In 2021, after five rounds of egg retrieval resulted in just one viable embryo, Tianyan Goellner was pregnant. She was 43 years old, and had tried to conceive without medical intervention with little success, including one early miscarriage.
The first few months of her successful IVF pregnancy were uneventful. “But considering my age and that it was my only chance — I was very conservative,” she said.
She knew she was considered high-risk due to her age, and sought out a knowledgeable obstetrician. Together they came up with a plan to do ultrasounds to evaluate the baby’s wellbeing every eight weeks, and a regular checkup every two weeks after 28 weeks gestation. At 36 weeks the doctors would see her weekly, she was told, and maybe do a common 20-minute prenatal test, called a non-stress test, to check the baby’s heartbeat.
The baby passed every checkup, said Goellner. Then, at 30 weeks, “I felt very little movement,” she recalled. “I called in, and eventually they told me come in.”
The baby appeared to be healthy. Goellner said she apologized to her provider — she felt she had inconvenienced the doctor — but she was only trying to follow what she read she was supposed to do, which was to call if she felt a decrease in movement. She said the doctor, following standard guidelines, sent her home.
A few weeks later, at 34 weeks, Goellner was concerned that the baby was moving abnormally again. This time the movements felt different — and frantic. The baby also had hiccups, which concerned Goellner. The doctor’s office told Goellner to come in and gave her a non-stress test. Goellner told Undark that the on-call doctor said the baby was just excited, and there was nothing to be worried about.
The next morning, Goellner felt a little movement. By early afternoon, she felt nothing. “I kept thinking, I won’t bother them,” she said. “But by late afternoon, still nothing.” Goellner returned to the same hospital she was at less than 24 hours before, where a provider confirmed the baby, a girl who she named Liliane, had died.
Goellner’s experience is common among parents who have lost a pregnancy to stillbirth, defined by the Centers for Disease Control and Prevention’s National Center for Health Statistics as the death of a fetus that is at least 20 weeks old that occurs before or during delivery. As many as half detect a decrease in movement and kicks. (In cases like Goellner’s, some experts think such a decrease should be taken more seriously by their health care providers.)
The leading causes of stillbirth are likely problems with the placenta or umbilical cord, preterm labor, infection, birth defects, and high blood pressure disorders like preeclampsia, according to the National Institutes of Health. Despite advancements in prenatal care, such as ultrasound technology and access to genetic screenings, stillbirth rates in the U.S. have only declined slightly over the past 20 years. Hovering at approximately 21,000 in 2020, stillbirths claim more children’s lives than car accidents, drowning, fire, flu, guns, listeria, poison, and sudden infant death syndrome combined, according to data from the CDC. (A Covid-19 diagnosis while pregnant, research published by the agency last November found, increased stillbirth risk.)
A 2018 study published by the Journal of Obstetrics and Gynecology posited that almost a fourth of stillbirths may be preventable.
Eighty percent of stillbirths happen to people who are at low risk, and certain communities are hit hardest. Black women, for instance, are more than twice as likely to experience stillbirth as White women. Around half of stillbirths are Medicaid births.
A 2018 study published by the Journal of Obstetrics and Gynecology posited that almost a fourth of stillbirths may be preventable. But, experts say, due to lack of awareness, misinformation, low-quality data, and insufficient prevention strategies, the numbers remain unchanged. Indeed, data on education on fetal movement and stillbirth prevention is a “massive hole” in obstetrics, said Heather Florescue, an obstetrician/gynecologist in private practice at Women Gynecology and Childbirth Associates in Rochester, New York.
Despite the shocking statistics, the U.S. is the only wealthy country that doesn’t have a national system to report and investigate stillbirths, although newly-introduced legislation may help. In the meantime, without the resources to collect accurate information about stillbirths, in most cases, the causes remain a gray area and educational void.
American parents with money and means can have great birth outcomes, said Robert Silver, professor of obstetrics and gynecology at the University of Utah Health Sciences Center and chief of the Division of Maternal-Fetal Medicine, who also co-authored the 2018 article. Unequal access to healthcare is the primary reason the U.S. is an outlier, he said: “We have a very high ceiling, but a lower floor.”
The inequity in health care, Silver said, is likely the largest contributor to these stillbirth numbers. There’s not enough focus on stillbirth, and not enough advocacy for stillbirth awareness, he added. “And not acknowledging the pain in grief and loss.”
Wealthy countries that have focused on stillbirth education and prevention have better outcomes. In 2019 in Australia, some maternity care providers implemented an evidence-based initiative, and participating obstetric offices have reported a 21 percent reduction in stillbirths. The United Kingdom launched a similar protocol in the last decade, and in just 2 years, the participating maternity units saw a 20 percent drop in stillbirths.
“What these countries have done is make it a goal, with a systematic approach,” said Silver, including education, audits, and extensive evaluations of stillbirths.
Some obstetricians in the U.S. have chosen to go above standard American protocols. Florescue’s team, for example, has been working to educate their patients about stillbirth risks and prevention strategies by following the U.K.’s Savings Babies’ Lives protocol. “We can’t prevent all stillbirths,” she said, but she wants to be able to assure her patients: “you did everything you could.”
Florescue said one key driver of the failure to address stillbirths is the fear of litigation. If doctors frame stillbirths as unpreventable, more than a freak accident, she added, doctors won’t risk getting sued. Jill Wieber Lens, a law professor at the University of Arkansas who specializes in stillbirth and medical malpractice, confirmed the risk of legal action. Obstetricians are sued more than any other doctor, she said. A 2015 Medscape study showed that 85 percent of women’s health professionals have been involved in medical malpractice lawsuits.
“At the same time, we’re only talking about preventable stillbirths,” she said. “And far from everyone injured actually sues.”
But if the American College of Obstetricians and Gynecologists, or ACOG, the main professional organization for doctors who deliver babies, were to institute stillbirth prevention education, then that would become the new standard of care. And as long as the doctor follows the standard of care, there’s no liability, she said. “Crassly, it’s also partly economic on the doctor’s part,” she added, since insurance companies don’t cover going beyond the standard of care.
Undark asked ACOG what the current biggest obstacles to decreasing stillbirth rates in the U.S. are. In an email, Christopher Zahn, chief of Clinical Practice and Health Equity and Quality at ACOG wrote: “This is a complex and multifactorial issue further complicated by the fact that, in many cases, even after comprehensive evaluation a cause is not identified. For instance, for many adverse health outcomes, if causes are identified it can lead to programs, assessments, or interventions in order to potentially prevent the adverse outcome. When the cause is not able to be determined, it is unquestionably more difficult to design assessments or interventions. Additionally, any assessment or intervention needs to be evaluated for potential harms and benefits.”
After losing her son Caleb to stillbirth in 2017, Lens has devoted her work to relevant education, and has pushed to include it in informed consent — a principle in medicine that states the patient’s risks should be communicated to them before treatment. In other words, she said, health care providers should explicitly acknowledge to their pregnant patients that stillbirth is a risk. Instead, she said, stillbirth remains unspoken in the field because it’s scary, and also because to empower and educate means to extend blame to health care providers. As a society, she added, “we love to blame the pregnant woman.”
Yet another piece to the puzzle is in the data. All vital statistics are decentralized, said Lens, and the U.S. lacks a national tracking system, in part because the constitution doesn’t give power to the federal government to control such stats. There is federal guidance, Lens added, but each state handles the statistics differently, including fetal death certificates.
Most states use the medical definition of 20 weeks gestation or later. But others use different measurements. South Dakota, for example, only issues a fetal death certificate if the fetus weighs 500 grams or more. These data are the key to making new public health laws, Lens said. Without the resources to collect accurate information about the stillbirths that occur, the causes remain a gray area and educational void.
In an attempt to address the lack of proper data collection and reporting, in March 2022, U.S. Senators Marco Rubio of Florida and Cory Booker of New Jersey introduced the Stillbirth Health Improvement and Education for Autumn Act, or SHINE. If it passes, the legislation — which previously passed in the House in December — would authorize grants that support improved data collection, establish a program to fund training on procedures like fetal autopsies, and require the development of federal stillbirth education materials.
In the bill’s press release, Booker said: “As countries around the world work to reduce stillbirth rates, the United States continues to lag behind, resulting in thousands of families, especially Black families, experiencing the tragic pain of a baby being stillborn.”
The reason stillbirth is a public health crisis is because it’s related to social determinants of health.
Social factors the U.S. undoubtedly contribute to the lack of stillbirth prevention research, said Terri Major-Kincade, a neonatologist and pediatrician based in Texas. Systemic medical racism has unsurprisingly led to increased numbers of infant loss, she said, and while maternal death has been well-documented in marginalized communities, stillbirth has not.
“Medicine is paternalistic and they diminish women in general,” said Major-Kincade. And that affects Black women disproportionately, as they are more than twice as likely to have a stillbirth.
“The reason stillbirth is a public health crisis is because it’s related to social determinants of health,” she said. The best determinant of poor fetal outcomes, she added, is a patient’s zip code. A 2018 study found that desegregation could prevent approximately 900 stillbirths per year.
Advocates also say that the American stillbirth crisis is partially driven by false information. “Misinformation around stillbirth and stillbirth prevention is rampant,” said Samantha Banerjee, founder of PUSH for Empowered Pregnancy, a nonprofit organization trying to reduce the rate of preventable stillbirths. Banerjee found out her full term baby Alana had died during labor in 2013.
PUSH, which Banerjee playfully calls a “grassroots harassment campaign against ACOG,” has been trying to get the professional organization to make stillbirth prevention a priority. “Stillbirth can happen to any low risk pregnancy and there are things you can do to lower your risk,” said Banerjee. “We don’t want anyone else to carry these regrets that we do.”
(In an email to Undark, Zahn wrote that the “ACOG is aware of PUSH for Empowered Pregnancy advocacy group and has communicated with them several times. Further evidence is needed regarding some of the assessments for which they advocate.”)
“We’re willing to fund it,” said Banerjee of stillbirth education. Through grassroots funding and donations the organization raised $400,000 in individual contributions, mostly from bereaved families mostly in their first full fiscal year alone. “In the meantime, because systemic change takes time,” she added, “we are going directly to the parents.”
For women like Goellner, it is too late. At her six weeks postpartum appointment, she said her obstetrician told her that, for her next pregnancy, she could come into the office as frequently as she wanted to check on the baby.
But Goellner is unsure if she can get another viable embryo. “I don’t have high hope,” she said.
As painful as it is to relive the memories of Liliane’s death, Goellner wants to let the world know her story, to help prevent other stillbirths. “I just want to see some change,” she said. “See some positive change.”
Claire Marie Porter is a Pennsylvania-based health and science journalist whose work has been published in Scientific American, The Washington Post, NextCity, WIRED, and Elle, among other publications. Find her on Twitter @_okclaire.