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By Duaa Eldeib
Federal officials have released a bleak assessment of the country’s progress in understanding and preventing stillbirths, calling the rate “unacceptably high” and issuing a series of recommendations to reduce it through research and prevention.
The National Institutes of Health (NIH) report, titled “Working to Address the Tragedy of Stillbirth,” mirrored findings of an investigation by ProPublica last year into the U.S. stillbirth crisis, in which more than 20,000 pregnancies every year are lost at 20 weeks or more and the expected baby is born dead.
ProPublica’s reporting found that a number of factors contributed to the nation’s failure to bring down the stillbirth rate: medical professionals dismissing the concerns of their pregnant patients, a lack of research and data and too few autopsies being performed.
Additionally, alarming racial disparities in stillbirth rates have compounded the crisis.
“The extent of the problem is massive,” said Dr. Lucky Jain, who served as co-chair of the Stillbirth Working Group of the Eunice Kennedy Shriver National Institute of Child Health and Human Development Council, which issued the report last week.
“All of my life, I have maintained that what I cannot measure, I cannot improve,” Jain said. “And so if I don’t have proper data, records, autopsy findings, genetics, the background information of why a fully formed baby died suddenly, how do I even begin improving things as a scientist?”
The working group concluded that barriers to lowering the stillbirth rate could not be traced to one federal agency or a single state health department or local hospital, Jain said, but to problems “at every level.”
“The report has reinforced what you all have already been saying,” said Jain, who is chair of pediatrics at Emory University School of Medicine and pediatrician-in-chief at Children’s Healthcare of Atlanta.
“ProPublica has emphasized the need for an autopsy, has emphasized the need for reporting stillbirths. There’s plenty of overlap and the same type of concern that ProPublica has expressed around stillbirths.”
ProPublica found that federal health agencies had not prioritized stillbirth-focused research, data collection or analysis and that those agencies, along with state health departments, hospitals and medical providers, had done a poor job of raising awareness about stillbirth risk and prevention.
Although many people, including some medical providers, believe that stillbirths are inevitable, research shows that as many as 1 in 4 may be preventable.
The newly released report, which called stillbirth “a major public health concern,” was the result of a congressional mandate that required the Department of Health and Human Services to develop a stillbirth task force.
The working group was charged with examining health disparities and communities that face a higher risk of stillbirth; barriers to collecting data; the psychological impact of and treatment received after a stillbirth; and known risk factors.
Dr. Diana W. Bianchi, director of the National Institute of Child Health and Human Development, the branch of the NIH that led the working group, said in an email that one of the agency’s goals is to advance efforts to “better understand and ultimately prevent” stillbirths.
Among its priorities, Bianchi said, is moving forward on the working group’s recommendation to create a research agenda to “develop specific, actionable approaches to prevent stillbirth.”
Work to implement the report’s recommendations, she said, will begin this spring and summer.
In total, the working group issued 12 recommendations, the majority of which were aimed at the NIH and the Centers for Disease Control and Prevention (CDC).
A CDC spokesperson said the agency is investigating risk factors and health disparities and is considering which existing CDC projects could be used for stillbirth research, such as those that already collect data on birth defects and pregnancy risks.
“Findings on factors associated with stillbirths will inform CDC’s next steps, including further research and potential prevention efforts,” the spokesperson said.
Several of the working group’s recommendations were related to improving the quality of stillbirth data at the local, state and national levels.
Specific changes included standardizing definitions, enhancing training for employees who collect data for fetal death certificates, and making it easier to amend that data when needed.
One of the reasons stillbirth data often is incomplete or inaccurate is that autopsies, placental exams and genetic testing are not uniformly performed.
And even if one or more of those exams are carried out and do reveal a cause of death, that critical piece of information is typically not updated in state or federal databases.
ProPublica found that in 2020, placental exams were performed or planned in only 65% of stillbirth cases and autopsies were conducted or planned in less than 20% of cases.
The federal report identified several of the same barriers that ProPublica had spotlighted.
“Many parents report that hospital staff discouraged them from requesting an autopsy of their stillborn baby because of cost, because it might be inconclusive, or because it would disfigure the baby,” the working group concluded. “Doctors may also be worried about liability.”
The report noted that while Medicaid covers a large portion of pregnancies and births, it does not cover the cost of an autopsy. Experts previously told ProPublica that they believed an autopsy after a stillbirth should be covered as a continuation of maternal care.
A spokesperson for the Centers for Medicare & Medicaid Services said autopsies are not covered because they do not fall “within the definition of medical assistance established by Congress.”
The working group also suggested that states could model their policies for stillbirth autopsies after policies relating to sudden infant death syndrome.
Many states, which have designated sudden infant death syndrome (SIDS) as a “public health emergency,” pay for autopsies if a baby is suspected to have died of SIDS. In 2020, the number of stillbirths was 15 times the number of SIDS deaths.
The report also addressed the devastating psychological effects of a stillbirth. Many parents withdraw from the world and are at a higher risk of depression, post-traumatic stress disorder and anxiety, the working group found.
Those feelings may be compounded if patients are dismissed or blamed for the stillbirth.
“It is not uncommon for individuals of color, in particular, to speak of healthcare providers who treated them with a dismissive attitude or who feel that there is no point in speaking up about certain concerns because they will not be heard and it will not make a difference,” the report said.
Black women are more than twice as likely — and in some states close to three times as likely — as white women to have a stillbirth, according to 2020 CDC data.
The national stillbirth rate for Black women that year was 10.3 per 1,000 births, and for white women, it was 4.7. But it’s not just Black babies who are dying at a disproportionate rate. So are their mothers.
The same week that the NIH stillbirth report was released, the CDC issued a separate report on maternal mortality that found that the rate of mothers dying while pregnant or shortly after birth increased in 2021, while the rate of maternal mortality in Black women was more than double that of white women.
Sen. Jeff Merkley, (D-Ore.), said the stillbirth report, coupled with ProPublica’s reporting and the most recent CDC data on maternal mortality, “underscores the fact that stillbirths and maternal mortality are shockingly high in the United States compared with other similarly developed nations, and that Black women are paying the highest price.”
Merkley, who last year had co-sponsored a stillbirth bill that did not ultimately pass, called for change and said one way to “stem the tide of these horrific outcomes” is to ensure that states use federal maternal health funding to implement stillbirth interventions, as he proposed doing in his legislation.
The American College of Obstetricians and Gynecologists (ACOG), the nation’s leading organization of OB-GYNs, supports the report’s findings, particularly the need for additional research, said Dr. Christopher Zahn, ACOG’s chief of clinical practice and health equity and quality. Many stillbirths, he said, remain unexplained.
Members of PUSH for Empowered Pregnancy, a New York-based nonprofit that works to prevent stillbirths, emerged as vocal advocates during the working group sessions.
Samantha Banerjee, executive director of PUSH, said the organization forwarded ProPublica’s reporting to the working group and pressed for families who’ve experienced a stillbirth to be included in the process.
After a rocky start in the early sessions, she said, she and her team witnessed a shift in the way the group approached the issue.
Banerjee, whose email signature includes “Mom to Alana, born still in 2013,” said the final report exceeded her expectations.
“This is the first time in over a decade that we have seen the U.S. take a substantial step in the right direction when it comes to ending preventable stillbirths,” she said. “The dire landscape of stillbirth prevention is accurately described, and there are clear calls to action for systemic change intended to prevent stillbirths.”
Originally published by ProPublica.
Duaa Eldeib is a reporter for ProPublica.