Why the country’s perinatal mortality rate is stuck in place — except in California

The country’s progress in lowering perinatal mortality has stalled over the last few years, a data brief from the Centers for Disease Control and Prevention recently announced.

The challenge for health journalists covering the country’s unchanged perinatal mortality rate is to move beyond the hospital setting, said Eugene Declercq, a professor of community health sciences at Boston University, who examines policies related to childbirth.

It might be tempting to look at babies who die in the hospital as a result of medical errors (the perinatal rate refers to fetal death after 28 weeks gestation and through the week after birth).  But the real story behind the country’s dismal figures lies in the lack of support many women face prior to and during pregnancy.

“We want mothers starting pregnancy being healthy, and not thinking that being pregnant is the time to start getting healthy,” Declercq said. “That’s a much more nuanced issue and it doesn’t have a clear good guy-bad guy element.”

Those stories are more challenging to report, but they offer critical clues as to why California is the only state that significantly decreased its perinatal mortality rate. 

Using data to spur change

An August report from the Centers for Disease Control found the country’s overall perinatal mortality rate was “essentially unchanged” from 2014 through 2016. Declercq attributes that flattening to a system that has far too many holes in it, which results in women entering pregnancy less healthy than they could be.

An intense effort in California has focused on mothers and babies and has been key to the state’s success in reducing those rates, he said.

“California has said to women: Your health matters,” he said, pointing to the  California Maternal Quality Care Collaborative, which has received widespread attention for its work addressing women dying in childbirth from ProPublica and NPR.

That organization works closely with the California Perinatal Quality Care Collaborative (CPQCC), a network of 140 public and private hospitals focusing on improving care for the state’s mothers and infants. Over the past two decades, the group has compiled a robust database — it gathers information from 90 percent of the state’s neonatal intensive care units (NICUs) — that health providers can use to improve care.

That information is yielding results. The Huffington Post recently wrote about how UCSF Benioff Children’s Hospital in San Francisco used the database to lower the rate of brain bleeds among very preterm babies. 

Hospitals in the collaborative can see how their NICU is performing compared to others in the state. If a shortfall is identified in a certain area, they can compare notes with other providers also working on that measure and access toolkits on the topic. A new one, for example, focuses on improving nutrition for very low birth weight babies.

In another project, 28 NICUs across the state looked at antibiotic usage, gathering data from more than 7,000 patients that enabled them to reduce usage and the complications that can follow. Over 18 months, the 28 hospitals in the project reduced the number of days that patients received antibiotics by 11,700.

Along with the collaboratives, California also has the benefit of minimum nurse-to-patient ratios for hospitals, which can impact perinatal care, said Debra Bingham, the founder and executive director of the Baltimore-based Institute for Perinatal Quality Improvement. Plus, she’s noticed a culture of medical providers who are engaged and energized in quality improvements, she said.

“Another big reason is that success breeds success,” Bingham said. “The more expertise you have, you’re that much better in the next project.”

Racial disparities persist

In the United Sates, the perinatal mortality rate for black women is about twice as high as the rates for both white and Hispanic women, according to the new CDC report. That coincides with other research that has found “staggering” racial disparities in perinatal outcomes.

These disparities persist in California as well, said CPQCC spokeswoman Anjali Chowfla. The collaborative is working to understand how families experience care differently and how NICUs can address that. For example, a 2017 study published in the Journal of Perinatology describes how a black mom was “judged very harshly for being late for a feeding even though she had a long and challenging transit ride to get to the hospital. A white mother who was late on the same day was greeted with sympathy.”

Even if the infants themselves might not experience disparate care, their families might not be participating the same way if they feel sidelined or mistreated, Chowfla said, adding “this has the potential to impact health outcomes.” (Last year, I interviewed the perinatal collaborative’s Chief Scientific Officer Dr. Jochen Profit, who has studied how infants’ race influenced the quality of their hospital care in California.)

Chowfla encourages reporters covering these disparities to dig deeper into the other factors that could impact NICU care, such as families who aren’t able to be fully present and engaged in their infant’s care.

For example, perhaps a parent can’t be at the baby’s bedside since he or she lives hours away, and transportation is too costly. Or a parent can’t take time off work without losing a job. As a result, the family might not be as involved, which could lead providers to treat them differently and provide potentially worse care.

“These are the stories we’re grappling with and trying to research in more detail,” she said. “I’d love for the media to tell them.”

Optimism ahead?

While California is at the forefront of efforts to address fetal and infant death, states throughout the country have or are in the process of launching similar collaborations. The spread of efforts to reduce unnecessary C-sections will likely impact these figures in the future, although those initiatives aren’t happening everywhere, said Bingham of the Institute for Perinatal Quality Improvement. 

Professor Declercq views the efforts across the country as cause for “guarded optimism.”

Guarded because the health providers alone can’t offset broader social problems, such as uneven access to health care well before pregnancy, or poor access to hospitals and doctors in rural areas.

“If you’re not going to concern yourself with women’s health and status in general, then the period of pregnancy isn’t going to do that, even if it’s a really good system,” Declercq said.

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