Mississippi leads the nation on infant deaths. Experts say gaps in state data collection may make it worse

By Anna Hu and Sophia Paffenroth | Originally published by Mississippi Today

Mississippi has rejoined a nationwide survey that has long been considered the gold standard for understanding women’s experiences before, during and after pregnancy.

A disruption of federal services caused the state to pause its own effort to collect information for most of 2025. Experts say the data lost during the state’s downtime may lead to worse maternal and infant health outcomes – already deemed a public health crisis.

“We are playing with life and death here. When we do not have information to appropriately capture the extent of a problem, then we cannot solve it,” said Paige Bellenbaum, a trainer with Postpartum Support International, a nonprofit dedicated to helping families struggling with mental health after childbirth.

In January 2025, the Trump administration closed down the survey’s data entry system that facilitated collaboration between the Centers for Disease Control and Prevention and local city and state health departments. Then, in April 2025, the federal team responsible for the survey was placed on leave. At that point, states were left to fend for themselves.

Some states fared better than Mississippi, where the responsible office stopped collecting data on Jan. 31, 2025, and did not resume until Oct. 1, according to the Mississippi State Department of Health. Meanwhile, the department’s leader declared a state of emergency in August over rising infant mortality rates – already the highest in the nation. 

Out of seven states that responded to Mississippi Today, none had pauses as long as Mississippi. Five of those states with consistently poor reproductive and infant health outcomes – Arkansas, Kentucky, Georgia, Ohio and North Carolina – did not pause data collection at all, according to public health officials in those states. Two states, Ohio and North Carolina, do not participate in the Pregnancy Risk Assessment Monitoring System, or PRAMS, but have developed their own pregnancy health surveys in 2016 and 2021, respectively.

Although Mississippi’s office was able to go back and collect data from some mothers who gave birth during the pause, mothers who gave birth in February and March 2025 were no longer eligible to be surveyed by October. State officials also could not tell Mississippi Today how much missing data their team retroactively collected. 

It’s too early to see the effects of this loss. Reports are typically released a year or two after data is collected, allowing researchers to identify issues in the data, analyze key findings and share results.

“We’re going to be missing a nice block of data that could drive interventions,” said Nakeitra Burse, founder of Six Dimensions, a Mississippi nonprofit working to improve Black maternal health outcomes.

Burse’s organization collects data at the community level, but Burse says she only has the capacity to look at a “few small things” at a time. Right now, her group is studying birth workers in the state. Burse believes in the importance of the data her group and others collect, but she doesn’t expect it to replace the state-federal initiative. 

Since 1987, PRAMS has been credited with helping to cut the national rate of infant death nearly in half. It has tracked 81% of births in the U.S. and is critical for policymaking around maternal and infant health, experts say. 

“This is one of the – if not the – largest cornerstones of maternal and infant health data in the U.S.,” Bellenbaum said.

Federal changes lost in translation 

In each participating state, the health department’s PRAMS office surveys a random group of new mothers every month. Then, the department sends data to the CDC. There, researchers ensure data are comparable across states. While on administrative leave for over a year, the CDC staff aren’t allowed to enter the office to perform this work or support local health departments. 

Officials from the Mississippi State Department of Health gave Mississippi Today conflicting statements about the status of data collection over the past year, before settling on a timeline supported by previous statements. 

• On April 8, State Health Officer Dr. Dan Edney said that PRAMS data collection was still paused.
• On April 10, department spokesperson Greg Flynn said PRAMS data collection was currently underway.
• On April 13, Flynn said data collection was only paused between April and June of 2025.
• On April 17, Mississippi Today received records showing that on Sept. 5, 2025, agency officials told a reporter from The Guardian that data collection had been paused since Jan. 31, 2025. 
• On April 22, after Mississippi Today showed Flynn the records, he amended his response and said data collection was paused at the department from Jan. 31, 2025, to Oct. 1, 2025 – six months longer than he had originally said.

Neither the state PRAMS coordinator nor Edney was available for an interview in April, Flynn said. 

Is Mississippi unique?

While Mississippi’s limited resources contributed to a longer pause in data collection, other states have also encountered issues. With only two staff members in the state PRAMS office, sending out surveys and conducting telephone follow-ups is handled by a third party, Mississippi State University. Renewing the contract last summer was a monthslong process hampered by not having an operational PRAMS office at the CDC, Flynn said. 

Across the U.S., communication with the CDC in 2025 was virtually nonexistent, said Arden Handler, professor emerita at the University of Illinois School of Public Health, judging from the responses to her team’s August survey assessing state responses to the PRAMS uncertainty. PRAMS site coordinators expressed concern about losing the ability to compare results across states without federal staff to standardize the data. 

“Every so often, they’ll get an email saying, ‘Don’t worry, your notice of award is coming.’ Or, ‘Don’t worry, we’re going to get your data cleaned and weighted,’ but that’s about it,” Handler said. “And then, nothing really happens.” 

Officials in two other states told Mississippi Today they paused surveillance surveys in 2025. Alabama suspended collection in April and May, while West Virginia did so for five months, from the software shutdown in January until the end of June. 

The CDC gave Mississippi Today scant information. Staff first said the CDC “has not paused PRAMS data collection,” but would not answer questions about if or when the program was paused in 2025. They also would not say how they are processing data when all of their PRAMS staff is on administrative leave. 

A U.S. Health and Human Services spokesperson emailed reporters the following statement and would not elaborate: “HHS is committed to optimizing maternal and infant health outcomes and will share PRAMS data at a later time.” 

With the CDC PRAMS office still on leave, the few workers at the federal Division of Reproductive Health are doing what they can, said Handler. “But they’re not the PRAMS team and they have a million responsibilities,” she said. “They don’t have time.

What’s lost when data disappears

The loss of this data has long-term implications for policymakers’ abilities to assess the impact of their initiatives. It will be difficult to know whether new laws and regulations are helping people, making problems worse or having no effect. 

“If you’re trying to address your infant mortality crisis in that kind of a data vacuum, I think it’s pretty obvious that you’re not going to be able to design high-quality interventions or high-quality, evidence-based policies,” said Rita Hamad, professor of social epidemiology at the Harvard T.H. Chan School of Public Health. 

That can be especially true for mental health, which is often stigmatized and is a leading cause of pregnancy-related death. While the self-reported nature of the PRAMS survey sometimes translates to low participation and not having enough data to perform statistical analyses, the anonymity of responses makes women feel safer being candid. 

Data around perinatal mental health is scarce for two reasons, explained Bellenbaum, the New York-based educator with Postpartum Support International. Despite recommendations from the American College of Obstetricians and Gynecologists to universally screen mothers for postpartum depression, only about half of providers do. Even when they do, mothers are often afraid to respond honestly. 

“There still exists such a widespread level of fear of, ‘If I tell anybody how I’m thinking or feeling, or what’s going on, they’re going to take my baby away,’” Bellenbaum said. 

When she taught courses on maternal health, Handler emphasized the process of how data leads to action. “It means making a decision about a new intervention, a new targeted group, whatever you’re doing,” she said. “And that’s why PRAMS provides so much information to the states.”

On April 30, the Mississippi PRAMS office received funding to run another year of the survey, said Flynn. He added the health department is back in contact with the CDC and the collection process is back to normal. 

But with at least two months of lost data for 2024-25, it’s more likely that the state won’t receive enough responses to properly analyze the data, said Cathy Slemp, a former state health officer for West Virginia. 

Gaps in data collection mean the sample is not as representative and harder to compare across years, she continued. She’s concerned about losing access to critical information that could inhibit the ability to track policy impacts, while Mississippi attempts to solve a public health emergency. 

“When you’re making dramatic policy changes, that’s exactly the time you want to have good data,” Slemp said.

This story was produced with support from the Sarah Yelena Haselhorst Fund for Health Journalism.

This article was originally published by Mississippi Today and is republished here under a Creative Commons license.

Source: Original Article