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For the longest time, when Alea Lovely thought about birth, she also thought about death.
She feared getting her first period. She feared getting pregnant. She feared she would bleed out in a delivery room and die. She feared that every landmark that was supposed to be empowering and beautiful would come at a price.
“Since I was 10 I said, ‘I don’t want to have kids because I don’t want to die,’” said Lovely, a 38-year-old podcaster who works out of her home in South Kansas City. “If there was a fear of giving birth, then I had the phobia.”
Then two years ago Lovely found a man she wanted to create life with. She got pregnant. She spent three painful days in labor before being told she needed a cesarean section.
Lying on the table being prepped for surgery she told the doctor she was scared she would die.
An hour later, she nearly did.
Lovely came close to becoming a fatality statistic. The United States has the highest maternal mortality rate among developed countries in the world, and it’s getting worse despite efforts to reduce it.
Lovely knew that as a Black woman, the odds were stacked against her. Black women in the United States are three times more likely to die from a pregnancy-related cause than white women.
Missouri, where Lovely had her baby, has had one of the highest maternal mortality rates in the country for years — the 12th worst in the nation. Kansas ranks 17th worst.
“If you’ve never been through that, if you’ve never had your life flash before your eyes, or have a moment where you think, ‘I’m slipping away,’ there’s no way to describe it to anyone else and have anybody see you for that moment,” Lovely said.
Community advocates, health care providers and lawmakers are frustrated with mortality rates that remain stubbornly high, knowing that 80% of pregnancy-related deaths are preventable, according to Centers for Disease Control and Prevention data released last month.
“We’re in a maternal and infant health crisis in this country,” said Elizabeth Lewis, director of maternal and infant health for the March of Dimes in Kansas City. “We live in one of the most dangerous, developed nations to deliver a baby in, and the rates of maternal mortality have been increasing in the last two decades.
“With all our advances and science and medicine, we expect them to be decreasing. But instead, in our country, they are increasing. And a lot of that is a story of access and disparities.”
Between 2017 and 2019, 185 Missouri women died while pregnant or within one year of pregnancy, according to the latest report from the state’s Pregnancy-Associated Mortality Review board.
But maternal mortality rates are what one federal health official once called “the tip of the iceberg.”
Because while 650 to 700 people die of pregnancy-related problems every year in the United States, 50,000 to 60,000 women like Lovely suffer severe complications that can lead to short- or long-term health problems. The medical community calls these cases severe maternal morbidity. Those who almost die? “Near misses.”
Here again, the odds are against women of color: Black mothers insured by Medicaid are about two times more likely than white women on Medicaid to become cases of severe maternal morbidity, the CDC says.
“For many, many years, we rightfully have focused on infant mortality, and there have been a lot of alarm bells raised around that,” said Tracy Russell, executive director of Nurture KC, a nonprofit that supports pregnant parents in the 14 ZIP codes with the metro’s highest infant mortality rates.
“Well, we’ve made strides in that area, but I think simultaneously we’ve had so much going on with mothers and their health that there wasn’t an emphasis on that until recent years.
“It’s almost like we treat pregnancy as though, well this is just a time for celebration, which it is, but not looking at the trauma on the body and the mind that can occur during the course of pregnancy and parenthood.”
A Nurture KC study found that for every case of maternal mortality in Kansas City, there are 70 instances of severe maternal morbidity. And even those numbers might not be accurate, Russell said, echoing a concern others have that national morbidity statistics are lower than reality.
The Missouri Hospital Association, based in Jefferson City, is gathering maternal morbidity data from across the state, “trying to understand what some of those key issues are so we can design and develop intervention,” said Alison Williams, vice president of clinical quality improvement for the group.
“A lot of times people look at the number of mortalities and think, ‘that’s not a lot of people,’” said Williams. “But when you’re talking about even one individual’s life and who that person is to their family and to their friends, it’s a big deal, whether it’s one or 2,000.
“And then morbidity, those numbers are clearly much larger. I think that’s something that’s probably not as widely recognized.”
But solutions remain clear, experts and studies say, if only the state and health care providers would act on them as other states have. They include:
▪ Expand Medicaid, as Kansas has, to cover a full year after pregnancy, a time when complications can be abundant.
▪ Better train medical staff to listen to patients, especially those of color, and not dismiss their concerns.
▪ Offer more and better mental health care, so mothers have the wherewithal to take care of themselves and their children.
▪ Provide funding and insurance coverage for doulas, birth centers and community health workers, whose support for patients, studies show, improves the health of mothers and babies.
She met a man she loved
In the summer of 2020, as protests raged over the murder of George Floyd by a Minneapolis police officer, Lovely decided to get on Bumble. Not to find a date, but to check on the Black men in her community.
She came across David Jones’ profile and sent him a message.
“Hey king, how’s your heart?” she asked.
A coffee meet-up turned into an hours-long conversation as they walked around downtown Kansas City.
They’re both fascinated with Cairo, in Egypt. Their birthdays are one day apart. Three weeks in, they said “I love yous.”
“This is it,” Lovely realized.
For the first time in her life, despite being at higher risk as a woman of color, she considered having a baby.
On their first try, the pregnancy test came back positive.
Medicaid is key
Because of the pandemic, Lovely’s main source of income — wedding photography — dried up. So she signed up for Medicaid. In the United States, 40% of all births are covered by Medicaid.
The Affordable Care Act broadened Medicaid to cover more Americans — nearly all adults with incomes up to 138% of the federal poverty level. But states must opt in.
Thirty-eight states and the District of Columbia have expanded Medicaid, according to the Kaiser Family Foundation.
Missouri has done it, thanks to a statewide ballot initiative; Kansas has not.
But one thing Kansas has done is take advantage this year of federal COVID-19 funds to help mothers postpartum, extending Medicaid coverage from just 60 days to up to a year after the baby is born.
More than half of pregnancy-related deaths in Missouri from 2017 to 2019 happened between 43 days and one year postpartum, according to the latest Pregnancy-Associated Mortality Review board report.
Similar committees in dozens of states have concluded “these deaths are often preventable,” researchers at Georgetown University’s Health Policy Institute wrote last year. “This suggests that improving access to care during this critical period could be lifesaving for new mothers.”
But some states, including Missouri, only continue pregnancy-related Medicaid coverage for 60 days after childbirth.
Last session, Missouri lawmakers failed to pass bipartisan legislation that would have extended the care to a full year. With abortion now almost entirely banned in Missouri, some lawmakers have pointed to a need to pass such legislation.
The proposal was viewed as a rare point of agreement for both sides of the abortion debate — with endorsements from Planned Parenthood and the anti-abortion group Missouri Right to Life. But the legislation faltered amid resistance from some hard-right Republicans.
“Missouri has some of the highest rates of maternal mortality, especially for Black women, and we have been raising the alarm,” said state Rep. Maggie Nurrenbern, a Kansas City Democrat. “I feel like it’s been falling on deaf ears because the vast majority of Missouri legislators are older, white men, and it’s not impacting them the way it is those in our communities.”
However, state Rep. Doug Richey, an Excelsior Springs Republican, said helping women postpartum is challenging for state lawmakers.
He referred to 2018 data from a recently released report from the Missouri Department of Health and Senior Services that, among other findings, found that substance use disorder contributed to 54% of pregnancy-related deaths.
“We’re dealing with behavioral characteristics and decision making on the part of others,” he said. “It’s disturbing — you don’t want to see a high mortality rate at all. But it’s really hard for the state to help women make the right choices.”
But such thinking ignores how systemic barriers to health care, and lack of providers and insurance, often block access to the help, such as mental health services, that could keep these patients alive.
A report released last week by the March of Dimes — “Nowhere to Go: Maternity Care Deserts Across the U.S.” — amplified the growing lack of access to maternity care in Missouri and across the country, especially in rural areas. The report tagged 36% of all U.S. counties — 1,119 — as maternity care deserts, including, near Kansas City, Miami and Linn in Kansas and Bates in Missouri. That’s a 2% increase since the last report in 2020, driven by the closure of hospitals and maternity care units and fewer OB-GYNs.
No one’s listening
Many patients like Lovely who are pregnant or postpartum — especially women of color — feel ignored or dismissed when they voice concerns. So some hesitate to ask questions. When a patient doesn’t speak up, a health care provider can miss warning signs.
“I think the major challenge is not being heard. We often hear that they are not being listened to. When there is a concern, they’re being told it’s normal until it’s not normal,” said researcher Sharla Smith, founder of the Kansas Birth Equity Network and associate professor in the population health department at the University of Kansas Medical Center
“The overwhelmingly negative birthing experiences, I hear mothers say I dare not have another child. (We’re) not hearing enough success stories.”
Smith had a hand in getting signs posted around the labor and delivery department at KU Medical Center to remind staff members to do one simple thing: Listen to the patients.
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The Kansas Birth Equity Network has launched a two-year fellowship program to train physicians to care for diverse patients. Two family medicine and three OB/GYN residents began participating in March, which includes volunteering with community organizations “to really learn the community they will provide care to, to really get it closer to them because they don’t get that within medical education or oftentimes during their residency,” said Smith.
At a national level, the CDC recently launched a campaign called “Hear Her,” which encourages health care providers, family and friends to listen when a patient says something is wrong during and after pregnancy.
Locally, The Kansas City Health Equity Learning and Action Network launched an effort in January to train health care workers on racial and ethnic disparities.
But these programs touch only a fraction of the health care community, and much work remains.
Before her doctor’s appointment, Lovely spent extra time getting ready, expecting to be judged because she was on Medicaid. Hoping to be taken seriously.
Her pregnancy was difficult. At 36, and with fibroids, preeclampsia and gestational diabetes, she was high risk.
At 12 weeks she was concerned and went to a local clinic hoping to get an ultrasound. But the clinic turned her down, saying it was too early in the pregnancy and telling her to come back at 20 weeks.
She wondered: “Am I getting the Black girl treatment?”
She went to Planned Parenthood instead.
Weeks later she felt something was wrong. Mother’s intuition. But the first doctor she told wrote her off, she said, and wouldn’t follow up.
So at 20 weeks she transferred her care to University Health. Doctors there told her there was a complication with her baby girl’s umbilical cord and she would have to have weekly ultrasounds.
A cascade of questions flooded her brain with the improved care she was finally starting to get.
“Just to have the mental clutter of, ‘Am I getting the same treatment as someone else?’ That part is so hard — especially as a woman of color, especially as a Black woman,” she said. “Am I getting the same treatment as someone else? Should I be questioning this more? Is this actually the procedure?
“I don’t feel like someone’s actually answering my questions. Someone’s not looking into something. I’m not getting the kind of treatment I need for my pain.
“Just getting someone to listen to you and actually do what you’re asking … there’s just so much red tape.”
University Health officials said federal patient privacy laws prevented them from discussing Lovely’s case, but said in a statement, “We take maternal health, including postpartum depression VERY seriously.”
“We are one of very few hospitals with a psychologist embedded in our OB Clinic, and quick access to two psychiatrists on staff who specialize in maternal mental health,” the hospital said.
“We are also constantly innovating to help moms connect with professionals and each other — including recently implementing ELEVATE (tailored toward women of color but available to everyone), providing support, information, and a sense of community for moms-to-be.”
Other women say they learned about a hospital’s lack of communication years after they gave birth. Daysha Lewis of Kansas City said it wasn’t until five years after her she had her first child, when she was struggling to conceive again and requested her medical records, that she learned she almost died in childbirth after her placenta wasn’t fully delivered.
Lewis, who has since become a local birth worker, passed out shortly after delivering. Then she blacked out again. Later, after undergoing a whirlwind of procedures, she said they told her simply that she’d had some bleeding and that they stopped it. Years later she learned she’d had a severe postpartum hemorrhage as they removed her placenta.
“They really dumbed-down the fact that I almost died,” she said. “They didn’t even accurately tell me what happened.”
Now she shares her story widely to advocate for more women to learn what happened to them. She said knowing what happened helped her heal, but it’s healing she wishes she could have instead done postpartum.
“My story is not special. It is not unique,” Lewis said. “On some levels, this is the norm to so many women.”
Countless women have similar near miss stories, and they’re sharing them, said Hakima Tafunzi Payne, founder of Uzazi Village, a nonprofit created to better support Black parents and babies. These stories only instill more fear and distrust in the health care system, which can lead to people waiting longer to get care, she said.
“When hospitals refuse to have open, clear, transparent communications with communities about this, they put themselves in the position of being demonized in these stories,” she said. “And they keep themselves from finding solutions when there’s this cloud of secrecy and they’re only discussing it internally.”
Being pregnant is stressful
In a recent study called “I Just Want Us to Be Heard,” researchers studied 31 women of color in Ohio who described the high stress of having a baby. Many talked about their mental health. One said she was too depressed to get prenatal care.
“With this pregnancy, I’ve been really more depressed than usual. … I’ve been having trouble keeping up with appointments and stuff. … It’s just like a mental thing, I just didn’t feel like it. Getting up and going to these appointments. That’s the part that was hard. Trying to wind myself up to do what I need to do has been a problem.”
Mental health is, in fact, the leading cause of maternal mortality across the United States and in Missouri and Kansas, where a lack of mental health care providers exacerbates the problem.
A new report from the nonprofit Mental Health America ranked Kansas worst among states for its high prevalence of mental health issues and low access to mental health care. Missouri ranked 39th.
“Mental health is our biggest issue of death, including substance use,” said Williams, who serves on Missouri’s Pregnancy-Associated Mortality Review board.
“What we see a lot is not only depression but also anxiety, a lot of anxiety, especially with the pandemic. … We also see bipolar disorder not being well managed in pregnancy, and that’s a challenging mental health disorder to manage anyway, and when you add all of the physiological changes of pregnancy, it really becomes even more complex.”
Several of the women in the Ohio study said they had anxiety and/or depression before they got pregnant and worried about discontinuing their medications; some had been warned by their health care providers that their mental health would get worse during pregnancy.
Others said health care providers made their mental health worse. Postpartum depression was a common complaint.
Ashley Walburn, a mother and a birth worker for 20 years now, has seen it happen as a trauma therapist at Home Holistic in Overland Park, focusing on new mothers and families.
“Did I feel safe even though things did not go the way I wanted them to? Were my choices supported? Did anybody even ask for my consent?”
These are some of the questions her clients work through.
“If they feel safe and supported and communicated well with, they come out feeling empowered instead of traumatized and terrified.”
“It happened because they felt overwhelmed instead of supported, or over-managed by their practitioners instead of listened to and empowered and supported.”
She said everyone involved with the pregnant patient should have trauma training. One hospital just hired her to do that training for every nurse, she said, so every mother feels safe.
“We don’t just have a beautiful room for you to birth in, but we have a safe space for you to birth in.”
As a result, she said, mothers can suffer long-term from depression, low milk supply, relationship issues with their baby and family and low self-esteem as a mother.
She said when a provider doesn’t seem to trust the woman, the mothers “don’t trust themselves to raise their children, to mother.”
They’re also more likely to be dissatisfied with other care and distrust other providers in the future.
A solution: Doulas having a moment
Part of a doula’s job is to quiet a pregnant client’s mind, find answers to questions like the ones that stressed Lovely.
They’re trained professionals who provide physical and emotional support, and information, to clients before, during and after childbirth. Unlike midwives, who can deliver babies, they do not provide medical care.
As the maternal health crisis rages, the services of doulas and other birth workers have become widely recommended as a way to battle deep-seated disparities encountered by women of color.
Earlier this month, Blue Cross and Blue Shield of Kansas City, and BioNexus KC awarded a $50,000 grant to Dr. Angela Martin at KU Medical Center to research how doula care can reduce health problems among pregnant Black patients.
Martin and her colleagues will screen them for factors that increase their risk of a complicated pregnancy. Some of the patients will receive standard prenatal care; others will get doulas.
Nurture KC has also launched a pilot program to provide doulas to 25 high-risk women.
“I think that’s really the next frontier if we are serious about women’s health and infant health because having that support system and an advocate, it will improve outcomes, and we’ve seen that happen elsewhere, and that would be an incredible step forward if Missouri and Kansas as well would look at that issue,” said Russell of Nurture KC.
Studies show that pregnant women who have doulas at their side have fewer babies with low birth weights and fewer C-sections.
But there’s a hitch. Doula services are not always covered by Medicaid or private insurance, but lawmakers in other states are changing that.
Last year saw an “abundance” of state bills introduced for Medicaid coverage for doula care, reported the National Health Law Program. which is tracking that legislation.
By the end of 2021, only a handful of states had either begun reimbursing doula services through Medicaid or started to implement doula coverage laws. Missouri and Kansas were not among them, according to the legal group.
Nadah Cartmill has been a birth doula in the Kansas City area for 25 years, attending nearly 1,000 births from hospitals to birth centers to home births.
She sees the lifelong repercussions from births where the woman isn’t listened to, even if mother and baby do ultimately leave the hospital healthy.
“I find that women, no matter how they end up giving birth, if they feel heard along the way, they’ve been presented what their options are or the reasons for wanting to do something to them during their labor and birth, and they can make a truly informed choice, no matter how they give birth, they still have a sense of satisfaction and being empowered at the end. But it requires their voice be heard.”
And when a birth is traumatic, she said, follow-up care is necessary.
“A healthy mother is going to have a healthy family,” Cartwell said. “If she’s suffering, then the whole family is going to suffer.”
In April, as part of a resolution recognizing the five-year anniversary of Black Maternal Health Week and declaring April 11 as Day of Black Doula, dozens of women gathered in front of city council members. Many were doulas trained by Payne, affectionately known by many as Mama Hakima. In addition to her work at Uzazi Village, Payne is also a member of the city’s Birth Equity Committee.
“We’ve been fighting for decades to get this recognition because these numbers are not new, and they’re actually getting worse,” she told those gathered at City Hall.
Counting baby’s kicks
Marcela Metcalf sees that big picture every day.
As a lead community health worker at Nurture KC, Metcalf helps expectant and new mothers from the 14 poorest ZIP codes in the metro access the care and knowledge they need to thrive.
On a recent crisp fall morning at Nurture KC’s midtown office, Metcalf spoke with Fabiola Irias, a mother of three with a fourth baby on the way. Irias held her hand to her round belly as they sat together, a shelf stacked high with free diapers behind them. A poster above them read “Papas Bienvenidos” — Welcome Fathers.
Metcalf spoke with Irias, who is expecting a girl in December, about asking for plenty of time to hold her baby, skin to skin, at the hospital to help with breastfeeding.
They talked about counting the baby’s kicks in the third trimester as an easy way to track early warning signs of trouble.
Irias, who recently moved to the United States, is without a car, so Nurture KC arranges for a taxi to bring her to and from her monthly appointments. On a recent Wednesday she left with a new diaper bag, one of the first gifts for her new baby.
Before she left, Irias embraced Metcalf, tears filling her eyes. She’s never felt so supported in a pregnancy before, she said.
Irias is one of more than 40 families Metcalf works with through Nurture KC’s federally funded Healthy Start program, meant to help the most at-risk families.
Part of the program teaches how to keep sleeping babies safe.
Staff members visit mothers and their newborns at home when they ask for the extra support in the 18 months after giving birth. They help them navigate postpartum depression, sign their baby up for Medicaid, find food and clothing banks, even connect them with immigration lawyers. But more than anything Metcalf is someone families can talk to, face to face.
“If most moms can have somebody that visits and provides information where they are, I think that is key,” Metcalf said.
In a perfect world, she added, every new family would have postpartum home visitations if they wanted them.
Coordination of efforts is key, too, said Williams. In Missouri many groups were addressing the same health problems but not always sharing information, which is why the hospital association set up networks to focus the work.
There is power, Williams said, in “connecting people across the state who had no idea there is this massive amount of work going on, for instance in the Bootheel, around supporting moms and babies, and drawing attention to things that people don’t even know are problems in their own neighborhoods or resources in their own neighborhoods.
“It’s been really effective and powerful and we still have a long way to go. But I think it’s been a real opportunity to (pull together) a lot of efforts and raise them to the top so others can learn from them, duplicate them or join them, whatever makes sense.”
She almost died
At 38 weeks, Lovely’s doctors recommended they induce her. She hesitated but ultimately agreed.
They fed Pitocin into her veins, and for three days she labored without making much progress. A failed first epidural to ease the pain led to a second.
When her baby’s head started to swell, the doctors said it was time for a C-section.
Her lifelong fears of postpartum hemorrhage started playing out in front of her.
In the U.S. between 2017 and 2019, 14% of maternal deaths were the result of postpartum hemorrhages, according to the CDC. It was the second leading cause of pregnancy-related death, after mental health.
“I’m afraid I’m going to die on the table,” she told the doctors. “I’m afraid I’m going to hemorrhage and that I’m going to die and I’m not going to get to meet my kid.”
They reassured her that all would go well.
Soon, doctors were holding up her tiny bundle with a head full of hair. She and Jones took pictures with their daughter. Then, as they took her baby away to clean up, she heard an urgent voice.
“Her BP is dropping. Prepare the blood transfusion bags.”
“I’m like, ‘Oh my God, I’m dying, like, I’m about to die. I’m not going to get to meet my kid.”
She woke up moments later to her partner yelling her name.
As she faded in and out of consciousness, Lovely said she felt like she was in a cloud.
She came to again and heard someone talking about her bleeding. She felt them packing her with gauze, a memory that makes her nauseous. They sewed her up and kept her hospitalized for three more days.
Lovely and Jones took their new baby home.
“And the real healing process starts,” she said. “And it’s just crickets.”
No resources, no help
Lovely, creator of a podcast called Spiritual Shit, faked business as usual as her internet community oohed and aahed over her beautiful baby.
But inside, Lovely was struggling.
“There was no structure in place, no template in place to take care of the mother afterwards. I think that’s incredibly important. … You’re giving life. Why don’t we have more respect for mothers? Why is this just seen as just something we do and we’re not these goddess portals that should be respected and honored.”
For the latter part of her pregnancy, Lovely had to go to the hospital once a week.
Her first appointment, post-delivery, wasn’t for six weeks. Until then, she was on her own.
She endured terrible bleeding when her period came again, passing out at home from a loss of blood, probably because of the fibroids.
She did have a postpartum depression hotline card somewhere in the barrage of paperwork, but she was tired and unfocused, not sure where the paper was if she wanted it.
On a recent Wednesday, Lovely sat beside her partner in their cozy, recently renovated home.
They watched their daughter teeter around the room as, outside the windows behind her, fall leaves began to drop. Lovely calls her daughter a force and a light. A smiley baby who speaks in babbles and giggles.
But even 17 months later, Lovely still has difficulty reliving the day they met.
She struggled to understand why she had to go to the hospital every week for the latter part of her pregnancy to check on the baby’s health and progress.
“But when giving birth and having a major surgery, no one checks to see if I’m OK, mentally, emotionally, physically,” she said. “I was in the most pain I’ve ever felt.”
“I’m not doing OK. You might not be able to see that something’s wrong, but I’m not doing OK.”
She said after her traumatic birth, she felt a sense of unfairness. She felt isolated. All her white friends had good births. It left her wondering if she got treated this way because of her race.
“There could be a lot more prevention happening if there was a lot more listening.”
The Star’s Kacen Bayless contributed to this report.
Get involved
Here are groups helping families in need and working on causes related to maternal health care, including Medicaid expansion. They welcome donations or volunteers.
▪ Nurture KC: nurturekc.org
▪ March of Dimes: #BlanketChange campaign. Marchofdimes.org
▪ Happy Bottoms: happybottoms.org
▪ Uzazi Village: uzazivillage.org/volunteer
▪ Project Gabriel: gabrielprojectkc.com/donate/material-donations
▪ Alliance for a Healthy Kansas: expandkancare.com
▪ First Thousand Days in Kansas: first1000daysks.org
Anna Spoerre covers breaking news for the Kansas City Star. Before joining The Star, she covered crime and courts for the Des Moines Register. Spoerre is a graduate of Southern Illinois University Carbondale, where she studied journalism.
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