More pregnant Illinoisans are dying — and it’s mostly preventable

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.”

The third Illinois Maternal Morbidity and Mortality Report since 2018 from the state public health department 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 the key findings:

• 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.

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 new findings are worse. More women are dying due to a cause related to being pregnant (43%, up from 34%); and more are dying more than two months after giving birth.

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

“We continue to see disconnected, siloed health services, programs, and systems as a factor contributing to many maternal deaths,” Dr. Sameer Vohra, director of the Illinois Department of Public Health, wrote in the report.

What’s behind the deaths

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, had a high school education or less, were obese and had government-funded Medicaid health insurance.

Two-thirds of those who died visited a hospital emergency room during their pregnancy or postpartum, with the highest percentages being low-income white pregnant people in rural counties, who typically have less access to medical care.

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

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 names changed — to illustrate how some didn’t get the help they needed, particularly after delivery.

One was Tasha, a Black teenager, who 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. When her baby was about a month old, Tasha died from cardiomyopathy, a disease that makes it harder for the heart to pump blood throughout the 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. 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.”

Looking ahead

The report has a variety of recommendations to prevent more deaths. Overall, providers aren’t finding illnesses in time. They 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.

And care “continues to be insufficient” for patients with mental health or substance use conditions, the report found.

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

All this could help women be healthier for their next pregnancy, Lightner said.

But the report also notes how difficult some solutions might be. For example, pregnant people with a mental health issue or substance use disorder may face several barriers to getting help — a lack of providers, lengthy wait lists and lack of transportation.

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

Another obstacle cited in the report: women might not seek help because they fear losing custody of their baby, or their other children.

Still, there are glimmers of hope. Bergo, the epidemiologist, notes the state’s first report about maternal deaths focused 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.