7: “Growing up, Babies Died.”

Black infants die at twice the rate as white infants. Black mothers are 2-3 times more likely to die. Pioneering researchers Dr. Keisha Bentley-Edwards and Dr. Ebony Jade Hilton explain the causes of this lethal gap, and what can be done to close it.

Transcript

Dr. Ebony Hilton  00:06

One Christmas we were driving from church and my little sister who at that time was six years old, five or six years old, asked my mom whether or not we can have a brother. Like baby Jesus. And it was at that time that my mom told us that we actually did have a brother. He unfortunately lived for three days before passing away, he pretty much was kind of laid to rest, faceless, nameless.

Dr. Keisha Bentley-Edwards  00:33

I was never, I never really saw pregnancy as a time of health and vibrancy. It was a scary time where people could get very sick. It was a scary time when it came to infants and whether or not you were going to have a memorial service for an infant who died in the hospital. And that was something that I just remember occurring and it was sad, but I didn’t really think of it as being unusual because I had friends who had similar experiences. So growing up, babies died.

Serena Williams  01:06

I was starting a Grand Slam and I was pregnant. Like how am I going to get through this? I told the nurse I can’t breathe I need to I need, I need a mask. So I put the oxygen mask on and I started coughing because I couldn’t breathe. It hurt so bad, hurt so bad. So they were doing all these different tests. Everything was negative. Like, listen, I need you to run a CAT scan with dye, because I have a pulmonary embolism in my lungs. I know it. I know it. I’ve had this before. I know my body.

Alexis Ohanian  01:49

She was undoubtedly battling for her life and I was terrified that she might die.

Jill Smoller  01:56

Fortunately, because she advocated for herself, they ended up taking her for a CAT scan and they found the pulmonary embolism.

Osha Davidson  02:14

I’m Osha Gray Davidson, producer and host of the American project. A racial health gap separating Black and white communities existed long before COVID-19 began disproportionately killing the descendants of enslaved Americans. Nowhere is this gap more pronounced, nor more heartbreaking, than in that most basic process of human existence: birth. That’s the subject of this episode of The American Project: “Growing Up Babies Died,” a look at maternal death and infant mortality.

Serena Williams with daughter Alexis Olympia Ohanian

Osha Davidson  02:55

In our opening clips, you heard tennis great, Serena Williams. Williams, who’s been called America’s greatest athlete, almost died from complications after giving birth to a baby girl in 2017.

Before Williams, you heard from our two guests. Both are pioneering researchers in this field.

Dr. Ebony Jade Hilton

Dr. Ebony Jade Hilton is an anesthesiologist at the University of Virginia Charlottesville. Hilton was the first African American woman to be hired by the Medical University of South Carolina since it opened in 1824.

Dr. Keisha Bentley-Edwards is an assistant professor of general internal medicine at Duke University, where she also directs the Health Equity Working Group for the Samuel Dubois Cook Center on Social Equity. She’s currently the principal investigator for the five-year $2.7 million study on race and health funded by the NIH. Let’s start with Dr. Bentley-Edwards. We spoke last October in Durham, North Carolina, Bentley-Edwards began by describing the context of birth in the African American community where she grew up in California. But the grim reality she describes applies to Black communities pretty much anywhere in the United States then and now.

Dr. Keisha Bentley-Edwards  04:12

As an African American family. I didn’t realize there were certain things I didn’t realize in my childhood that were unusual when it came to the national scene versus the African American health in particular. So, growing up, babies died. But I just remember as a kid, that it was a sadness, but it was somewhat normal occurrence where people were on bed-rest when they were pregnant. They were, I was never, I never really saw pregnancy as a time of health and vibrancy. It was a scary time where people could get very sick. It was a scary time when it came to infants and having, whether or not you were going to have a memorial service for an infant who died in the hospital. And that was something that I just remember occurring. And it was sad, but I didn’t really think of it as being unusual because I had friends who had similar experiences. So when I got to college, and I started taking health classes was when I really saw the statistics around infant mortality. And I realized that for African American women that they are, they roughly have double the infant mortality rate, then what is the national average and more specifically, in comparison to white women. It would make me mad. And so although this area is not my primary area of study, I’m a developmental psychologist, I still study women and Black women and families and race and gender. So it’s still an issue that I’m seeing. So it becomes personal in how we define what’s normal. Because these disparities have remained consistent at about double for about 30 years, at least 30 years, it’s been about double what the national rate is. So something new has to happen. And that’s really what I have been making my charge more recently, is to say, what are we going to do differently? Because what we’re doing right now, and what we have been doing, it’s just not working.

Osha Davidson  06:29

And how do these numbers compare for Black infants in the US compared to infants internationally?

Dr. Keisha Bentley-Edwards  06:35

So, so we talk about, in general in the US, the numbers are pretty high for a developed country. But if you were to look at Black women specifically, it’s fairly high just in general. So our numbers are more like Libya.

Osha Davidson  07:08

In 2017, the US had an infant mortality rate of 5.8 deaths per 1,000 live births, meaning babies who were born and took their first breath. Keep in mind these numbers don’t include miscarriages or stillbirths. So an infant mortality rate, or IMR, of 5.8 for the US. For US whites only the IMR is 4.7. for Blacks, the IMR is 10.9. Of course, like everything else, IMRs vary widely from state to state. The worst state for Black babies is not in the South, as many might assume. It’s Wisconsin, which has an IMR of 15.9 for Blacks. Things are much better for white babies in Wisconsin. In fact, the IMR for them especially Better than the US average, with 4.4 deaths per 1,000 live births. Wisconsin’s IMR for white babies is the same as New Zealand’s. Despite these variations, one fact remains constant across America, the Black infant mortality rate is worse than the US average in every state. The toll is startling. Annually, the number of excess Black infant deaths in America is 3,600. That’s the number of Black babies who die each year solely as a result of the race gap. To put that number in perspective, it’s 600 more deaths than the total number of victims who died in the 9/11 attacks. Three thousand six-hundred deaths every year. What accounts for the Black white disparity in infant mortality in the United States? If you listened to Episode Six, you know that the hunt for genetic differences between races has a long and sordid history, including the infamous Tuskegee experiment. So it shouldn’t be any surprise that that’s where researchers into infant mortality first looked. Dr. Bentley Edwards:

Dr. Keisha Bentley-Edwards  09:11

But folks for a while were looking at the genetics. But there are no real genetic explanation.

Osha Davidson  09:17

That’s because race is a social construct, not a biological one. One finding of the Human Genome Project was that genetic variations within so-called “races” far exceeds any variations between them. Let’s bring Dr Ebony Hilton into the conversation.

Dr. Ebony Hilton  09:35

When we’re looking at infant mortality, when you’re talking about life and death, there’s so many different factors that circle into that, that realm, and I always like to think of it in three different circles. One is the individual component. So that’s what’s your genetic makeup. You know, whether or not you drink, smoke. The second component is your community. So literally, where do you live, we know that your zip code is sometimes a more of a determinant of your outcome than your genetic code. So in your community is there a toxic industry that spewing pollution into your air and water? So do you live in a food desert where there’s not a grocery store? Some healthy form of produce that you can walk to? In your community, do you even have sidewalks? Many people may think like, “Oh, that’s something weird to think about.” But some communities literally don’t have sidewalks that they can entertain a healthy active lifestyle. So that’s community aspect, and whether or not you even have a hospital in your community or like a South Carolina for instance, one in every five counties don’t have a hospital, but what is that impact. And then a third aspect of that is literally the healthcare system itself. In the healthcare system, we know that implicit and explicit bias exists. We know that providers, we are humans that at our at our core, that’s all we are and we all have a tendency, we all have a bias. The question is Does your bias impact the way you’re actually treating people? And so, so yeah, so what influence is it when a Black person or white person walks in your door? Do you listen to this person versus that person? Do you perform interventions for that person versus this person? And how does that, those three components, the individual component, the community component, the healthcare system component? How do all three of those overlap to determine whether or not this person is going to live or die? That’s what we have to tackle.

Osha Davidson  11:35

Let’s go back to Dr. Bentley Edwards for a moment to look at what Dr. Hilton described as the first component: individual behavior. I asked Bentley Edwards about the specific risk factors based on individual choices by pregnant mothers that are known to be linked to infant mortality and if they can explain the racial gap, and IMR.

Osha Davidson  11:58

Okay, so I’m going to go through a list, a short list of risk factors that are traditionally used to explain infant mortality rates, and can you just answer yes or no whether these are, these accounts for the difference.

Dr. Keisha Bentley-Edwards  12:14

 Yes.

Osha Davidson  12:15

Obesity.

Dr. Keisha Bentley-Edwards  12:16

It has a significant influence, but it doesn’t account for the disparities.

Osha Davidson  12:21

Smoking.

Dr. Keisha Bentley-Edwards  12:22

Smoking actually, white women who smoke more than Black women in general, but particularly pregnancy, the risk of smoking while pregnant is much higher for white women than for Black women. So if anything that should reduce the disparity, but it doesn’t. Black women in smoking in pregnancy is not a significant issue.

Osha Davidson  12:44

Alcohol.

Dr. Keisha Bentley-Edwards  12:45

Alcohol, Black women do have a slightly higher rate of drinking alcohol while pregnant, but the overall numbers are very small.

Osha Davidson  12:55

Drug use.

Dr. Keisha Bentley-Edwards  12:56

Drug use. Black women also have a statistically significant higher rates of drug use than white women. However, when you look at the actual numbers, those numbers are very small.

Osha Davidson  13:08

Poverty.

Dr. Keisha Bentley-Edwards  13:09

Now poverty does have an influence. However, when you look at similarly situated Black women and similarly situated white women, whether it’s looking at…when you’re looking at impoverished Black women and impoverished white women, Black women’s numbers are still much worse than their counterparts. But when you look at a highly educated or higher income, those who have a higher social status, who are Black and white women, the gap is actually bigger for those Black women who have a higher socioeconomic status than their white, higher socioeconomic status counterparts.

Osha Davidson  13:48

So none of these behaviors that have traditionally been used to explain infant mortality rate explains the gap between white and Black infant mortality rates.

Dr. Keisha Bentley-Edwards  13:59

Exactly. They’re contributors, but they they’re not big enough contributors where it can…where it’s causing the numbers that we’re seeing.

Osha Davidson  14:07

Just to emphasize the point. There’s nothing pregnant Black women are doing that explains why so many of their babies are dying when white babies are living. I stress that fact because there’s a tendency to pathologize Black behavior when talking about racial gaps. One known risk factor in pregnancy is the mother’s age.

Dr. Ebony Hilton  14:28

So oftentimes, we think about this optimal age of being between 25 and 34, as being this ideal time, as far as your health to have a baby and even for your own personal…what we think about being a bit more stable. So for white women, what you find is a lovely downward slope, which makes you feel like it’s very controllable. So it’s very high when the infant mortality rates are high when you have teenage mothers or people will have who either don’t have a high school diploma, or they’re having their children young before they can get a high school diploma. But as you get more education, those numbers slope down. And once you get into Bachelor’s and Master’s and PhD, it gets to almost nothing. Which is wonderful. We actually don’t want babies to die. So our goal is not for the infant mortality rate for white women to increase. But what we would like is for it to decrease in Black women so for Black women, you do see a high risk and high school, in those who are who have some college but did not graduate. But when you start looking at the bachelors and particularly those who have a PhD, their numbers are much higher than what you see in general. But also in the gap between white women and Black women actually expands as you look at education. So the numbers for Black women with a bachelor’s degree is much higher than white women who dropped out of high school. So just to say that, again, is that a Black woman is still more likely to lose their infant, if they have a college degree than a white woman who did not graduate from high school. So that says a lot about education being a buffer for some people, but not for others. And so one of the things that I’ve really been trying to let people understand is that for Black women, the risk factors are riskier. But the protective factors, which is what is people aren’t really thinking about, are either less protected or not protected at all. So it’s not so much that there’s a time that is not optimal, but there is no optimal time. There’s no good age to have a baby.

Osha Davidson  17:06

Both Bentley Edwards and Hilton see a common factor in the higher IMR for highly educated Black women compared to their white peers.

Dr. Keisha Bentley-Edwards  17:16

Especially around Black History Month we like to talk about the first Black person to do this, the first Black woman to do that. But even if thinking about, this is more about men, Jackie Robinson, he died an early death. It was stressful to be the first in the room and the first to be that trailblazer that there is a toll that is taken on Black women’s bodies to be the first. And so Arline Geronimus has a theory called “weathering,” that these small slights, these microaggressions, these large and small slights over a lifetime takes a toll on your immune system, and how your body responds to stress. Because if you’re always on high alert, always in fight or flight, then your body doesn’t have a chance to recover. And those are, that’s more and more being looked at for its influence on infant mortality, specifically and overall perinatal health outcomes.

Osha Davidson  18:12

She talks about a term for the bodily toll on Black people who are the first and the best.

Dr. Keisha Bentley-Edwards  18:19

So John Henryism. So john Henry is based off of the mythical character, John Henry who fought against the machine. And this is actually based off of a true story, but it’s looked at as a tall tale. But the moral of the story is, is that you have this person who is fighting to win and to be acknowledged for their greatness and they’re working twice as hard or really 10 times as hard. And although he wins the fight, he falls dead.

Osha Davidson  18:53

That’s the price of winning.

Dr. Keisha Bentley-Edwards  18:55

That’s the price of winning. So Sherman James came up with this psychological concept of john Henry is on to talk about successful, particularly successful Black people who are working twice as hard. And there is a level of, “I have to do my best at all times in this because I am being judged more harshly. And so I’m working hard, I’m giving all that I’ve got every single day and fighting against the system every single day.” And this has a toll on your psychological health and your physical health. And so john Henry is um, has been looked specifically at for Black women, based off of Sherman James research with his theoretical framework, but then also his quantitative assessments of john Henryism.

Osha Davidson  19:47

It sounds exhausting to always have to be the first.

Dr. Keisha Bentley-Edwards  19:51

It is. I mean, I’m just old enough where I’ve been the first in some spaces but young enough that I’m not always the first. So I can tell you that there’s this, people have an idea that when you’re the first person to do something that you’re great, which is probably true. But there’s an assumption that people have been waiting for someone to be the first and no one is talking about all the folks who should have been the first, but for whatever reason was turned away, was knocked down or died before they could actually achieve that. So when you’re the first usually you have to fight your way there. It’s not an open door that gets you into the room. And once you’re in the room to be able to stay in the room, you usually have to fight.

Osha Davidson  20:44

And there’s a cost to that.

Dr. Keisha Bentley-Edwards  20:45

There’s a cost.

Osha Davidson  20:47

Dr. Hilton knows that cost firsthand, as the first African American woman to be hired by the Medical University of South Carolina. Here, she speaks more generally about the physiological effects of stress associated with being the first, but also of just being Black in America.

Dr. Ebony Hilton  21:06

If you think about it, that your body was not supposed to be under this fight or flight stress system, unless you were being chased or your life was literally in danger. Right? If a tiger was chasing you, you’re supposed to have this rush of adrenaline so that you can have enough energy to get away. But now we’re seeing instead is that, a day to day, minute by minute, there is a psychological fight or flight that people are experiencing, and particularly for those who are marginalized, in the minority communities, when you’re forced to be to conform or are forced to be out into an environment of where you’re being viewed as other how does that impact you? And when I say impact you I mean, your adrenal axis, right, your pituitary talks to your adrenal glands and tells you whether or not you’re safe. And so when you’re watching things on TV, for instance, if you’re if you’re seeing reports about police brutality and Trayvon Martin being shot, and Sandra Bland being killed, and Eric Garner being killed, and you’re seeing all these images of people that look like you, that your brain, your automatic response to that is to connect to that person because we look the same, we’re [???] the same, right? And so when you’re seeing that, and your heart rate starts to increase, or your breathing pattern starts to change, that is because you have a influx of hormones that impact, the contractility of your heart that impacts the constriction of your blood vessels. And in pregnancy, for instance, how does that affect the blood flow that’s going through that placenta an into that child?

Osha Davidson  22:49

Let’s go back to Dr. Hilton’s third reason for the racial disparities in infant and maternal mortality rates. The American healthcare system.

Announcer  22:59

Please welcome, Serena Williams!

Serena Williams  23:00

I was starting a Grand Slam, and I was pregnant. I was like, how am I gonna get through this? I told the nurse, I can’t breathe, I need to I need a I need a mask. So I put the oxygen mask on and I started coughing because I could breathe. It hurts so bad. It hurts so bad. So they were doing all these different tests and everything was negative. Like, listen, I need you to run a CAT scan with dye because I have a pulmonary embolism in my lungs. I know it, I know it, I’ve had this before. I know my body.

Alexis Ohanian  23:39

She was undoubtedly battling for her life and I was terrified that she might die.

Jill Smoller  23:45

Fortunately, because she advocated for herself, they ended up taking her for CAT scan and they found a pulmonary embolism.

Osha Davidson  23:51

Serena’s self-advocacy probably saved her life. If you’re a Black woman but not the number one tennis player in the world, non-Black doctors may see your self-advocacy as something less benign, says Dr. Bentley Edwards. Something based on another racial and gendered stereotype, the angry Black woman. If a Black woman asks too many questions or makes demands, like Serena did, the doctor or nurse may become defensive.

Dr. Keisha Bentley-Edwards  24:19

Are you listening to Black women? Or are you just hearing their volume? You know, that is something that drives me crazy. Or you’re reacting to some perceived disrespect when it’s patient self-advocacy? You have to understand that for Black women, they have to self-advocate because no one else is advocating for them. They may not be in the way that you’re comfortable with or that you expect you’re used to. But, you know, accept it for what it is and listen to what that patient is asking. So those are the types of trainings that need to occur.

Osha Davidson  25:05

But such training is still rare. I asked Dr. Hilton: And in your time as a as a medical student, where you and your cohorts given any anti-bias training.

Dr. Ebony Hilton  25:18

No, oddly enough. And to be honest with you, it’s because this whole idea of tackling racial health disparities really hasn’t become an in vogue topic until the last probably two, if not two and a half decades, really. And if you look at it, even with COVID-19 right now, what we’re seeing is that there is 60% of the cases that are being recorded, don’t even have a race assigned to them. They’ll have an ethnicity assigned to them. In the United States. We still are ignoring this huge red flag that we have as a nation to say that we were we were literally founded on, well, on racism. And we were founded on the principle of haves and have-nots and keeping separate, you know, groups of people. Because when you look at these studies, when you look at these numbers, and the numbers don’t lie, so when you look at these numbers, every day, I have to tell people at work because I now work at the University of Virginia, and, again, the only African American in my entire department. And so I tell them, you know, when, when I’m watching the numbers, as far as COVID-19, and I’m seeing that, you know, 70% of those who’ve died in Chicago are African Americans, although you know, they make up far fewer percentage, the same in Louisiana. You know, Black people make up what 32% yet nearly 70% of those who have died. In Michigan, Black people are 14% and yet 40% of those who died from COVID-19. When I see those numbers, it hits me in a different place. And so the passion and the outreach and the, “I have to do something,” comes from a different…it comes from my core. Because I’m thinking all the way back to that eight-year-old child who, who saw this disparity and knew that it wasn’t right. And, and so 30 years later, literally, it’s one of these questions of “Has anything changed in America? And what will it take to make that change.” As a nation and we know that we’re better together, we’re only as strong as our weakest link, so the sooner we get this figured out, that will be when we truly will be great.

Osha Davidson  27:46

We’ve been talking today with Dr. Keisha Bentley Edwards and Dr. Ebony Jade Hilton. Check out the always lively and insightful podcast, “The B-Word Unpacked,” hosted by Dr. Hilton, Kimberly Butler Willis, and Kellye Mackenzie.

If you have a question or comment about anything on our podcast or something we should have included but didn’t, we want to hear from you. Go to our website, www.TheAmericanProject.us, or you can always record your thoughts and send them by email to Osha@TheAmericanProject.us. And please subscribe to our podcast in iTunes, Google Play, Spotify or wherever you get your podcasts.

Resources

Fighting at Birth: Eradicating the Black-White Infant Mortality Gap, March 2018.

Infant Mortality Rate by Race/Ethnicity. The Kaiser Family Foundation.

On Twitter

@Keisha_Bentley. Keisha Bentley-Edwards Duke professor researching & teaching about race, health, women & teenagers. Associate Director of Research for @DukeSocialEQ

@EbonyJadeHilton. Ebony Jade Hilton, MD. Anesthesiologist. ICU Physician. Author. Activist. Medical Director, GoodStock Consulting.

@BlkMamasMatter. Black Mamas Matter Alliance. We envision a world where Black mamas have the rights, respect, and resources to thrive before, during, and after pregnancy.

@MySMFM. The Society for Maternal-Fetal Medicine (SMFM) represents the interests of high-risk pregnancy experts and the families they serve.

@BirthEquity. NatBirthEquityCollab. To reduce Black infant and maternal mortality through research, family centered collaboration, and advocacy.

@MHTF. MHTF. The Maternal Health Task Force strives to create a strong, well-informed, collaborative community focused on ending preventable maternal mortality and morbidity.

@RacialHealthEq. Racial Health Equity. Twitter account of the Center for the Study of Racism, Social Justice & Health at the Fielding School of Public Health at UCLA.

@NIMHD. Health Disparities. Official Twitter account of NIH’s National Institute on Minority Health & Health Disparities Office of Communications.

@BMHCaucus. Black Maternal Health Caucus. Congressional Caucus established by @RepUnderwood and @RepAdams to elevate the Black maternal health crisis and advance policy solutions to save lives.

@DukeSocialEQ. Duke Social Equity. The Samuel DuBois Cook Center on Social Equity at Duke University.

@momjustice. Mothering Justice. A movement of mothers working to make government more responsive to the needs of families. Follow @MJActionFund  for additional updates.

@KFF. Kaiser Family Foundation. Filling the need for trusted information on national health issues | nonprofit organization | health policy analysis, journalism & polling.

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