Giving Birth While Black / Asha Ivey-Stephenson, Wanda Irving, Abiodun Okon

“This can’t continue to go on and if I have to be the one to take up the mantle, then I’ll do that because that’s what my daughter would have done.” -Wanda Irving

The United States is the richest country in the world with some of the most advanced medical treatments available anywhere. But you’d never know it if you knew how many mothers die in — and after — childbirth here. The U.S. has one of the highest maternal mortality rates in the industrialized world and the rate is staggeringly high for women of color, especially Black women. In this special bonus episode about maternal mortality we’re going to hear firsthand how this trend is affecting Black mothers and learn about one possible solution to this deadly disparity.

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Transcript: BONUS —  Maternal Health Disparities

Asha Ivey-Stephenson: I mean, when basically controlling for all things, one of the things that you hear over and over is about black, black women dying at startling rates.

Abiodun: She really took her time. And so it’s not lost on me that that’s not the situation with a lot of other women. Um, so yeah, things may have turned out differently and I’m grateful that she was there. 

Celine Gounder: Hi, everyone. Dr. Celine Gounder, here. I’m the host of AMERICAN DIAGNOSIS, the podcast about health and social justice. 

The United States is the richest country in the world … with some of the most advanced medical treatments available anywhere… but you’d never know it if you saw how many mothers die in — and after — childbirth here. The U.S. has one of the highest maternal mortality rates in the industrialized world. And it’s getting worse. 

Non-Hispanic Black women are more than three times as likely to die from complications due to childbirth than their white counterparts. But no one knows about this disparity in healthcare more than Black women themselves… Tennis star Serena Williams is one of many Black women speaking out on their experience giving  birth while Black. In an HBO documentary, she told a harrowing tale of neglect that could have resulted in her death. 

Serena Willams: I remember being wheeled back to the operating room because they had to reopen my C-Section and restitch it and they had to check for, you know, blood clots and everything so they were doing all these tests and everything was negative. I’m 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’ve had this before. I know my body.”

Celine Gounder: If this happened to a celebrity like Serena Williams… What could happen to other Black mothers in America? Today we are bringing you a special bonus episode about maternal mortality. We’re going to hear first hand how this is affecting Black mothers … and one possible solution to this deadly disparity.

Asha Ivey-Stephenson: Hi, my name is Asha Ivey-Stephenson, last name is hyphenated.

Celine Gounder: Asha is a behavioral scientist at the CDC. In 2016, she was expecting her first child, a boy named Ronald… But it was not an easy pregnancy. 

Asha Ivey-Stephenson: Pretty early in my first pregnancy with Ronald, I was hospitalized, for pretty much, most of the duration of the pregnancy and so I was out of the office for about nine months. And so that’s not the typical maternity leave. 

Celine Gounder: Asha says she got very good care while she was in the hospital getting ready to have her baby… but after her son was born, she says the team became more hands off.

Asha Ivey-Stephenson:  It was very clear that the attention had shifted. And as a result, the, um, The level of attention to detail for certain things that really could have slipped under the radar. It was, it was quite scary. 

Celine Gounder: Many people may think the act of childbirth is the most dangerous time for a mother, but more than half of maternal deaths in the United States happen after the child is born. One of the issues Asha dealt with was postpartum preeclampsia. This can cause dangerously high blood pressure. 

Asha is a medical doctor with expertise in epidemiology and behavioral science. She knew the treatment she was getting was not working, but she struggled to convince her care team to take her concerns seriously. When people saw her as a Black mother in the hospital, she couldn’t get through to them. But things changed when she brought up her education and job at the CDC. 

Asha Ivey-Stephenson: This was when my, um, blood pressure was skyrocketing  – I’m in that moment. And I’m like, You know, this medicine is not working. I know that. And having to look, I work at the CDC, I have a PhD in this, and then unfortunately seeing things happen after that information was known.  You know, but why, why does that matter? it’s just infuriating while I’m sitting here, I’m wringing my hands. Cause it’s just the fact that you are in a vulnerable situation and should be tended to just like any other woman.

Celine Gounder: Asha eventually left the hospital healthy with her newborn son. But her friend Shalon — another African-American woman who worked for the CDC — also experienced a difficult pregnancy. Shalon and Asha became quick friends at the CDC. 

Asha Ivey-Stephenson: She was no nonsense. I’m smiling as I, um, you know, um, think about, you know, some of our, of our interactions and, um, you know, she was. Her smile makes you smile… remembering her smile and her laugh.

Celine Gounder: Their shared experience with difficult pregnancies brought them even closer.

Asha Ivey-Stephenson: Some of the things that Shalon and I went through,  we shouldn’t have had to go through, I mean, just, questioning our, you know, we, we feel certain things, our bodies, we know,

Celine Gounder: And this is not an unusual phenomenon. African-American women all over the country tell the same stories about medical providers ignoring what they say. Shalon was no different. 

Wanda Irving: My name is Wanda Irving and I am the mother of Shalon Irving. 

Celine Gounder: Wanda knew firsthand how passionate Shalon was about her work at the CDC. She was committed to tackling big issues like health inequity.  

Wanda Irving: She wanted to make sure that the work that was being done was helping people. She wanted to make sure that the research that was being done was not sitting on the shelf and just gathering dust, but was actually put to use on the ground in the community with folks that needed to have that information.

Celine Gounder: As a teenager, Shalon was diagnosed with a hormonal condition that can make getting pregnant difficult. She also had fibroids — non-cancerous growths of the uterus that complicate pregnancy and even increase the risk of a miscarriage.

But Shalon always wanted to be a mother. She tried for years to get pregnant.

Wanda Irving: So she went for three years doing the IVF. And I think she got pregnant once, but then the fetus did not survive…. There was, um, some issues. And so that really devastated her for a while, but, um, she didn’t give up. She kept trying and it, it just never worked. 

Celine Gounder: Shalon eventually got pregnant. But Wanda was worried. 

Wanda Irving: The first thing that went through my mind was, Oh my God, how is she going to do this with everything else she’s doing? So I became happy for her, but I was a little concerned. And she even asked me, she said, mom, you’re not as happy as I thought you’d be. Are you worried? I said, yes, I am very much so, but I tried to keep that to myself and I showed her as much happiness as I could. But I was scared.

Celine Gounder: Wanda’s fear was not unfounded. Her family had a history of high blood pressure and other health problems. 

Wanda Irving: In my family, my mother died of pulmonary, embolism, I guess. And my son died of a pulmonary embolism as well. So, um, I think we had Shalon tested after my son, her brother died. And that’s when we found out that she had the Factor Five Leiden. 

Celine Gounder: Factor Five Leiden is a disorder that increases your chances of developing blood clots. Women with the condition have a higher chance of developing these clots during pregnancy. 

Wanda Irving: They were going fine with that. She had, um, well, she was taking the oral medication until she found out she was pregnant and then it was three shots a day after that.

Celine Gounder: Shalon thought a lot about the community she wanted to help her raise her baby. 

Wanda Irving: Well she knew, she had already chosen, um, the pediatrician and dentist and all of that for her child. But she also had chosen a godmother and a godfather that would be there for her child incase anything happened to her. She had friends and colleagues that were willing to, um, be part of her village. That would in fact be there for the child that would come and visit and just like, um, relatives like a family. So she had extended her family. 

Celine Gounder: Nine months later, Shalon gave birth to her daughter, Soleil.

Wanda Irving: For the first day, she was just over the moon. She was just so excited and so happy to see her daughter.

Celine Gounder: But problems started to arise quickly. 

Wanda Irving: The nurse came and I think it was on the. It’s third or fourth visit that the nurse made that she started noticing some problems with the blood pressure.

Celine Gounder: In addition to her skyrocketing blood pressure, Shalon was rapidly gaining weight. Her legs were swelling and despite drinking lots of liquids, she was not urinating. Shalon went to her doctor several times to point out these issues,  but each time, she was dismissed. 

Wanda Irving: They were telling her that she had just had a baby and that she should give it time. It wasn’t anything to be concerned about. And we’re both in the room saying, look, there is something wrong clearly, look at her legs. It’s swollen. Why is it swollen? Well, let’s see if it’s a blood clot and Shalon was, look, I know what a blood clot feels like. This is not a blood clot. There is something else wrong.

Celine Gounder: Shalon was sent home with a pill to lower her blood pressure. 

Then, one day, things got really bad. 

Wanda Irving: That was probably around the fourth or fifth time that she had been to the same doctor with the same complaints. We went in, we saw the nurse practitioner that day. She asked to see the doctor, but the doctor happened to be too busy. 

Celine Gounder: He prescribed her more pills, and again, she was sent home.

Wanda Irving: So we went home, put the baby down, we were sitting and talking and she says, I just don’t feel well, there’s something wrong, mommy. I don’t know, but I don’t feel well. And she said, well, let me try the pill. And she just collapsed her heart stopped and, um, called nine one one and they got there and rushed her to the hospital, but there was nothing they could do for her. 

Celine Gounder: In the days that followed… Wanda wanted answers but had to seek those on her own.

Wanda Irving: I asked for an autopsy. They refused to do one. And they said, well, there was no need to do one. So if you want one, you have to pay for it. So that’s what I did is I paid for it myself because they refused to do it. The autopsy was pretty inconclusive. It just said that, um, basically she died from complications of hypertension. And that was because of the high blood pressure. Had he done something about the high blood pressure, put her in the hospital to have that under control, then I wouldn’t have seen those kinds of results and she would still be here. The rage was just unbelievable. Just wanted to go… Ballistic, but to what avail?

Celine Gounder: And with all of this happening, Wanda had another priority. Her granddaughter, Soleil. 

Wanda Irving: I didn’t have time really to grieve at that point because there was this little person that needed to be taken care of.

Celine Gounder:  As she’s gotten older – What do you tell her about Shalon?

Wanda Irving: We talk about her mommy every single day. There are pictures, all over the walls in the house.  She knows so much. It’s like, okay, a commercial come on and she says, Oh, mommy did not like commercials, turn that [laughs]. It’s like, that’s the kind of relationship she has now with the mommy that isn’t here. That’s hard because I still have to, to relive all of those, just to give her those memories. But I think it’s important that she knows that she has a mommy or she had a mommy who loved her and if she could be here, she would.

Celine Gounder: Maternal mortality rates in the United States have been on the rise since 2000. 

Asha Ivey-Stephenson: Things are not going in the right direction.

Celine Gounder: That was Asha Ivey-Stephenson again, talking about the findings from a 2018 CDC report. Today, Black mothers are dying at more than twice the rate of white mothers. And this is a problem for Black women across all walks of life.

Asha Ivey-Stephenson: Basically controlling for all things, one of the things you hear over and over is about Black women dying at startling rates higher than everyone else. And, this not necessarily being related to income, education, you know some of what we, we go to. This not that.

Celine Gounder: This isn’t a problem about education… or income… It’s a problem about race. Asha says the only major differentiator when it comes to this disparity in maternal mortality rates is race.

Asha Ivey-Stephenson:  definitely is a difference with this particular issue, institutional racism and black maternal mortality, 

Celine Gounder: Along with explicit racism, Asha says unconscious bias is part of the problem too. A 2017 Harvard Medical School study found that doctors were more likely to perceive their Black patients as “uncooperative” and less likely to adhere to treatment. The result? Physicians were less likely to provide the care those patients needed. This unconscious bias can lead to Black patients being underdiagnosed, dismissed and ignored, leading to worse outcomes than in white Americans. Wanda Irving knows this too well.  

Wanda Irving: Racism is something that’s insidious. It’s, it’s a feeling that you have the right to, to disregard another human being and not to take that person’s being into consideration. 

Celine Gounder: But there is a surprisingly simple solution to this problem — having a physician that looks like you. 

Abiodun Okon: So my name is Abiodun – full name is Abiodun, but like I said, most people call me Abby or Biodun for short.

Celine Gounder: Abiodun was born in Nigeria but grew up in Brooklyn. She’s a professor at Pace University. She says that she has always tried to seek out black doctors as her primary physicians. And so when she found out she was pregnant, her OBGYN at the time was not only black, but a woman too. 

Abiodun Okon: She was very hands on. I remember when I was pregnant, she used to tell me, you know, that she used to say, listen, that is my baby until you give birth. And so until you give birth, both of you are my babies. You need to, I need to make sure that you’re both okay. 

Celine Gounder: Abiodun gave birth to her son via C-section and was discharged a couple of days later. But after coming back home she began to feel like she couldn’t take a deep breath. 

Abiodun Okon: So I ended up going to the ER, um, where I delivered and, you know, so I walked in and I said, Hey, you know, I’m, I’m five days postpartum. And I feel like I can’t breathe. And you know, the minute I told them, I was five days postpartum from the time I walked into the front desk, they really whisked me back to make sure that everything was okay.

Celine Gounder: Her blood pressure was dangerously high. Doctors diagnosed her with postpartum pre-eclampsia, and she was admitted to the hospital. Her OBGYN was an ever-present advocate.

Abiodun Okon: There was a point where they wanted to release me like two days early, and my doctor stepped in and said, no, we need to watch her a little more closely. And made it very clear from then on that, you know, whatever happens with me, she needs to know about it first.

Abiodun Okon: She really took her time. And so it’s not lost on me that that’s not the, the situation with a lot of other women. Um, so yeah, things may have turned out differently and I’m grateful that she was there. 

Celine Gounder: But many women who look like Abiodun, aren’t receiving that level of care. When she heard about the troubling statistics on Black maternal mortality, she was not surprised. 

Abiodun Okon: I mean, if I can be candid, you know, black people always get the short end of the stick. And so whether it’s, you know, education or health care, um, you know, or, you know, access to jobs, we, we always kind of get the lower end of it. So I wasn’t surprised that that was the case.

Celine Gounder: This is why Abiodun has made it a priority to seek out Black doctors.

Abiodun Okon: So I think the first thing that needs to happen is that, you know, black women need to have adequate access to care  to be able to, you know, put those questions before a doctor, um, who is going to listen to them and doesn’t have biases against black women where they feel maybe black women don’t feel pain or, um, are not experiencing what they’re experiencing. So, one, having access to care and once you do have that care, being able to have access to someone who is open and honest with them and who really is going to help provide that care and walk them through the process. 

Celine Gounder: Abiodun was lucky. She got a doctor who went above and beyond but she fears that won’t always be the case. 

Abiodun Okon: It’s very scary. And even thinking about having another child, I’m terrified because she’s – she’s since retired. So I’m like, who am I going to find that’s going to provide that kind of care just as good or even better? 

Celine Gounder: Shalon’s story is evidence that that fear is warranted. In the weeks leading up to her death, Shalon may have had a premonition of what was going to happen. After Shalon died, Wanda’s niece found a letter she wrote to Wanda. 

Wanda Irving: I’m sorry that I have left you on the particular day that I’m writing this. I have no idea how that may have occurred, but know that I would never choose to leave. I know it seems impossible right now, but please do not let this break you. I want you to be happy and smile. I want you to know that I’m being watched over by my brothers and grandma. And that we are all watching you. Please try not to cry. Use your energy instead to feel my love through time and space, nothing can break the bond we have and you will forever be my mommy and I, your baby girl,

Celine Gounder: For Wanda and Asha, Shalon is kept alive through her work with the Doctor Shalon’s Maternal Action Project. It’s a non-profit Wanda created in the wake of her daughter’s death. She uses it to bring attention to the inequities in healthcare for Black mothers.

Wanda Irving: I don’t want her death to have been in vain. I want her name to be remembered. And any time you think or say the name Dr. Shalon, Maureen Irving, you will think about maternal mortality and the health and wellbeing of Black women. And that is the only thing, in addition to my granddaughter’s smile, that gets me out of bed every morning. Is not to let that happen. That never will her name be forgotten. 

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Today’s episode was produced by Zach Dyer, Temitayo Fagbenle, and me. Our theme music is by Allan Vest. Additional music by The Blue Dot Sessions. 

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I’m Dr. Celine Gounder. Thanks for listening to AMERICAN DIAGNOSIS.