Birmingham, Alaska --Angelica Lyons knows it's dangerous for black women to have children in America.
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 third-highest maternal mortality rate in the nation.
Then in 2019, it almost happened to her.
What should have been a pleasant first pregnancy quickly turned into a nightmare when she started experiencing debilitating abdominal pains.
She said her requests for help were denied and she was sent home several times from the hospital. Doctors and nurses told her the contractions were normal, but her abdominal pain got worse and she started vomiting bile, she said. Angelica said they didn't take her seriously until she was in excruciating pain all over her body and the baby's heart rate plummeted.
She rushed to the operating room for an emergency C-section months before her due date and nearly died from undiagnosed sepsis.
To make matters worse, Angelica works at the University of Alabama in Birmingham, which is affiliated with the hospital where she was treated.
Her experience mirrors the medical racism, prejudice, and neglectful care suffered by Black Americans. Black women have the highest maternal mortality rate in the United States: 69.9 deaths per 100,000 live births in 2021, nearly three times the rate for white women, according to the Centers for Disease Control and Prevention.
Black children are more likely to die and are more likely to be born prematurely, paving the way for health problems that can accompany them for life.
"Race plays a huge role, especially in the South, in terms of how you're treated," Angelica said, and the consequences were disastrous. - People are dying.
Being black anywhere in America means living with multiple chronic diseases such as asthma, diabetes, high blood pressure, Alzheimer's disease and most recently, COVID-19. Black Americans have less access to adequate medical care; they live shorter lives.
From birth to death, they are much more likely to get sick and die from common diseases, regardless of wealth or social status.
Health problems in black Americans have long been attributed to genetics or behavior, when in fact a range of conditions linked to racism — including restrictions on where people live and a historical lack of access to health care — play a major role. effect.
Discrimination and prejudice in a hospital setting can be disastrous.
National health disparities have tragic implications: Over the past two decades, higher mortality rates among black Americans have contributed to an additional 1.6 million deaths compared with white Americans. Higher mortality rates lead to cumulative loss of more than 80 million years of life as people die young at a cost of billions of dollarshealth careand a missed opportunity.
A year-long Associated Press project has found that the health challenges facing Black Americans often begin before they take their first breath.
The Associated Press conducted dozens of interviews with doctors, medical experts, lawyers, historians and researchers who detailed how a history of racism beginning in America's founding led to the inequalities we see today.
Angelica Lyons' pregnancy problems started in the first trimester with nausea and severe heartburn. Doctors prescribed her medication to relieve symptoms, but it also caused severe constipation.
In the last week of October 2019, she started to have a stomach ache while giving exams to students.
"I remember talking to some of my students and they said, 'You don't look good, Mrs Lyons,'" Angelica recalled.
She called the labor department at the University of Alabama at Birmingham Hospital and said she was having trouble going to the bathroom and had stomach pains. The woman who answered the phone told her it was a common problem during pregnancy, and Angelica said it was nothing to worry about.
"She made me feel like my concerns were irrelevant, and since it was my first pregnancy, I decided not to go because I wasn't sure and thought I might be overdoing it," Angelica said.
The pain persists. A few days later, she went to the hospital and was admitted.
She had an enema - a procedure that uses liquid to cleanse or stimulate the bowel - to relieve constipation, but Angelica kept pleading with them that she was in pain.
"They're like, 'Oh, nothing, it's just Braxton Hicks contractions,'" she says. - They ignore me at all.
They sent her home but her stomach was still hurting and she was back in the hospital a day later. Several tests, including an MRI, failed to pinpoint the source of the problem.
Angelica was eventually moved to the hospital's delivery room so they could monitor her son's heartbeat, which had dropped a bit. There, they gave 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 started spitting out what looked like bile.
My pain was getting worse and I kept telling them, 'Hey, I'm in pain,'" Angelica said. "They'd be like, 'Oh, would you like some Tylenol? ’ But that didn’t help. "
She had trouble eating that night. When I got up to go to the bathroom, a sharp pain spread all over my body.
"I started screaming because I didn't know what was going on," she said. "I told the nurse I was in pain, please call the nurse."
What happened next remains murky. Angelica remembers the chaos as hospital staff rushed her into labor and laid out sheets for an emergency C-section while her family and ex-husband tried to figure out what was wrong.
She later found out that she almost died.
"I was on a ventilator," recalls Angelica, 34, "and I was coding."
She woke up three days later with the respirator in her mouth and unable to speak. She remembers frantically gesticulating at her mother and asking where her son Malik was.
he's good. But Anelika felt that she had been robbed of too much. She had never experienced the first moment of joy when a newborn was placed on her chest. 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 maternal sepsis compared with white women. Common symptoms include fever or pain in the infected area. Sepsis can develop rapidly, so timely response is key.
Early sepsis can mimic normal pregnancy symptoms, making it difficult to diagnose. Due to lack of training, some healthcare providers don't know what to look out for. But slow or missed diagnoses are also the result of bias, structural racism in medicine, and neglectful care that ignores patients, especially black women.
"The way structural racism affects this particular disease has not been taken seriously," said Dr. Laura Riley, chief of obstetrics and gynecology at Weill Cornell Medical College and New York-Presbyterian Hospital. "We know that delays in diagnosis lead to these very poor outcomes."
Over the next few days and weeks, Angelica asked medical staff what happened. But she felt the answers she got about how it happened were few and confusing.
A spokesman for the University of Alabama at Birmingham said in a statement to The Associated Press that they were unable to discuss Angelica's case due to patient privacy laws. They point to a recent internal survey by the Department of Obstetrics and Gynecology that found that most patients are satisfied with their care and "felt largely respected" and say universities and hospitals are making "conscious and proactive efforts to eliminate Health Inequalities and Maternal Mortality."
Angelica's son, Malik, was born eight weeks premature and weighed less than 5 pounds. He spent a month in intensive care. During the first year of his life, he made home visits to monitor his growth.
Although she is now a curious and lively three-year-old who loves to explore the world around her, Angelica remembers those days in the intensive care unit and feels guilty about not being able to be with him.
"Knowing that I might be dead, we might 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 the way medicine is failing black women. Historians have linked this abuse to the racist medical practices blacks endured during and after slavery.
Historian and author Deirdre Cooper Owens said that to fully understand the maternal and infant mortality crisis facing black women and babies, America must first consider the dark history of gynecology's origins.
"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 related 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 like J. Marion Sims, the once-lauded Alabama physician who experimented with excruciatingly painful surgeries without anesthesia on enslaved black women in the 1840s, is known by many as the "father of gynecology."
Long after the abolition of slavery, hospitals performed unnecessary hysterectomies on black women and sterilized them through eugenic programs.
Healthcare segregation has also played a large role in the remaining racial health disparities.
Before Congress passed the Civil Rights Act of 1964, black families were routinely excluded from well-funded white hospitals and often received limited, poor or inhumane care. Black-run clinics and doctors struggled to fill the void, but even after new safeguards were implemented, hospitals once reserved for black families remained understaffed, and black women did not receive the same support as white women on a regular basis.
A history of abuse and neglect contributes to a deep-seated mistrust of health care facilities in communities of color.
"We have to realize that this is not about some racists or some bad actors," 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 having happened and being part of the contours of history, and perhaps see them more as foundations and institutions that support us every step of the way."
Some health care providers still have misconceptions about the biological differences between blacks and whites, such as blacks having "less sensitive nerve endings, thicker skin and stronger bones." These beliefs lead doctors to now rate black patients lower in pain and recommend pain relief.
Disparities exist regardless of education level or income level. Black women with a college degree or higher have a pregnancy-related death rate more than five times that of white women. That is, the pregnancy-related mortality rate for black women with a college degree is 1.6. Twice as many white women with less than a high school diploma.
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 2021 infant mortality rate is 7.6 per 1,000 live births. The difference between black and white babies is huge: The infant mortality rate for white mothers was 5.8 in 2021, compared with 12.1 for black mothers, up from 10.9 the year before.
Black babies account for just 29 percent of births in Alabama, but nearly 47 percent of infant deaths.
A 2020 report by the Alabama Maternal Mortality Review Board found that of the 80 pregnancy-related deaths they reviewed in 2016 and 2017, more than 55 percent were preventable.
In 2018, Alabama established the Maternal Mortality Review Commission to investigate maternal mortality. But Dr. Scott Harris, the state health officer with the Alabama Department of Public Health, said more work is needed to get a fuller picture of why the disparities exist.
“We also certainly know from the national data that black women have worse maternal outcomes at every income level, which is very surprising,” Dr. Harris said. “Age matters, only zip code matters. Unfortunately What's interesting is that where people live, where these children are born, is strongly associated with infant mortality. I think we'll see something similar in terms of maternal outcomes."
Concerns about access to care and barriers remain.
In Alabama, 37 percent of counties are obstetric care deserts—more than 240,000 women live in counties with little or no care. About 39 per cent of provinces have no midwives.
Alabama is not alone. More than 2.2 million U.S. women of childbearing age live in fertility deserts, and an additional 4.8 million women of childbearing age live in counties where access to obstetric care is difficult.
Angelica Lyons said she wanted to seek obstetric care at another hospital, but the University of Alabama was the only hospital near her home that could handle her high-risk pregnancy, including early hypertension.
Dr. Harris acknowledged that lack of access to care is a barrier for black women living in rural areas of the state. Much of the state's public health efforts are concentrated in the rural Black Belt region, named for its fertile soil, but it's also where many plantations are concentrated.
Centuries later, the Black Belt remains a very poor and heavily populated area of black people. More than half of the country's black population lives in the South.
"We talk a lot about structural racism and how it affects African-American women and how it doesn't have a place in society," Harris said. "I think we should be open about calling it what it is."
Angelica Lyons' traumatic childbirth was not unique to her family. After suffering two miscarriages, sister Ansonia's pregnancy in 2020 was difficult.
Doctors told her that although she was vomiting blood, she still suffered from regular morning sickness.
She was eventually diagnosed with hyperemesis, hyperemesis gravidarum, and was severely dehydrated. Ansonia was in and out of the same hospital where her sister was being treated for months.
"They said, 'Welcome to pregnancy, baby. This is pregnancy,'" recalls Ansonia, 30. "I told her, 'No, it's not normal for me to vomit 10 to 20 times a day.' My own primary care didn't listen to me."
Ansonia said that during her pregnancy, she encountered hospital staff who made stark jokes, called her baby's father her "baby daddy," and often attacked black parents.
"She said, 'So, your dad, where does he work?'" Ansonia recalls. "I said, 'I don't know what a baby daddy is, but my baby's dad works.' She asked where he worked and I told her he had two companies and she seemed surprised."
Ansonia said when she signed up through her employer, staff assumed she didn't have health insurance.
Ansonia has type 2 diabetes and developed blood pressure and heart problems during pregnancy. She started seeing a cardiologist, and at 21 weeks pregnant, she was diagnosed with congestive heart failure. After giving her a bunch of pills, her doctor decided to give her an early labor by caesarean section.
Thinking of what she had witnessed her sister go through two years ago, Ansonia was terrified.
"There were several times when I told my boyfriend I thought I was going to die," she said.
The C-section went well. Ansonia's son Adrian was due in July 2021 but was born at the end of May.
He spent the first five days in intensive care, then was hospitalized for another two weeks due to early respiratory problems.
Black women have a higher cesarean delivery rate than white women, 36.8 percent versus 31 percent in 2021.
After giving birth, Ansonia's problems continued. 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 was still vomiting and fainting, occasionally requiring hospitalization. Her arm was injured by a needle she was treated for during her pregnancy. She always had a hard time healing bruises, a common problem for diabetics.
However, doctors involved throughout her pregnancy asked why she had bruises on her arms and asked if she had been "smoking marijuana" or using other recreational drugs. The hospital declined to comment, citing patient privacy laws.
"I said, 'That's because I got stuck a lot and had to be hospitalized.' I told him I didn't do drugs," she said.
He sent her blood sample for analysis anyway. The test came back negative.
"It made me distrust them and it made me not want to go back," she said.
There is some evidence that the pain of black mothers and their babies is being acknowledged, albeit too late.
In 2019, U.S. Representatives Lauren Underwood, D-Illinois, and Alma Adams, D-North Carolina, launched the Black Maternal Health Conference. It is now one of the largest bipartisan congressional caucuses. The caucus reintroduced the Monibus Black Maternal Health Act in 2019 and 2021, proposing sweeping reforms to increase funding and strengthen oversight. Major parts of the law have been passed, but the law itself has yet to be ratified.
President Joe Biden's FY 2024 budget includes $471 million in funding to reduce maternal mortality and morbidity, expand maternal health programs in rural communities, and implicit bias training and other programs. It also requires states to ensure that Medicaid continues for 12 months after delivery to cover the health insurance gap. It also includes $1.9 billion in funding for women's and children's health programs.
U.S. Health and Human Services Secretary Xavier Becerra told The Associated Press that more needs to be done at all levels of government to eliminate racism and bias within the health care system.
"We know that if we give mothers and babies access to care for a year, we may not only have good health outcomes, but a promising future for mothers and babies," he said.
Shelonda Lyons has always taught her two daughters the painful truth about racism, hoping it will prepare them for growing up in Birmingham, a Southern city known for its importance in civil rights history .
“When we were young, she showed us pictures of all black people being hanged and burned at the stake,” Angelica said, pointing to the book that still sits on the coffee table at home. "She wants us to understand, knowing where we live, that racism is something we can face."
But Shelonda could never prepare for what her daughters were treated to during their pregnancies. She remembers feeling helpless and angry.
"It's 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 fears that she or her grandson will have 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 deal with infections. She had to wear a colostomy bag for several months before recovering.
More than three years later, her stomach is still deformed.
"I love my baby, I love him no matter what, but it's not the body I was born with," she said. "This is the body caused by them not paying attention to me and not listening to me."
Kat Stafford lives in Detroit and is a national investigative reporter on the AP's race and ethnicity team. She is a 2022 Knight-Wallace Journalist Fellow at the University of Michigan. Follow her on Twitter: https://twitter.com/kat__stafford.