A crisis within a crisis
Black women are more likely to die from pregnancy complications than any other demographic group, the CDC says. Advocates fear the pandemic could make it worse
At six months pregnant, Nisaa Borer Nelson was diagnosed with Covid-19. Instead of oxygen, Borer Nelson says nurses at a Minneapolis hospital gave her an IV saline drip.
She had no one advocating for her, she recalls. Her husband wasn’t allowed in her room because of Covid restrictions. She was in distress and worried. The couple already had picked out a name for their fifth child she feared wouldn’t survive.
“I remember being in the hospital just praying … Lord, if this is your will I accept it, but if it's not give me the strength to fight,” she said. “I thought I was going to die.”
Borer Nelson fought, and her and her daughter Joy, now two months old, have since recovered. Yet, the frustration over nurses dismissing her health concerns, echoes a reality that mothers, advocates and lawmakers say has helped fuel a maternal health crisis in the United States that disproportionately impacts Black women.
The issue, advocates fear, could be exacerbated by the Covid-19 pandemic, which took a turn in recent weeks when the Delta variant and communities with low vaccination rates led to a surge in cases. The pandemic already has laid bare existing health disparities. Yet, it’s too soon to tell what long-term impact the pandemic will have on the maternal health crisis, experts say. Pregnant women remain at high risk for severe complications and hospitalization if they contract Covid-19, and the US Centers for Disease Control and Prevention has strengthened its recommendation for them to get vaccinated.
The disparity has reemerged as an urgent issue for both lawmakers and health care providers after a slate of bills to combat the crisis were introduced in Congress earlier this year. New data also shows that Black women continue to face a greater risk of childbirth complications than White women.
The US has the highest maternal mortality rate among developed countries. About 700 women die each year in the US due to a pregnancy-related complication either during pregnancy or within the year after delivery, says Dr. Wanda Barfield, Director of the CDC’s Division of Reproductive Health.
“What's even more striking is when you're looking at the differences between Black and White women,” she says.
Policymakers say federal legislation is key to overcoming centuries of health care bias and barriers to access that have led to poor outcomes for Black mothers.
Earlier this year, Sen. Cory Booker, Rep. Lauren Underwood and Rep. Alma Adams unveiled the Black Maternal Health Momnibus Act of 2021. The sweeping legislation includes several bipartisan bills that seek to address the social determinants of maternal health with funding for community-based organizations, improving data collection and addressing the impacts of Covid-19 and climate change on outcomes for mothers and infants. The lawmakers are lobbying for the House and Senate leadership to include the bill in the next Covid-19 recovery package.
Hear Black mothers recall their experiences with childbirth as well as doctors and a lawmaker who are fighting to end the Black maternal health crisis.
Congress is expected to resume conversations about the Black Maternal Health Momnibus Act and its contents when lawmakers return from recess this fall.
However, doctors who have been on the frontlines of the crisis say the solution is more than just legislation. They say the health care system needs to address the implicit bias and racism that has led doctors to ignore Black women’s pain and suffering. Studies show that Black people are systemically undertreated for pain compared to White people because of racial bias. Research also points to a belief among some White medical professionals that Black bodies are biologically different and can endure more pain than White bodies.
Dr. Rasheeta Chandler, assistant professor at the Nell Hodgson Woodruff School of Nursing at Emory University, says addressing the maternal health crisis will require doctors and providers to reimagine how they care for Black mothers. Chandler suggests what she calls an “immersive” strategy where hospitals partner with Black and brown communities and send their staff out to meet with women who have concerns about pregnancy and childbirth. This strategy will help with cultural barriers as well as building trust, she said.
“I think we are on track if we can get something passed. If we keep sitting on our hands, and twiddling our thumbs, and having these debates while real people are having real problems and need real help, then nothing gets done. So yes, I think there is potential for there to be a huge impact, but that’s only if lawmakers do their job, and move these bills forward that can help the American people and particularly Black women who are dying in childbirth or after childbirth.”
Chandler is also urging lawmakers to pass legislation that will protect Black moms, saying laws determine how public money is spent and whether marginalized groups have access to health insurance. A lot of Black maternal health legislation has been held up or never passed, and that is part of the problem, she said. For example, a different version of the Black Maternal Health Momnibus Act was introduced in 2020 by Adams, Underwood and now-Vice President Kamala Harris when she was a Senator but progress stalled.
As a mother and grandmother, Rep. Alma Adams says the fight to get Black maternal health legislation passed is a personal one. The North Carolina representative co-sponsored the Black Maternal Health Momnibus Act, and in May she was able to get The Protecting Moms Who Served Act — one of 12 bills included in the package — passed in the House. The Protecting Moms Who Served Act seeks to eliminate maternal mortality, morbidity and disparities among veterans.
“We have all kinds of testimony from women who tell us that they are basically being ignored. Their pain is not considered to be something that’s important to doctors primarily because they are Black women. It doesn’t have anything to do with how much insurance you have, or how well off you are. It’s about the attitudes and the preconceived notions about Black women and pain.”
Adams says the nation faces a serious issue with bias in the health care system and most maternal deaths are preventable. She says it is critical that lawmakers pass legislation to protect Black mothers and is confident the Black Maternal Health Momnibus Act will eventually make it to President Joe Biden’s desk and get signed. Adams co-chairs and co-founded the Black Maternal Health Caucus.
Borer Nelson, now 34, feared she would become another statistic.
Since 1987, the rate of pregnancy-related deaths in the US has steadily risen over the past three decades according to the CDC. Black women are three times more likely to die from pregnancy complications than white women, according to the CDC.
A Blue Cross Blue Shield study revealed that Black women experience childbirth complications at a rate three times higher than White women. Black women under the age of 24 are also more likely to experience severe childbirth complications than White women over 35, the study found.
“Between March and early April, I went through a very traumatic moment when I was in the hospital and I thought I was going to lose my life due to Covid and being treated unfairly because of the color of my skin. I was in the hospital and they weren’t listening to me about my needs and how I was feeling.”
“My (unborn) baby’s heart rate was going up because they weren’t listening to me,” she says. “And it was just a scary, scary experience. Her heart rate got up to 170.”
Dr. Joia Crear Perry, president of the National Birth Equity Collaborative, said advocates for Black maternal health are calling for a “White House level response” to the crisis. Perry says she wants Biden’s administration to create an office that focuses on sexual reproductive health and well-being and gives special attention to the disparities Black birthing mothers face.
“Very rarely do patients who are Black have a baby and come out and say ‘man they really treated me like I was a queen.’ They are most likely to tell you stories of harm and disrespect and they are just happy they survived it. The goal should not be that they are just happy that they survived, the goal should be that we are excited for all people that want to have a baby and invest in them and see them as valuable.”
Too often lawmakers focus on “little tweaks” such as extending or expanding Medicare when Black mothers with private insurance are also facing racism, Perry says. She wants to see more culturally congruent health care providers who prioritize hiring Black physicians and nurses.
Perry said the recent surge in Covid-19 cases has made her particularly concerned about Black mothers who already face barriers to health care access. In states such as Louisiana — which has one of the worst maternal mortality rates in the nation and is currently leading the US in new Covid cases per capita — Black mothers have to worry about getting the proper care in an overwhelmed hospital system, she says.
“Add on a pandemic with ICU beds being full and hospitals being overstretched, you’re going to see more people slip through the cracks,” Perry says.
Adenike Chon first held her son, Kiko, a month after he was born. He was born at 25 weeks and smaller than a can of soda. Fighting back tears, Chon vividly remembers the day her water ruptured and she said a doctor advised her to abort her unborn son, Kiko.
“They told me I was young, newly married and could try again,” she tells CNN.
After he was born, Chon says a White nurse refused to listen when Chon says she wanted her son’s primary physician to vaccinate Kiko. Chon made the request because the nurse was ill. Instead, that nurse ignored the mother’s request and vaccinated Kiko when Chon left the hospital. After the nurse administered the vaccine, she accidentally stuck herself with the needle she used to vaccinate Chon’s son, which led to a blood transfusion.
“Because she made a stupid mistake, they needed to verify that Kiko was HIV negative. He had to have five cc's of blood taken, and that five cc's of blood kept him in the hospital an additional month because his hemoglobin was then low and he was unable to be off of room air,” Chon said.
“He ended up having to get a blood transfusion. They had to put a PICC line in him, the PICC that they gave him they had to put it in his head. He still has a scar on his hairline.”
“My youngest son was born at 25 weeks, four days, at one pound and 12 ounces. He was smaller than a can of soda. My son endured an unnecessary blood transfusion because a nurse did not listen to us. I believe their racism had some part to play in almost killing my son and killing me during our birth story.”
Kiko spent 87 days in the hospital after he was born. At times, Chon, who described her son’s skin as paper thin worried he wouldn’t make it through the night. Kiko turns 13 this month. He also lives with hydrocephalus and depends on a wheelchair to get around. It is a condition causing excess fluid to build up in the brain.
“If doctors … and nurses would just take a moment to step back and treat Black women the same way that they would want somebody to treat their mothers and their sisters and their daughters, then I think that would be a good first step.”
Natalie Hernandez, the interim director of Morehouse School of Medicine’s Center for Maternal Health Equity, blames racism and discrimination for the poor health outcomes many Black moms face. She says Black women experience a “collective, emotional assault” when receiving maternal care that reflects the structural inequities that Black Americans have faced for generations.
“We need to imagine health care in a different way. We’re thinking of these Band-aid solutions, ‘oh if providers get this training on racism, they’ll be OK.’ Other countries get it right. We need to trust Black women, we need to hear Black women. We need to go back to the days where our villages were together birthing and being with one another. And those social support systems that are so broken right now because of all of the other issues we face in our community like violence and poverty. All of these things that have broken these once lively systems that were very protective factors in our community.”
Health care bias, Hernandez says, is only part of the problem for Black women. Many moms struggle with access to basic needs such as housing and food that make pregnancy and childbirth even more challenging, she says. Lawmakers should consider the policies that will help remove these barriers, she adds.
A recent study funded by the National Institutes of Health suggests that racial and ethnic disparities in maternal mortality in the US may be larger than previously reported.
Researchers reexamined information on death certificates from 2016 and 2017 and “found that the maternal mortality rate among non-Hispanic Black women was 3.5 times higher than among non-Hispanic White women. Previously, standard analyses had indicated a 2.5-times-higher death rate for Black women.”
Brittany L. Wright said she started convulsing and lost the ability to speak on the day she became a mother in October 2018. At the time she was married, and her husband yelled for a nurse to come in. It wasn’t until she could no longer speak, that the staff listened to her husband. When she first arrived at the hospital, Wright said racism met her at the door.
“I experienced racism in the medical system many times during my labor, delivery and postpartum experience, even until this day. The first major experience was [in delivery] when I told the nurses something was wrong, and they didn’t believe me until my body started convulsing and lost the ability to speak and advocate for myself. It wasn’t until I got a fever and I started convulsing that I got the medical attention that I needed. At my six-week postpartum checkup, I was told that everything checked out fine despite the complications I had during delivery, but I experience complications two and a half years later, and my medical doctors haven’t given me an explanation as to why.”
In the first year after her daughter, Zora, was born, Wright said she was seen more than 50 times by a doctor due to postpartum complications. She has turned her pain into purpose. Her testimony in front of Minnesota lawmakers led to new laws this summer. The Dignity in Pregnancy And Childbirth Act, which was signed into law in June, now requires continuing education for obstetric care providers on racism and implicit bias. In addition, it will expand the Minnesota’s maternal health research on how to keep Black moms safe during pregnancy, childbirth, and postpartum Wright said. All Minnesota hospitals must have training complete by the end of 2022.