When Dr. Maureen Kelley asks women about the impact of suffering a stillbirth, their answers are strikingly similar – whether they live in Seattle or in a rural Ugandan village. Many women feel like losing the child is their fault, feel pressure to “get over it” and may even be blamed by others for the loss.
Kelley is working to eliminate the stigma behind this unwarranted guilt and silence, and to break down the barriers to recognizing prematurity and stillbirth as major global health issues.
“We’re using social science to raise awareness that we need medical solutions to these problems and to improve support for women until we have better treatment and prevention,” says Kelley, a bioethicist and investigator at Seattle Children’s with the Global Alliance to Prevent Prematurity and Stillbirth (GAPPS) and the Treuman Katz Center for Pediatric Bioethics and at the University of Washington.
Preterm birth is the leading cause of newborn death worldwide and roughly 2.6 million children are stillborn each year. But these problems are not included in the major international measures of disease burden. This makes it harder to attract funding for research on potential solutions.
To overcome this, Kelley and other GAPPS investigators are working to inform international policies to count and recognize stillbirths as deaths.
“If you’re not counting the death, it’s like those children never existed,” she says. “That makes it hard to raise awareness and also has a huge psychological impact on mothers and fathers who need to grieve.”
The causes of stillbirth are still poorly understood but many stillbirths for women in poverty are caused by infections or other health problems that are not the woman’s fault. Yet Kelley’s research has found that, in the U.S. and developing countries, women who suffer a stillbirth are often plagued by guilt. They also can be ostracized if they talk about or grieve for their lost children. And many receive little support from healthcare providers, who aren’t typically trained in the unique psychological issues that parents face with a stillbirth.
“If women can’t do the things we normally do to recover from a death in the family, it makes the loss even more devastating,” Kelley says. “Husbands often suffer in silence as well and may have different needs for grieving and support.”
Kelley and the GAPPS team are investigating whether panels of parents who have suffered stillbirths can effectively teach medical students and residents about how to better support patients. They are also developing ways to include training in stillbirth and related issues as part of medical schools’ curriculum.
“The best way to give these women expert care is to train the next generation of obstetricians on what they need,” Kelley says.
In developing countries, Kelley is learning that seemingly small steps can trigger big progress. In Uganda, she recently guided providers in a neonatal intensive care unit through the ethical issues surrounding key maternal health questions. And one rural African hospital that Kelley advises started including fathers in meetings between doctors and women who have had a stillbirth. The hope is that, by educating men and women side-by-side on underlying medical issues, this will encourage more supportive behavior from the husbands.
“Our goals are to get rid of the stigma surrounding stillbirth and to help parents cope with and recover from these terrible losses,” Kelley says. “It can be challenging to change attitudes, but we’ve done it with other health issues and we can do it here.”