Stillbirth mother Eleni Michailidis, is a founding member of the New York Chapter of Star Legacy Foundation. We are extremely grateful to Eleni and her husband for sharing their very personal story.
By Catherine Saint Louis of the New York Times – March 9, 2017
Some 26,000 women in the United States give birth to a stillborn child each year. It’s a harrowing experience for parents, and many eventually want to know what went wrong, in part to avoid going through a similar experience in the future. But in the days after delivery, when tests to search for a cause must be conducted, doctors are often hesitant to suggest them, and grief stricken parents often reluctant to permit them.
A rigorous study released on Thursday found that two tests are particularly effective in determining the cause of a stillbirth, a death of a fetus at or after 20 weeks of gestation. An examination of the placenta helped find a cause in about two-thirds of stillbirths, and a fetal autopsy helped in roughly 40 percent of cases, researchers reported. Genetic testing was the third most useful test, helping to pinpoint a cause 12 percent of the time.
“These tests have an impact, and now there’s more of a scientific rationale for their use,” said Dr. Emily S. Miller, an assistant professor of obstetrics and gynecology at Northwestern University who was not involved with the study.
She predicted that this critical new data would not only persuade more obstetriciangynecologists that placental testing “is something we really need to recommend,” but also help convince bereaved parents that followup testing is “worthwhile.” In some cases, knowing the cause of a stillbirth can help to guide management of subsequent pregnancies.
The American College of Obstetricians and Gynecologists has long recommended a slew of possible tests after stillbirths, but this study, published in the journal Obstetrics and Gynecology, is the first nationwide attempt to calculate the relative utility of each. Researchers analyzed 512 stillbirths from 2006 to 2008 from 59 hospitals in five states: Utah, Rhode Island, Massachusetts, Georgia and Texas. The cases are part of second analysis of a study by the Stillbirth Collaborative Research Network, a group funded by the National Institutes of Health that aims to improve stillbirth reporting and to pinpoint its causes.
That network of researchers had previously determined that complications during the birth process, including preterm labor and premature rupture of the amniotic sac, accounted for 30 percent of stillbirths. Before labor, placental problems were the most common cause of stillbirth, accounting for roughly a quarter of cases. Genetic conditions or birth defects were responsible for about 14 percent of stillbirths, infection for 13 percent and umbilical cord issues another 10 percent.
Researchers defined whether a test was useful if it helped establish a probable or possible cause, or if it ruled out a possible cause.
A detailed evaluation of the placenta is not always done after stillbirth because a perinatal pathologist is not available or a physician may not send it for analysis, experts said. And prior studies have estimated that fewer than half of stillbirths are evaluated by autopsy.
Some of that reflects parents’ reluctance. “People are angry, upset, and they feel like it won’t make a difference,” said Dr. Robert Silver, the interim chairman of obstetrics and gynecology at the University of Utah Health Sciences Center and the study’s senior author. Some parents have cultural objections to autopsy, or think it’s God’s will that they suffer a loss, or they worry unnecessarily that the body won’t be back for burial in a timely fashion, he said.
Physicians, meanwhile, also often struggle to have that difficult bedside conversation with grieving parents. “It’s uncomfortable,” said Dr. Silver. “Doctors just want to run away,” he said, but “it’s worth working through any reservation they may have.”
Several experts said the very act of trying to find a cause can bring emotional healing to some parents, even if no cause is ultimately determined.
“Patients often come back after a loss wanting to know what their recurrence risk is,” said Dr. Kathryn Gray, a highrisk obstetrician at Brigham and Women’s Hospital in Boston, who participates in reviews of stillbirth cases. “There’s a lot of anxiety.”
Many parents don’t realize, however, that determining the risk of recurrence often relies heavily on tests like placental examination that must be done soon after delivery.
For women who had high blood pressure during their pregnancies, for example, placental examination helped determine a cause in 90 percent of cases; autopsy was able to pinpoint a cause in about half of such cases.
Autopsy was particularly helpful when stillbirth occurred at early gestational ages, the study found, often revealing evidence of sepsis, or bodywide infection, in women who had had their membranes rupture preterm and prelabor, or in women whose membranes were inflamed by a bacterial infection.
In some cases, knowing a probable cause can help guide a patient’s care in future pregnancies. If a baby is small, for example, the mother can be tested for socalled “antiphospholipid” antibodies, which can indicate a problem with the maternal immune system. Then, Dr. Silver said, “Treatment in the next pregnancy may improve outcome.”
Another example: If a baby has abnormal features and an autopsy reveals birth defects and genetic test shows Trisomy 18, a common chromosomal problem, he said, “Genetic testing next time may be useful.”
Despite the tests, some stillbirths remain unexplained. “It’s frustrating,” Dr. Miller said. But, she added: “Feeling like we are doing everything we can to understand why can bring emotional closure.”
Two years ago, Dr. Eleni Michailidis, 40, delivered a stillborn son, Alexander, at 38 weeks; she recounted her story in an oral history to The New York Times in 2015.
“You’re in such a cloud,” she said about the experience. “You’re not even sure you’re on the planet or not, so when you’re asked, ‘Can we take your baby and do this crazy thing,’ your first thought is, ‘Hasn’t this baby been through enough?’”
But she and her husband, both orthodontists in Whitestone, N.Y., had the placenta analyzed and an autopsy done.
Her placenta showed signs of inflammation, but it was never clear if an infection was the cause, and the couple never got a definitive answer as to why Alexander was born dead.
Still, she has no regrets, she said.
She is not done grieving her firstborn, but in September, she gave birth to his sister, Eliana Alexa Chahine. “The whole thing has been bittersweet,” she said. “I still remember I have a child in heaven, and now, I have another on earth.”
A version of this article appears in print on March 10, 2017, on Page A24 of the New York edition with the headline: Study Backs Use of Tests to Find Cause of Stillbirth.