A national research network seeks to understand the causes of the most personal of losses for women
By Martha Nolan McKenzie
|Few events are as emotionally devastating—or as little understood—as stillbirths. Claiming one out of every 200 pregnancies, stillbirths total 25,000 a year. The number of stillbirths, defined as fetal deaths at 20 weeks of gestation or greater, nearly equals the number of infant deaths in the United States, yet for at least half of the cases, the cause remains a mystery.
To try to find some answers, the National Institute of Child Health and Human Development established the Stillbirth Collaborative Research Network in 2003. The study—the largest single stillbirth study to date—includes Emory and four other clinical sites and ultimately will enroll 500 women whose babies were stillborn and 1,850 women whose babies were born alive. Once all the data is collected, researchers will test about 100 hypotheses across five areas: the roles of maternal medical conditions, infections, genetics, pregnancy complications, and social factors.
“For example, we know African American women have twice the risk for stillbirths as others, but we don’t know why,” says Carol Hogue, director of the Women’s and Children’s Center at the RSPH and co-principal investigator of the study. “We hope this study will shed some light on that. We suspect unrecognized maternal diabetes is a risk factor. We also think we will find subtle genetic causes that have not been previously described, and we expect to identify some socio-demographic characteristics that increase risk. The data we gather here will generate years of research.”
Barbara Stoll, chair of pediatrics in Emory’s School of Medicine and co-principal investigator with Hogue, concurs. “We have made remarkable progress in reducing neonatal mortality and low birth weight mortality, but we have not made the same strides with stillbirth. That’s partly because we don’t yet understand many of the causes of stillbirth.”
The task is nothing short of Herculean. To identify as many stillbirths as possible among Emory’s geographic study population of DeKalb County residents, researchers do active surveillance of seven metro Atlanta hospitals. That translates into calling each hospital twice a day and visiting at least three times a week.
Once stillbirths as well as live births for controls are identified, researchers contact the mother’s doctor to get permission to approach her about the study. If the doctor agrees, a researcher meets with the parents and explains the study, detailing everything that is involved—a placental exam by a pediatric pathologist, a maternal interview, a DNA study that involves a blood draw and storage of DNA for future studies, a copy of their medical records, and an autopsy of the fetus for stillbirths.
“The response to this study has been amazing,” says Hogue. “Our goal was to approach at least 70% of the women who had stillbirths, and we are exceeding that. We were shooting for less than 50% to agree to autopsy, and we are getting closer to 60%. Women are eager to participate because they want answers.”
|Barbara Stoll and Carol Hogue are leading the Stillbirth Collaborative Research Network to help prevent devastating losses for couples like Silvia Medrano-Edelstein and her husband Ken, who recently visited the Garden of Angels.|
|A welcome study ally
The study team found an unexpected ally when it made arrangements for transportation of the fetuses. Upon learning about the study, A.S. Turner & Sons Funeral Home agreed to transport all fetuses from metro hospitals to Egleston at no charge. If the parents cannot afford cremation, Turner & Sons will perform the service after the autopsy, again at no charge, and carry the ashes to the Garden of Angels, a scattering garden in Stone Mountain, Georgia.
“The Stillbirth Collaborative Research Network is a wonderful program, and everyone here at the funeral home supports it,” says Al Richardson, director of aftercare and pre-need programs at Turner & Sons. “They are going to get a lot of good information and research from it, and we are more than glad to do what little bit we can to help.”
Almost everyone involved with the study seems to share that sentiment. The seven hospitals in the study each agreed unhesitatingly to participate. Hospital physicians, nurses, and bereavement coordinators have been enthusiastic in their support. But perhaps the most receptive participants are the grieving mothers. “We are approaching these women at one of the most difficult times of their lives,” says Janice Daniels, the study coordinator. “They have just suffered a devastating loss, but when we explain the study to them, the majority agree to participate. I think for many of them, the idea that they may be able to help future women brings some sense and meaning to a totally senseless and meaningless event.”
That’s exactly how Silvia Medrano-Edelstein felt. The now 41-year-old chef instructor became pregnant last year with twins on her second artificial insemination attempt. Her pregnancy was plagued with unrelenting nausea, but her sisters and mothers went through similar experiences, so Edelstein wasn’t concerned. At six months, however, she had to be hospitalized overnight for dehydration. She awoke in the middle of the night with contractions and bleeding.
“They took me to the OR and all of a sudden the doctor is telling me to push,” says Edelstein. “I didn’t realize until then what was going to happen. It was too early, and I knew that wasn’t good.”
Her daughter Amelia died before delivery. Doctors tried to keep her from delivering her son, but Elan was born shortly after and lived for a short time.
Though Edelstein and her husband Ken were shocked and devastated by the turn of events, they agreed immediately to participate in the study when a nurse approached them. “We wanted to help prevent other stillbirths,” says Edelstein. “The woman who interviewed us was so amazing and kind. Telling her our story actually helped me heal. I’m grateful that we got to participate, and I hope it will help them find some answers so other parents don’t have to go through what we did.”
Martha Nolan McKenzie is an Atlanta freelance writer.
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