Why do so many black women die pregnant? Participation and access are factors. (2023)

Published: May Sunday 23, 2023 at 10:38 CDT

BIRMINGHAM, Alabama (AP) -- Angelica Lyons knows that giving birth to black women in America is dangerous.

As a public health instructor, she teaches students about racial health disparities, including that Black American women are nearly three times more likely to die during pregnancy or childbirth than any other race. Her home state of Alabama has the country's third-highest maternal mortality rate.

Then, in 2019, it almost happened to her.

What should have been a joyous first pregnancy quickly turned into a nightmare when she started experiencing debilitating stomach pains.

She said her pleas for help were ignored and she was sent home from the hospital several times. Doctors and nurses told her that her contractions were normal, she said, although the abdominal pain worsened and she started vomiting bile. Angelica said she wasn't taken seriously until she felt excruciating pain all over her body and her baby's heart rate plummeted.

She was taken to the operating room for an emergency c-section several months before her due date and nearly died of undiagnosed sepsis.

Even more frustrating, Angelica works at the University of Alabama at Birmingham, which is affiliated with the hospital where she was treated.

Warning: Some recordings may be disturbing. Viewers have to decide for themselves.

Her experience reflects the medical racism, prejudice, and neglect experienced by African Americans. According to the Centers for Disease Control and Prevention, black women have the highest maternal mortality rate in the United States with 69.9 deaths per 100,000 live births in 2021, nearly three times that of white women.

Black babies are more likely to die and more likely to be born prematurely, paving the way for health problems that can haunt them throughout their lives.

"Race plays a huge role, especially in the South, in how you are treated," Angelica said, and the results were catastrophic. "People are dying."

Being black anywhere in the United States is associated with higher rates of chronic diseases such as high blood pressureasthmadiabetes mellitus,hypertension,Alzheimer's diseaseand most recently COVID-19. Black Americans have less access to adequate medical care, their life expectancy is shorter.

From birth to death, they are much more likely to get sick and die from common diseases, regardless of their wealth or social status.

Health problems among Black Americans have long been attributed to genetics or behavior, when in fact a combination of racism-related conditions - including residence restrictions and a historical lack of access to medical care - played a significant role.

Discrimination and prejudice in a hospital environment can be disastrous.

Health disparities between countries have serious consequences: Over the past two decades, higher death rates among black Americans have contributed to1.6 million additional deathscompared to white Americans. Higher mortality results in a combined loss of more than 80 million life years due to premature death and billions of dollars in lost health care and opportunity.

A year-long Associated Press project has shown that the health challenges black Americans face often begin before they take their first breath.

The Associated Press has conducted dozens of interviews with doctors, medical experts, lawyers, historians and researchers who have described how the history of racism, beginning with the founding of America, has led to today's differences.

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Angelica Lyons' pregnancy problems began in the first trimester with nausea and severe acid reflux. The medications she prescribed helped relieve her symptoms, but also caused severe constipation.

In the last week of October 2019, while performing a quiz for her students, she developed a severe stomach ache.

"I remember talking to some of my students and they said, 'Miss Lyons, you don't look good,' Angelica recalls.

She called the University of Alabama delivery room at Birmingham Hospital and told them she was having trouble going to the bathroom and was having abdominal pain. Angelica said the woman who answered the phone told her it was a common pregnancy problem and not to worry too much about it.

"She made me feel like my worries didn't matter because it was my first pregnancy, so I decided not to go because I wasn't sure and thought I might be overreacting," Angelica said.

The pain doesn't go away. After a few days, she was hospitalized and admitted.

She had an enema — a procedure that uses fluids to cleanse or stimulate the bowel — to relieve her constipation, but Angelica kept begging them that she was in pain.

"They were like 'Oh nothing, it's just Braxton Hicks contractions,'" she said. "They just ignore me."

She was sent home, but her stomach still hurt, so she returned to the hospital a day later. Numerous tests, including magnetic resonance imaging, failed to identify the source of the problem.

Eventually, Angelica was transferred to the hospital delivery room so they could monitor her son's heart rate, which had dropped slightly. There they performed another enema, which finally relieved the pain. She was also diagnosed with preeclampsia, a dangerous condition that can lead to serious pregnancy complications or death.

Then she began spewing what looked like bile.

"My pain got worse and I kept telling them, 'Hey, I'm in pain,'" Angelica said. "They said, 'Oh, do you want some Tylenol? 'And it didn't help."

That night she barely ate her dinner. When I got up to go to the bathroom, a sharp pain spread through my whole body.

"I started screaming because I didn't know what was going on," she says. "I told my sister I'm in pain and please call the nurse."

What happened next remains unclear. Angelica recalls the chaos caused by the hospital staff rushing her into labor, spreading a blue sheet over her C-section while her family and ex-husband tried to figure out what was going on.

She later found out that she was close to death.

“I was doing CPR,” recalls Angelica, 34, “and I was coding.”

She woke up three days later with a respirator in her mouth and was unable to speak. She remembers frantically gesturing to her mother and asking where her son Malik was.

he is good. But Angelica felt she was robbed of many things. She had never experienced the first joy of holding a newborn to her breast. She doesn't even know what her son looks like.

Maternal sepsis is the leading cause of maternal death in the United States. Black women are twice as likely to develop severe sepsis than white women. Common symptoms include fever or pain in the infected area.sepsisThings can evolve quickly, so reacting quickly is crucial.

Early sepsis can reflect typical pregnancy symptoms, making it difficult to diagnose. Due to a lack of training, some healthcare professionals do not know what to look out for. But slow or missed diagnoses are also the result of prejudice, structural racism in medicine and neglected care that prevents patients, especially black women, from hearing.

"The way in which structural racism plays a role in this particular condition has been underestimated," said Dr. Laura Riley, chief of the division of obstetrics and gynecology at Weill Cornell Medicine and New York-Presbyterian Hospital. "We know that delayed diagnosis is responsible for these very poor outcomes."

In the days and weeks that followed, Angelica demanded an explanation from the medical staff about what had happened. But she felt that the answers she was getting about how it happened were few and confusing.

A spokesperson for the University of Alabama at Birmingham said in a statement to The Associated Press that they cannot discuss Angelica's case due to patient privacy laws. They point to a recent internal survey conducted by their obstetrics and gynecology department, which found that most patients are satisfied with their care and "feel highly respected" and that universities and hospitals "continue to consciously address health disparities." and maternal mortality.

Angelica's son Malik was born eight weeks premature and weighed less than 5 pounds. He was in intensive care for a month. In his first year of life he received home visits to monitor his development.

Although she is now a curious and lively 3-year-old who loves to explore the world around him, Angelica remembers her days in ICU with a sense of guilt over not being able to be with him.

"Knowing I could be dead, we could be dead, it's scary," Lyons said, wiping away tears. ___

For decades, frustrated fertility advocates and medical experts have tried to sound the alarm about how drugs fail black women. Historians follow the abuses closelyracist medical practicesWhat blacks endured during and after slavery.

Deirdre Cooper Owens says that to fully understand the maternal and infant mortality crisis among black women and children, the nation must first look at the dark history of gynecology's origins.historian and writer.

"The history of this particular branch of medicine ... began on a slave ranch in Alabama," Owens said. "Advances in obstetrics and gynecology are so closely tied to slavery and literally built on the wounds of black women."

Experimental reproductive procedures of the time, such as cesarean sections, were often performed on enslaved black women.

Doctors such as J. Marion Sims, once a highly regarded Alabama physician, known to many as the "father of gynecology," performed painful operations on enslaved black women without anesthesia during an experiment in the 1840s.

Hospitals performed unnecessary hysterectomies on black women, and eugenics programs sterilized them long after slavery was abolished.

isolation in healthcareShe played an important roleAmong racial health disparities that still exist.

Before Congress passed the Civil Rights Act of 1964, black families were largely denied access to well-funded white hospitals and often received limited, poor, or inhumane care. Black-led clinics and doctors worked to fill the gap, but even with the new safeguards, hospitals once reserved for black families remained underfunded and black women did not regularly receive the same support as white women.

The history of abuse and neglect contributes to a deep-seated mistrust of the medical establishment in communities of color.

"We need to realize that this isn't just about being a racist or a bad actor," said Rana A. Hogarth, an associate professor of history at the University of Illinois at Urbana-Champaign. "People need to stop seeing things like slavery and racism as part of the outlines of history, and see them more as foundations and institutions that stand with us every step of the way."

Some medical providers are still holding outmisconceptionAs for the biological differences between blacks and whites, for example, blacks have "less sensitive nerve endings, thicker skin, and stronger bones." These beliefs lead healthcare professionals today to rate black patients as having less pain and recommending less relief.

There are differences regardless of education level or income level. Pregnancy-related mortality among highly educated black women is more than five times higher than among white women. Notably, the pregnancy-related death rate for black women with a college degree was 1.6. Twice as many as white women with less than a high school education.

In Angelica Lyons' home state of Alabama, about 40 mothers died within a year of giving birth. The loss of black mothers is disproportionate.

The state's infant mortality rate in 2021 is 7.6 per 1,000 live births. The gap between black and white babies is huge: the infant mortality rate for white mothers is 5.8 in 2021, compared to 12.1 for black mothers, down from 10.9 last year.

Black children account for only 29 percent of Alabama's births, but nearly 47 percent of infant deaths.

The 2020 Alabama Maternal Mortality Review Board report found that of the 80 pregnancy-related deaths they analyzed in 2016 and 2017, more than 55 percent were preventable.

Alabama established a Maternal Mortality Review Commission in 2018 to investigate maternal mortality. But dr. Scott Harris, the state health officer for the Alabama Department of Public Health, said work is still underway to fully understand why there are differences.

"We also know, of course, that black women have worse maternal outcomes at every income level in the national data, which is very surprising," said Dr. Harris. "Age matters, it's all about zip codes. It matters. Unfortunately, where people live where these babies are born is highly correlated with infant mortality. I think we're going to see something similar when it comes to maternal outcomes."

Concerns about access to care and barriers remain.

In Alabama, 37 percent of counties are maternity deserts — counties where more than 240,000 women live with little or no care. About 39 percent of the provinces do not have any maternity nurses.

Alabama is not alone. More than 2.2 million American women of childbearing age live in the deserts of maternity care, and an additional 4.8 million women of childbearing age live in counties with limited access to maternity care.

Angelica Lyons said she wanted to seek maternity care at another hospital, but the University of Alabama was the only hospital near her home that could handle her high-risk pregnancy, including high blood pressure.

Dr. Harris acknowledged that the lack of access to health care is a barrier for black women living in rural areas of the state. Much of the state's public health efforts have focused on the rural Black Belt, so named for its fertile soil, but it is also an area where many plantations are concentrated.

Centuries later, the Black Belt remains a very impoverished area with a large black population. More than half of the country's black population lives in the South.

"We've talked a lot about structural racism and how it affects African American women and how it has no place in society," Harris said. "I think we should be open to what it's called."

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The traumatic birth of Angelica Lyons was not the only one in her family. After two miscarriages, Sister Ansonia became pregnant in 2020 and life was tough.

Doctors told her that although she was vomiting blood, she suffered from frequent morning sickness.

Eventually she was diagnosed with hyperemesis, hyperemesis gravidarum and was extremely dehydrated. Ansonia was in and out of the same hospital where her sister had been treated for months.

"They said, 'Welcome pregnant, honey. This is pregnancy,' recalls 30-year-old Ansonia. "I told her, 'No, it's not normal for me to throw up 10 to 20 times a day.' My own primary care did not listen to me."

During her pregnancy, Ansonia said she encountered hospital staff telling stereotypical jokes and calling her baby's father "baby daddy," a term often used to mock black parents.

"She said, 'So your baby's father, where does he work?' Ansonia recalls. "I said, 'I don't know who the baby's father is, but my baby's father works. "She asked where she worked and I told her she had two companies and she pretended to be surprised."

Ansonia said when she bought insurance through her employer, employees assumed she didn't have health insurance.

Ansonia has type 2 diabetes and had blood pressure and heart problems during her pregnancy. She began seeing a cardiologist and was diagnosed with congestive heart failure when she was 21 weeks pregnant. She was on a lot of medication and her doctor decided to give birth early by caesarean section.

Ansonia is shocked because she witnessed what her sister went through almost two years ago.

"There were a few times when I told my boyfriend I thought I was going to die," she said.

The cesarean section was successful. Ansonia's son Adrien was due to be born in July 2021, but was born at the end of May.

He spent the first five days in intensive care before being hospitalized for a further two weeks due to early respiratory problems.

By 2021, black women will have a higher rate of cesarean deliveries than white women, 36.8 percent versus 31 percent.

Ansonia's problems continued after giving birth. She eventually needed a blood transfusion and was unable to see her son for the first few days after his birth.

Months after giving birth, she continued to vomit and occasionally faint, resulting in intermittent hospitalization. Her arm was injured by needles used during pregnancy. Her bruises heal slowly, which is a common problem for diabetics.

However, the doctor involved during the pregnancy asked why she had bruises on her arms and asked if she had "smoked marijuana" or taken any other recreational drug. The hospital declined to comment, citing patient privacy laws.

"I said, 'It's because I've been trapped and hospitalized so many times.' I told him I wasn't on drugs," she said.

He kept sending her blood results for testing. The test came back negative.

"It made me distrust them and not want to go back," she said.

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There are signs that the plight of black mothers and their children is being recognized, albeit belatedly.

In 2019, U.S. Representatives Lauren Underwood of D-Illinois and Alma Adams of D-North Carolina founded the Black Maternal Health Caucus. It is now one of the largest bipartisan congressional clubs. The club reintroduced the Black Maternal Health Bus Act in 2019 and 2021, proposing sweeping reforms to increase funding and strengthen oversight. The main parts of the bill have been passed, but the bill itself has yet to be approved.

President Joe Biden's budget for FY2024 includes $471 million to fund maternal mortality and morbidity, expanding maternal health programs in rural communities, and implicit bias training and other programs. It also requires states to provide 12 months of continuous postpartum Medicaid to close the health insurance gap. It also includes $1.9 billion to fund health programs for women and children.

U.S. Secretary of Health and Human Services Xavier Becerra told The Associated Press that more needs to be done at all levels of government to eradicate racism and prejudice in health care.

"We know that if we care for mothers and children year-round, we can help not only with good health outcomes, but also with a hopeful future for mothers and children," he said.

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Shelonda Lyons used to teach her two daughters the painful truth about racism, hoping it would prepare them for life in Birmingham, a southern city known for its importance in civil rights history.

"When we were young, she showed us pictures of all the black people hanging from trees and burning," Angelica said, pointing to a book that was on the coffee table at home. "She wants us to understand that, to know where we live and that racism is something we can relate to."

But Shelonda could never prepare for what happened to her daughters during pregnancy. She remembers feeling helpless and angry.

"It was like a slap in the face because when do you realize you're dealing with people? It doesn't matter what color they are," she said, adding that she now worries about how long she or her grandchildren need to go to the doctor "I don't have much confidence."

Angelica underwent two surgeries in the weeks following her C-section to repair internal damage and address infection issues. She had to wear a colostomy bag for several months before recovering.

More than three years later, her abdomen is still deformed.

"I love my baby and I love him too, but this is not the body I was born with," she said. "This is the body because they don't pay attention to me and don't listen to me."

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Detroit resident Kat Stafford is the author of the national survey for The Associated Press' race and ethnicity team. She is a 2022 Knight-Wallace Report Fellow at the University of Michigan. Follow her on Twitter:https://twitter.com/kat__stafford.

Copyright 2023 Associated Press. All rights reserved.