Erica Hensley
Just two months shy of her due date, Ana Lepe Vick was rushed into an emergency C-section at a suburban Los Angeles hospital in October 2015. The baby she and her husband Josh had already named Owen went into delivery with a heartbeat, but never took a first breath because of undiscovered kinks in his umbilical cord.
Ana had sensed something was wrong when Owen’s kicking had mysteriously slowed but her worried queries were met with nonchalance. Advised by the ER to have a meal and call back if nothing changed, no one realized that the slowing kicks foreshadowed disaster because the hypercoiled tangled cord was cutting off blood flow from the placenta — something it would take the Vicks years to learn.
The next day, Josh had to tell Ana the tragic news over and over because the anesthesia, coupled with the shock of losing a nearly fully developed 31-week pregnancy, made it impossible for her to understand that Owen had died.
“I was just screaming like a wounded animal, but Josh had to relive it over and over again. He had to re-tell me every time I asked to hold the baby,” recalls Lepe Vick.
Included in the stack of records the Vicks still pore over looking for answers is a shocking form called a “fetal death certificate” that the hospital filled out immediately upon delivery. To this day, there’s no cause of death listed and other inaccuracies — despite the Vicks nearly decade-long attempt to correct Owen’s records. Her pregnancy had ended with neither answers, nor any official recognition of birth.
Most states issue a fetal death report. An official government record, it’s similar to, but with key differences from, a birth or death certificate. These vary from state to state, but usually record delivery date, parental information and sometimes cause of death if known. And importantly, they form the sole formal record and data on stillbirth.
Unlike traditional death certificates that are issued days or weeks after a death, fetal death certificates are usually filled out and authorized immediately upon delivery — and as such, often without context or accuracy. “They’re infamously incomplete and inaccurate,” says Jill Wieber Lens, a professor at the University of Iowa College of Law focused on reproductive health law.
Despite raging political turmoil around abortion and what constitutes a life, stillbirths — more than 20,000 yearly deaths, most near full-term — have largely been ignored until recently. They exist in a medical and legal limbo — not officially considered a person because they were not born alive, but not considered as an official death either. Frustratingly for some advocates, neither the anti-abortion nor the reproductive rights movements have championed stillbirth prevention.
Lens is the first to admit that the definitions and data are complicated. The majority of stillbirths happen close to full term, like her son Caleb who was born still three weeks shy of his due date, after 37 weeks — well after a pregnancy is viable. For the parents, these are babies, often with names and great expectations. Because Lens’ career focuses on the reproductive justice and rights spectrum, much of her work centers on abortion. Most abortions in the U.S. happen before 12 weeks in pregnancy — well before viability.
The viability line matters for law, but also for posterity and prevention. Lens has devoted much of her career to understanding the legal tangles of pregnancy loss. “Far too many people, and definitely policymakers, think pregnancy either ends in abortion or a live birth — that’s just not true,” Lens said. “This either-or narrative just erases pregnancy loss, and us.”
In the chaos of the moment, parents are often traumatized, medical staff are often uninformed as to the protocol for stillbirth and doctors often don’t know the cause of death.
“While you’re pregnant, everyone refers to your baby by name and dreams about the future with you,” Lepe Vick says. “But when your baby dies, they decide it was just a ‘pregnancy loss’ and no longer acknowledge the baby you lost. People don’t know what to do with this type of loss — they don’t know how to acknowledge it. But he was a viable baby who, for no reason given, just suddenly died.”
Like many parents after a stillbirth, the Vicks say they were talked out of an autopsy with the graphic and discouraging ways it was described to them. It took them six years to finally find out the cause of Owen’s death through a placental pathologist that determined their son’s hypercoiled umbilical cord — a condition known as torsion — was causing compression of the vessels. It had stopped blood flow to his placenta for days prior to delivery.
Nearly a third of stillbirths never get an official cause of death. And even fewer undergo an autopsy. Most recent data show about a quarter of fetal deaths get the post-mortem exam in the U.S., compared to nearly 100% in other high-income countries. This despite the National Institutes of Health calling for autopsy as standard of care for stillbirths. Even if an autopsy is performed, the results aren’t back by the time the fetal death record is finalized. While a standard death certificate gives the option to amend after autopsy, that is not routine for fetal death certificates.
If an autopsy is performed and finds a different cause of death than stated on the fetal death certificate, they are almost never updated because official processes make it nearly impossible. The Vicks are a prime example. They tried to amend Owen’s death certificate but because Ana’s doctor stopped cooperating, the state of California told her the only option remaining is a court order. “Why should a grieving parent be the one trying to fix this just to get accurate data recorded?” Lepe Vick says.
Research reiterates that states and providers don’t prioritize the amendment process. According to NIH, “Stillbirth records are often not amended or updated after additional autopsy or other information becomes available, limiting records’ usability to researchers and public health officials.”
After Owen’s death, Lepe Vick became a co-founder and full-time volunteer for a nonprofit, PUSH for Empowered Pregnancy, which along with other groups vigorously advocated for legislation to address the alarming incidence of stillbirths in the U.S. A bill called the Maternal and Child Health Stillbirth Prevention Act, signed by President Biden last week, will free up millions of federal dollars toward awareness and prevention of America’s 21,000 annual stillbirths.
Among the key objectives of the Stillbirth Prevention Act: boosting the use of late-stage pregnancy fetal monitoring programs that track fetal kicking and can flag medical providers with real-time vital stats, such as the Count the Kicks app developed by Healthy Birth Day Inc. that brought forth the new legislation.
Separately, a companion bill making its way through congress called the Stillbirth Health Improvement and Education Act (SHINE) would allocate $45 million over a five year period providing state grants to support stillbirth data collection and reporting, including contributing risk factors. It would also provide training grants to pathologists to encourage more fetal autopsies while increasing their sophistication so causes of deaths can be determined.
“If we don’t gather data, we don’t know that this is a problem. If you don’t know it’s a problem you can’t raise awareness and even think about large-scale prevention,” Lens says. Incomplete data not only hampers parents’ closure, but also skews research. In fact, eight states don’t have enough good data to even be included in official federal counts at all — totaling more than 5,000 annual stillbirths. If more than 50% of state’s stillbirths lack a cause of death, the Centers for Disease Control and Prevention doesn’t include that data due to unreliability. Consider that California with the nation’s most stillbirths, and Alabama, Mississippi, and Georgia, which have the highest rates, are all excluded.
What PUSH and Healthy Birth Day are showing is that many stillbirths are preventable through simple kick tracking that, if the monitoring picks up a decrease in kicking, can spawn extra scans to check movement, growth, and the umbilical cord. In fact research shows at least 40% of such deaths globally may be avoidable.
And that’s precisely where the Stillbirth Prevention Act comes in. The bipartisan legislation doesn’t throw new money at the issue but strategically amends the use of so-called Title V maternal and child health funds in the annual $1.6 billion social services block grant toward stillbirth education and prevention. States, as it turns out, could have been using those funds for those purposes all along — and some states have been.
But something as simple as the fact that “stillbirths” were not specifically mentioned in the grant language has kept most states from using the money toward their prevention. States that have applied the funds — mostly in the form of fetal movement tracking, like Count the Kicks — have seen improvements. Advocates say the SHINE bill will further bolster attention to stillbirths with its focus on data collection and autopsy advocacy. The bill got hung up in congress last year over debates over costs but backers, including Senator Cory Booker and bi-partisan congressional caucuses, feel it will eventually become law.
It’s hard to say exactly why so few autopsies are undertaken. But anecdotal evidence based on interviews with dozens of parents and new data from NIH suggest hospitals push parents to opt out of them. Research reiterates that providers fear stillbirth liability. In a national survey, more than a third of obstetricians reported blaming themselves or feeling guilty for stillbirths where no cause of death was identified. And nearly half admitted worrying about subsequent disciplinary or legal action, despite most states limiting liability for babies who never took their first breath.
Autopsy cost, which varies but usually starts at $1,000 — is another barrier. Medicaid, which covers half of U.S. births and disproportionately so for stillbirths, won’t pay for these autopsies.
Dr. Katherine Gold, a family medicine physician in Michigan who researches pregnancy loss, says while stillbirth is its own unique crisis, it is a subset of what she considers lackluster maternal health care generally in the U.S. “Women die in childbirth for the same reasons that infants die and babies die before they’re born,” she says, adding maternal and child wellness is just not high enough on the country’s priority list and too many barriers, like insurance access, block patients from care.
Contrary to other developed countries, ultrasounds and other scans in the third trimester aren’t considered routine for “low-risk” pregnancy, and rarely covered by insurance. This despite many women who experience stillbirth having no known risks throughout pregnancy. For Lepe Vick, a nonstress test may have caught Owen’s distress. But because stillbirth awareness is low among providers and patients alike, nobody ever told her what to be on the lookout for.
Incomplete and inaccurate
States don’t even agree on how to measure stillbirth, much less count them. Across the U.S. states define stillbirth 11 different ways. The most common, which is also the medical standard recommended by the Centers for Disease Control and Prevention and American College of Obstetrics and Gynecology, used by 24 states defines a stillbirth as a fetal death after 20 weeks gestation. Anything prior is considered a miscarriage.
Some states measure fetal weight as the metric — most often using 350 grams, a little less than a pound. Some states say doctors can use either. Some use weeks only if weight is unavailable or vice versa. Two states — Arkansas and Oklahoma — define any fetal death after 12 weeks as a stillbirth. Up until the last decade Tennessee and New Mexico used a 500-gram cut off, likely shaving hundreds of stillbirths from data collection.
“One of the challenges to conducting epidemiologic studies of stillbirth has been the limited availability of reliable population-based surveillance data,” researchers wrote in 2009. And not much has changed. “… Reporting requirements and, to a lesser extent, the criteria used to define fetal death vary. As a result, the use of fetal death reports as a source of surveillance data has been problematic.”
Different inclusion standards lead to sloppy data, experts say. What counts in one state wouldn’t in another, which means the CDC gets incomplete data to inform its epidemiology research. “We just want it to matter more. Close enough isn’t good enough for individual prevention, much less across the country,” Lens says. “Close enough is quite insulting — tell that to a person who’s had to give birth to a dead baby.”
This matters because stillbirths account for more than the top five causes of childhood death combined “We didn’t even know this could happen this late in a pregnancy when everything as far as we knew was fine,” she says, of losing Caleb in 2017, just three weeks shy of her due date. Her view is that providers err on the side of not worrying moms about this risk, she says. But she points out that that reticence is not only paternalistic, it feeds the lack-of-prevention cycle. “People have no idea it happens,” says Lens, “But you can’t know something is a problem unless you count it and count it well enough to have the data to research its causes.”
“Starting upstream is really important here,” said Rose Horton, Atlanta-based nurse and founder of NotOnMyWatch maternal health organization. For Horton, something as simple and non-invasive as fetal movement education not only empowers women in shared decision making, it provides clinicians with real-time data that they can’t ignore. She also works on the board for Healthy Birth Day and has seen both the devastation stillbirth causes, and the power of kick counting prevention.
But she says the changes have to be system-level. As a director of women and infant health at an Emory hospital, she knows that any maternal health standard of care changes have to be data-driven and systematic to work. She’s advocated at the White House and across the country for standardizing the clinician process to make patient education mandatory, especially in the third trimester when most stillbirths happen.
Because stillbirths see stark racial disparities, Horton says individual and community-level empowerment is even more important. Black women are more than twice as likely to experience stillbirth — 1 per 96 births — compared to 1 per 211 births for white women. And states with fewer resources and patchwork health access see higher rates. In 2021, 10 babies were stillborn for every 1,000 births in Mississippi — more than many developing countries.
“Having these conversations with individual moms is a watershed moment with a ripple effect — women start having these conversations with friends, family members and colleagues,” she said. “As we inform, we empower, and the whole population will be impacted.”
For Lepe Vick and her family the scars remain. “I didn’t know a baby could die at this point. At the hospital, everyone was trying to reassure me,” she recalls. “I heard the heartbeat and told Josh I’d be home soon.” She hopes her non-stop work to bring attention to stillbirth prevention means other families won’t have to go through what hers did — and that because change is in the air, her child did not die in vain.
Editor’s note: An earlier version identified Dr. Katherine Gold as an OBGYN. This has been corrected to family medicine physician.
