drew biased conclusions about parents who weren’t as present. “I overheard them talking about moms who don’t show up: ‘Spanish women have so many babies they don’t care if one of them is in the hospital.’”
“I felt like I was taken more seriously because I was perceived as white,” said Abigail Noonan, a biracial mom of twins born at 24 weeks in Fort Lauderdale, Florida. “And I felt that, because I was taken more seriously, he was paid more attention. Because the doctors would listen to me and would actually come over and talk to me, he was cared for more. I became friends with a lot of the nurses, and I don’t know if it’s a Black or white thing, I just know they paid more attention to me than the other moms there.”
All the parents I spoke with expressed the same sentiment: The treatment their family received was more indicative of their socioeconomic status and their ability to take off from work and be present in the NICU than their race. Economic class, however, generally parallels race, leaving babies of color often unattended and unnurtured in the NICU setting.
Speaking of the other Black parents she encountered in the NICU, Huggins said, “I got to know some of them. One couple had no transportation and didn’t live particularly close by. The parents had to go back to work. There was always a reason for it. A good majority of the white parents, you saw in there every day. We became that couple, where you know, ‘They’re different.’”
“I think about this dad who would come in every night after working a shift as a barber,” Noonan said. “His son had been there for a long time, was obviously very sick. He would come there every night, take his son out, hold him. His son didn’t have anything; there were no blankets or toys, just the hospital stuff. No one ever came and talked to him.
“He was obviously doting. He was obviously exhausted and trying really hard in this terrible situation. Young Black guy, and I never saw any nurses or doctors over there with him. And I felt like there were lots of instances like that, where the parents who weren’t as lucky as me and couldn’t be there all of the time. When they were there, they were always alone.”
Racial bias in the NICU can be harmful for all babies, whether it manifests in a lack of urgent medical care, affection for infants who can thrive from human touch, or support for stressed parents or caregivers. Hospitals should be aware that they are not only treating the infants, but also parents.