While deaths among pregnant women are rare, they have increased across Illinois — and the majority of them were possibly preventable, according to a new state report.

Black women continue to be disproportionately affected, and more pregnant people who die are losing their lives months after giving birth as they fall through the cracks of a complicated health system.

“We must give voice to these people who have no voice anymore,” said Shannon Lightner, chief operating officer at the Illinois Department of Public Health, who has pored over thousands of pages of patients’ cases. “We have to illuminate the deficiencies in our system.”

This is the third Illinois Maternal Morbidity and Mortality Report since 2018 from the state public health department. The study provides a deeper look into what happened to 263 people who died while pregnant or within a year of giving birth from 2018 to 2020.

Among key findings:

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* 91% of pregnancy-related deaths might have been preventable.

* More than half of the pregnancy-related deaths happened more than 60 days after they gave birth.

* Most deaths took place in 2020 when the COVID-19 pandemic began.

* Black women were nearly twice as likely to die from any pregnancy-related condition and almost three times as likely to die from pregnancy-related medical conditions, such as having a heart issue, compared to white women.

* Substance use disorder was the leading cause of pregnancy-related death at 32%. Most involved opioids, specifically fentanyl.

“This is a very vulnerable time for people, both while pregnant and postpartum,” Lightner said. “What is impacting this population shifts unfortunately, and often reflects what’s going on in a larger public health space.”

For example, opioid deaths have been skyrocketing in general.

Overall, public health officials said it’s rare for women to die during or after pregnancy, though it is increasing across the U.S. and deaths are up to four times greater here than in other developed countries.

Compared to the last Illinois report on maternal deaths spanning 2016-17, some of the new findings are worse. More women are dying due to a cause related to being pregnant (43% now compared to 34% previously); and more of them are dying more than two months after delivering their babies.

While there were fewer pregnancy-related deaths among Black people compared to the previous report, there were more among Hispanic and white Illinoisans.

“Despite the progress we have made, we still have a long way to go towards ensuring that all Illinoisans can have a safe and healthy pregnancy,” Dr. Sameer Vohra, director of the Illinois Department of Public Health, wrote in the report. “We continue to see disconnected, siloed health services, programs, and systems as a factor contributing to many maternal deaths.”

The new study comes a week after the state hosted a summit on maternal health. Experts on panels shed light on a variety of issues — from the dwindling number of hospitals across Illinois where patients can have a baby, to pregnant people not feeling seen and heard by their providers.

What’s behind the deaths of pregnant people

The report underscores how much social factors such as having a steady job and access to healthy food play into a person’s overall health.

From 2018-20, pregnancy-related deaths were most common among people who were Black, 35 to 39 years old, have a high school education or less, were obese, and have government-funded Medicaid health insurance.

There’s also unequal access to a doctor. Two out of three people who died visited a hospital emergency room at some point during their pregnancy or postpartum, with the highest percentages being low-income white pregnant people in rural counties where there is typically less access to medical care.

The state also found that discrimination based on a person’s weight, race, language or if they had a substance use disorder contributed to some deaths.

In medical charts, some patients were labeled “frequent flier” or “non-compliant,” the report said. Some providers minimized patients’ complaints and there was a “consistent lack of action” by providers to evaluate, treat or refer patients to medical care if they had a substance use disorder.

Black pregnant patients were more likely to experience discrimination that contributed to their deaths, the state found.

“This report demonstrates that Illinois’ inequities in maternal health outcomes by race and ethnicity are persistent and unacceptable,” the report said.

These inequities, the report found, are driven by structural racism. In other words, not having steady access to a doctor and particularly one that speaks your language, and living in a community with a lot of poverty, crime and segregation, according to the report.

The report also provided some stories about patients — with their names changed — to illustrate how some people didn’t get the help they needed, particularly in the weeks and months after they delivered babies.

Anne was a white woman in her 30s with a history of substance use disorder. There were multiple instances in which providers did not direct her to treatment. After she gave birth, state child welfare officials took her baby.

Anne showed up in the hospital ER multiple times for heart problems where she told providers about her substance use. Still, they didn’t refer her to treatment — or an outpatient follow-up visit for her heart issue.

Two months after having her baby, Anne died from heart failure related to her substance use, the report said.

“Lack of proper coordination into substance use disorder treatment programs for pregnant and postpartum women continues to be an issue for Illinois women,” the report found.

Another woman, a Black teenager named Tasha, went to the ER late in her second trimester for chest pain, but providers prioritized a urine drug test. She was negative for drugs and was sent home. About two months later she came back to the hospital with chest pain and shortness of breath. Again, she was tested for drugs “without a specific basis for doing so,” the report found.

Tasha was diagnosed with a heart condition and had an emergency C-section to deliver her baby. She went home with heart medication and was told to follow up, but the hospital didn’t schedule an appointment.

There was another trip to the ER for chest pain and shortness of breath. By the time her baby was one month old, Tasha died from cardiomyopathy, a disease that makes it harder for the heart to pump blood throughout your body.

Tasha was potentially discriminated against with urine drug tests for her race and age, and there were “multiple missed opportunities” to connect the teen with specialists, the report found.

Cara Bergo, an epidemiologist with the state who reviews maternal deaths, said learning the stories of mothers who died can be really hard. On a personal note, she’s 34 and hoping to be pregnant soon herself. But “getting to know the story really helps me with the mission of everything. This is who we’re doing this for. We need to get better.”

Especially when there were so many opportunities to help, Bergo added. “It’s infuriating. You have a lot of emotions. I go from furious to sad to mad.”

The state is still looking into pregnant people who died from COVID-19. There were just four pregnancy-related deaths from the virus in the report, but public health officials cautioned that these only cover about nine months of data over the three years in the report.

Looking ahead to preventing deaths of pregnant people

The report has a variety of recommendations to prevent more deaths. Overall, providers aren’t finding illnesses in time. There aren’t referring pregnant patients to specialists quick enough, and they aren’t getting patients in for follow-up appointments to monitor how they’re doing, the state found.

For patients with mental health or substance use conditions in particular, their care “continues to be insufficient,” the report found.

The state also is calling for providers to create protocols around social factors that affect someone’s health, such as if they have housing and healthy food to eat.

All of this could help women be healthier for the next time they get pregnant, Lightner said.

But the report also lays out how difficult some of these solutions might be. For example, for pregnant people who have a mental health issue or substance use disorder, there can be several barriers to getting help — from not having enough of these providers to begin with, to lengthy wait lists to see one, to having a ride to get to the appointment.

New moms might also prioritize their newborn’s health over their own, Lightner said.

Here’s yet another obstacle, per the report: women might not seek help because they’re afraid of losing custody of their baby, or their other children.

Still, there are small glimmers of hope. Bergo, the epidemiologist, points out that in the state’s first report about maternal deaths there was a big focus on pregnant people who died from a hemorrhage, or severe bleeding. That fueled changes in how to prevent hemorrhage, which is no longer the leading cause of pregnancy-related deaths, Lightner said.

Kristen Schorsch covers public health and Cook County for WBEZ. Follow her @kschorsch.