When a woman dies during pregnancy or within a year of childbirth in Illinois, that's considered a maternal death. Karen Tabb Dina reviews cases like this in the state of Illinois. She's a maternal health researcher at the University of Illinois at Urbana-Champaign who serves on a state-level committee that's trying to figure out what's causing these mothers to die.
The group's most recent analysis found that about 75 women in Illinois die from pregnancy-related causes each year. Consistent with national trends, Black women are at greater risk than white women, and the vast majority of the deaths were preventable.
The U.S. is the only industrialized nation where the maternal death rate is rising. Each year, 700 women die due to pregnancy, childbirth or subsequent complications, according to the U.S. Centers for Disease Control and Prevention.
"It's cause for alarm," Tabb Dina says. "Our country is in a crisis, in terms of unnecessary maternal deaths during pregnancy."
In recent years, Illinois' Maternal Mortality Review Committee has urged policy changes that would remove barriers to health care for pregnant and postpartum women. At the top of the list: Make sure low-income moms enrolled in Medicaid don't lose that coverage after their baby is born. Currently, some women can lose that coverage as soon as 2 months after giving birth.
Last month, Illinois became the first state to get approved by the U.S. Department of Health and Human Services to extend Medicaid for up to a full year after a pregnancy.
"This is tremendous," Tabb Dina says. "One of the greatest risk factors for maternal deaths is lack of access to care: not being able to access the right providers and to be seen in a timely manner."
In the U.S., mothers enrolled in Medicaid during pregnancy lose that coverage 60 days after giving birth if they surpass income limits set by their state. As a result, hundreds of thousands of women who've recently had a baby end up uninsured each year.
"Disruptions in Medicaid coverage results in higher costs and worse health outcomes," HHS Secretary Xavier Becerra said in a press briefing in April, citing a federal report on the consequences of Medicaid churning. "More than half of pregnant women in Medicaid experienced a coverage gap in the first six months of postpartum care."
With the extension of Medicaid, mothers in Illinois with incomes up to about double the federal poverty level can keep their coverage for 12 months postpartum. Several other states — including New Jersey, Georgia and Virginia — are taking similar steps.
Although the $1.9 trillion American Rescue Plan was passed in the wake of the pandemic to stimulate the economy, it also contains a less-noticed provision addressing the postpartum coverage. Experts hope it could spur more states to join Illinois in expanding Medicaid coverage.
For the 12 states that never expanded Medicaid at all under the Affordable Care Act, the law provides new financial incentives for them to make Medicaid available to all adults with incomes up to 138% of the federal poverty level ($12,880 for an individual, $21,960 for a family of 3).
In addition, the stimulus package offers all states an easier option for extending postpartum Medicaid coverage beyond the 138% income limit. Starting in April 2022, states can simply file a State Plan Amendment to their Medicaid program — a process that has fewer roadblocks to federal approval, compared with the traditional route of applying for a federal waiver.
Why extending Medicaid could help reduce maternal mortality
Maternal health experts says extending Medicaid coverage to a full year postpartum makes sense because pregnancy-related complications — both medical and mental health issues — aren't limited to the first few months.
"Many [postpartum] health issues and health problems extend beyond the 60-day period that Medicaid is currently covering," says Dr. Rachel Bervell, an obstetrician in Seattle and co-founder of the Black OBGYN Project, which aims to raise awareness about racial injustices in maternal health care.
One research paper published in 2017 estimated about 13% of maternal deaths in the U.S. occur between six weeks and one year postpartum. But a different report from a year later, based on data from nine states' maternal mortality review committees, found the proportion of pregnancy-associated deaths that happen between 43 days and one year postpartum is closer to 20%. This data point includes deaths not directly caused by pregnancy or childbirth.
Bervell clearly recalls the first time she learned about that statistic.
"It was just so jarring," she says. "It makes you worried about the 1 in 5 individuals we may be missing."
Medicaid is the largest payer for maternity care in the U.S. Black women are overrepresented in the Medicaid population, so they're also overrepresented among those who get kicked off their plan after 60 days.
Chronic diseases — like diabetes and hypertension — are more prevalent and less well-controlled among Black women, putting them at higher risk of pregnancy-related complications.
There are also structural barriers to health care, such as transportation, childcare issues and inadequate housing. Many of these barriers stem from racist and discriminatory policies, like redlining, which have been linked to worse health outcomes. Black mothers are also more likely to be denied medication for postpartum pain management.
Racial disparities in maternal health outcomes are caused by racism, not race. So the problem can't be solved, Bervell says, without addressing systemic racism in both medicine and the broader society.
U.S. Representative Robin Kelly, a Democrat from Illinois, says the racial disparities in maternal health outcomes are unacceptable. She championed the state's Medicaid change and is working on other policies that would improve maternal health data collection and establish national obstetric emergency protocols.
"When you look at educated Black women with money, they still die more than less-educated, less-wealthy white women," she says.
Kelly says she first became aware of the issue several years ago, when she met the family of Kira Johnson, a Black mother who died after the birth of her second child from obstetrical bleeding — one of the most common causes of maternal death in the U.S.
"I'll never forget, her oldest son walked in and saw a picture of his mother on the screen. And he said, 'There's Mommy.' And that just got to me," Kelly says. "What a heartbreak when you consider something that's one of the happiest days of your life, and then a family is torn apart."
Learning from the "near misses"
As the rate of maternal deaths in the U.S. has ticked upward, so has the incidence of "severe maternal morbidity," according to the CDC. Each year, an estimated 50,000 women experience health complications that are dangerous, even life-threatening.
Jessica Davenport-Williams, a mother in Chicago, says after her first birth, she hemorrhaged severely and had to receive blood transfusions.
When Davenport-Williams got pregnant with her second daughter, it was right around the time that Serena Williams and Beyonce were in the news because of serious complications they experienced during pregnancy and childbirth.
So she educated herself about how to advocate for herself in medical settings and became adamant that her health records clearly state her blood type to ensure reserves would be available when it came time for her scheduled C-section. But she says she experienced pushback from her prenatal care doctors.
"I wanted to make sure that every physician was well aware of my history, that they documented information in my file that would be transferred to the hospital. And I was met with resistance, quite honestly," she says. "They didn't feel that it was necessary. I had to push for several appointments for that to happen."
After her second daughter was born via C-section, Davenport-Williams hemorrhaged again.
"It became an emergency situation," Davenport-Williams says. "It just reminded me that I could have been one of those cases that the Illinois Department of Public Health read about, that I [almost] didn't make it."
Davenport-Williams says her experience with postpartum complications compelled her to become an advocate for maternal health, because even having knowledge of the risks, health insurance and an income above the poverty level didn't protect her from being met with resistance from medical providers.
"I don't know if I will see the change for myself, in my lifetime," she says. "But I definitely don't want my daughters to have the same story or experiences that many before them have had."
When mothers lose their health coverage and experience chronic medical or mental health conditions, they're less likely to access treatment before they're hit by a crisis, says maternal health researcher Tabb Dina.
Tabb Dina says she's most alarmed by the growing number of new mothers arriving in the ER after a suicide attempt or drug overdose. In Illinois, these mental and behavioral health issues are now the leading cause of maternal death.
"The emergency department is not the best place to set up a treatment plan and to ensure that adequate referrals are made, and that that person is followed up with," Tabb Dina says. "So by losing people through the cracks, we are losing real lives."
In the U.S., deaths caused by childbirth complications — including hemorrhage, eclampsia and anesthesia complications, are becoming less common, according to studies cited by the CDC. But a growing number of pregnant people have chronic health conditions — like diabetes and hypertension — that put them at higher risk of complications throughout pregnancy and the following year.
So while extending Medicaid coverage is an important first step, Tabb Dina says efforts to prevent maternal death can't stop there. Health care providers at all levels need to be educated about racial inequities in medicine, she says. More widespread adoption of universal approaches — like screening all pregnant and postpartum people for mental illness and making sure they get connected to treatment — will also help save lives.
And more patients with lived experience need a seat at the table in policy discussion, she says.
"We need to understand the real lived stories of our 'near misses,'" Tabb Dina says. "What were their barriers? What were their complications? What was their experience?"
And then ask: What more needs to change so that no child has to grow up without a mother whose death could have been prevented?