This story was originally published by ProPublica.
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After Dr. Karen Gibbins’ son was stillborn in 2018, doctors could not explain why it happened.
She underwent genetic testing, which came back normal, and an examination of her placenta, which her medical records show was “notable for the lack of evidence” of an infection or any abnormalities.
But Gibbins didn’t give up hope of finding an answer. She had also asked for an autopsy.
For Gibbins, a maternal-fetal medicine specialist at Oregon Health & Science University who has published research on stillbirths, her son’s death in her 27th week of pregnancy hit painfully close to home. Her expertise added urgency to her desire to understand what had gone wrong.
When the final autopsy results came back about six months later, she was stunned to learn that her son, whom she had named Sebastian, had a rare disease caused by her antibodies attacking the cells in his liver.
By then, Gibbins, who had a son at home, had learned she was pregnant again. She forwarded the report to her doctor, who started her on grueling weekly infusions of antibodies. When she suffered an unrelated complication at 32 weeks and began bleeding heavily, her doctor delivered her baby immediately.
Where there was silence after Sebastian’s birth, Everett cried when he was born.
“If we had not had that autopsy,” Gibbins said, “my third child would have died as well.”
Researchers and national obstetric groups, including the American College of Obstetricians and Gynecologists and the Society for Maternal-Fetal Medicine, have called on doctors and hospitals to offer a stillbirth evaluation, a systematic assessment that includes placental exams, genetic testing and autopsies.
But too often they are not done, making the already complex task of determining the causes of death even more difficult. In about one-third of stillbirths, the cause of death is never determined, according to a recent Centers for Disease Control and Prevention report.
Some doctors do not offer patients the postmortem exams after a stillbirth; some patients decide against them without fully understanding the potential benefits. The federal government doesn’t cover the cost of an autopsy after a stillbirth, though many experts say it should be viewed as a continuation of maternal care.
Research has shown that placental exams may help establish a cause of death or exclude a suspected one in about 65% of stillbirths, and autopsies were similarly useful in more than 40% of cases.
While placental exams, autopsies and genetic testing are all recommended, at the very least the placenta should always be tested, said Dr. Drucilla Roberts, a perinatal pathologist at Massachusetts General Hospital and professor of pathology at Harvard Medical School.
“It’s the heart and lungs of the baby” while in the womb, said Roberts, who added, “The placenta should definitely be evaluated in every stillbirth.”
But in 2020, placental exams were performed or planned in only 65% of stillbirths, the most recent CDC data shows. Meaning that in thousands of stillbirths that year, the placenta was thrown out without ever being tested.
Autopsies are performed in even fewer cases. Those exams, according to CDC data for 2020, were conducted or planned in less than 20% of stillbirths.
Experts blame the low rates on several factors. Because an autopsy often is performed in the days following a stillbirth, doctors and nurses have to ask families soon after they receive news of the death if they would like one. Many families can’t process the loss, let alone imagine their baby’s body being cut open.
What’s more, many doctors aren’t trained in the advantages of an autopsy, or in communicating with parents about the exam. Doctors also often don’t tell patients that, for example, families can still have an open casket funeral after an autopsy, because the incisions are done in such a way that they can easily be covered by clothing.
“I think a lot of times there can be misconceptions among providers,” said Dr. Jessica Page, an assistant professor and maternal-fetal medicine specialist at University of Utah School of Medicine and Intermountain Healthcare. And if doctors aren’t providing compassionate and informed counseling on the potential benefits of the exams, patients may lose the opportunity to learn why their child died.
“It impairs our ability to give them thorough counseling regarding risk in future pregnancies,” Page said. “It’s hard to reduce the rate of stillbirth if we don’t understand why they all happen.”
Page is working to help doctors better counsel patients about autopsies following a stillbirth, and she and Gibbins are planning to apply for a federal grant to develop a step-by-step tool to walk patients through the autopsy process.
The need for evaluations is underscored by the current stillbirth crisis. Every year more than 20,000 pregnancies in the U.S. end in stillbirth, the death of an expected child at 20 weeks or more. About half occur at 28 weeks or more, after the point a fetus can typically survive outside the womb.
But the stillbirth rate has received little public attention, which has been made worse by insufficient research and the experience of some mothers who have complained that medical professionals ignored or dismissed their concerns. One study found that nearly one in four U.S. stillbirths may be preventable.
In the summer of 2020, Kendra Skalski arrived for her doctor’s appointment with her hospital bag packed. It was a day before her due date, and she was uncomfortable and ready to deliver. Skalski asked her doctor what the earliest date was that she could have a scheduled delivery, but she said her doctor told her not before 41 weeks.
This was her first pregnancy, and Skalski said she didn’t know she could push back.
But hours before Skalski was scheduled to be induced, she realized she hadn’t felt the baby kick. She called her doctor’s office and was told to head in to the hospital early. Skalski said the person she spoke to didn’t sound worried, so Skalski wasn’t worried either.
“I just remember thinking everything was fine,” Skalski recalled.
At the hospital, the staff collected her insurance information. She laughed with her husband, a New York City firefighter, as she filled out the paperwork.
When the nurse struggled to find the baby’s heartbeat, Skalski thought the monitor was broken. She searched her husband’s face, staring intently at his eyes, hoping for reassurance. “Everything is going to be OK,” he told her.
Then a doctor confirmed that her baby, a girl she had named Winnie, didn’t have a heartbeat.
“This isn’t happening,” Skalski recalled saying. “This isn’t happening.”
Skalski couldn’t comprehend her loss, let alone the decisions she then had to make. Induce the delivery of her dead daughter or go home and come back in the morning? Vaginal delivery or cesarean? Burial or cremation? Placental exam or autopsy?
The doctor, she said, told her an autopsy likely wouldn’t find anything. Skalski also struggled with her own feelings of guilt; she wouldn’t be able to live with herself, she said, if the autopsy revealed that she had somehow caused her daughter’s death. And the thought of someone cutting open her daughter left her distraught. She said no to the autopsy.
She now regrets that decision. The doctor had asked her about the autopsy before she had even delivered her daughter, she said, and no one explained to her that she might want the results after the shock wore off.
“I wish that I had been more well-informed,” she said. “I wish that someone had said, ‘OK, this is nothing that you did. Let’s find out what it was.’”
Skalski said she chose Northwell Health, New York State’s largest health care provider, because of its reputation. A spokesperson for Northwell Health did not answer questions about Skalski’s care but said its hospitals follow ACOG guidelines and consider inducing a mother between 41 and 42 weeks, though doctors weigh a variety of factors, including communication with expecting mothers, “in order to provide the best possible care for each individual patient.”
In addition to possibly helping her understand why her daughter died at 41 weeks, the autopsy could have offered her and her doctors some clarity when she got pregnant again. Skalski became the inaugural patient of the Rainbow Clinic at Mount Sinai Hospital in New York City, the first of its kind in the U.S., which is modeled on similar clinics in the United Kingdom that employ specific protocols to care for people who have had a stillbirth.
In August, Skalski gave birth to her daughter, Marigold.
Although general pathologists can perform autopsies and placental exams, perinatal pathologists undergo specialized training to help them know what to look for in cases of stillbirth. By all estimates, the U.S. is currently suffering from a shortage of perinatal pathologists, said Dr. Halit Pinar, a longtime perinatal pathologist and professor at The Warren Alpert Medical School of Brown University. He worries that recruiting a well-trained perinatal pathologist after he retires will be a challenge.
“Perinatal pathology is not glorious,” he said.
Younger doctors know choosing another pathology specialty may be a more secure professional path, he said, but perinatal pathology is critical, and autopsies after a stillbirth are essential. Some of Pinar’s most rewarding moments have come from being able to provide closure to mothers and explain that they are not to blame.
When his team received a federal grant that covered autopsies through the Eunice Kennedy Shriver National Institute of Child Health and Human Development, which is part of the National Institutes of Health, the stillbirth autopsy rate reached around 95%, he said. Once funding ended, he said, the number of autopsies fell to around 30% to 35%.
Medicaid, he said, should consider paying for autopsies after stillbirths as an extension of postpartum coverage.
“If there is reimbursement, so that it’s not on the shoulders of the hospital budget, it is going to help,” Pinar said. “This is part of maternal care.”
Many larger academic hospitals absorb the cost of autopsies, but some families have said uncertainty around whether the cost of the autopsy was covered affected their decision not to have an autopsy done.
A spokesperson for the Centers for Medicare & Medicaid Services said federal payment for autopsies is not permitted because Medicare and Medicaid laws do not allow for their coverage.
The Stillbirth Health Improvement and Education (SHINE) for Autumn Act, a bill co-sponsored by U.S. Sens. Marco Rubio, R-Fla. and Cory Booker, D-N.J., seeks to improve stillbirth research by providing training in perinatal autopsies, but the legislation has not passed the Senate.
Even if a family wants an autopsy, it doesn’t guarantee that it will happen.
Stephanie Lee’s daughter, Elodie Haru Ansari, was stillborn last year.
Lee was 36 weeks pregnant, though her belly was so big people frequently asked if she was having twins. Still, medical records show Elodie weighed 3 pounds, 10 ounces at birth. Lee, a registered nurse, said her doctor had suspected her daughter might have had a birth defect where her esophagus did not develop properly.
Lee and her husband, Tunaidi Ansari, wrestled with so many unanswered questions that there was no doubt in their minds about the autopsy. Lee signed the paperwork to have one performed.
They waited for weeks to receive the results, but when they never arrived, she asked her doctor about the delay. The doctor called her, and only then, she said, did she and her husband learn that the hospital never performed the autopsy.
“We were promised an autopsy,” Ansari told the doctor. “We were promised every single thing to test for, and the most basic thing was the autopsy, which they said was done on the same day or the next day, and we don’t have it.”
As he spoke, Lee sobbed.
A hospital administrator later wrote Lee a letter that explained that the autopsy consent form was not sent to the correct office, and “as a result, the morgue was not made aware of the request for autopsy.” In light of the “break-down in communication,” the administrator said, the hospital was updating its procedures. “Although it is not possible to change the outcome in your case,” she wrote, “I want to assure you that all measures are being taken to prevent a circumstance like this from ever occurring again.”
Neither Weill Cornell Medicine, where Lee received her care while pregnant, nor NewYork-Presbyterian Alexandra Cohen Hospital for Women and Newborns, where she delivered her stillborn daughter, responded to requests for comment.
On a recent Friday, Lee, who is pregnant with her second child, gathered her family to celebrate what would have been Elodie’s first birthday. She hung a banner and balloons above a table filled with stuffed animals, flowers and photos of Elodie. In the center was a five-layered tteok cake, a Korean rice cake traditionally served when a child turns one.
Later that evening she held the urn with Elodie’s ashes next to her belly and said goodnight to both her daughters. The next morning, she ordered her coffee as usual, under the name “Elodie.”