To tell this story is to tell its end first. On Sept. 1, 2012, Makenna, the only child of Heather Thompson and Geoff Duff of Alexandria, Va., was born dead. She had been alive in her mother’s womb on Aug. 30, but no heartbeat could be found the next day. Her umbilical cord had knotted, then wrapped around her neck, and, at 39 weeks, she was stillborn. Until her baby’s heartbeat could not be found, Thompson says, the pregnancy had been medically uneventful.

Of course, for Thompson, now 41, and Duff, 34, the entire experience of pregnancy had been physically eventful. Thompson had faced — and, she thought, had been spared — the risks of being a late-life mother. Duff said he had waited to have a child until he felt emotionally and financially ready for the responsibilities of parenthood. “When I found out I was going to be a father,” he says, “I was super-happy.”

Thompson focused on having a healthy baby. “I was an avid reader on pregnancy and babies, and I did everything you are supposed to do. I slept on my left side, I avoided lunch meat, I didn’t drink or smoke. But before my daughter’s stillbirth, I had never even heard of such a thing. It was not covered in childbirth education. With all of my reading, I had never heard of it,” she says. “I had no idea I was in danger of my baby dying.”

Stillbirth may seem to be rare, but it actually occurs in about 1 of every 160 pregnancies. Of these stillbirths, 10 to 20 percent occur during labor and delivery.

In the United States, stillbirth is said to occur when a baby dies in the womb after 20 weeks of pregnancy. Miscarriage is a fetal death before 20 weeks and occurs among 15 to 20 percent of women who know they are pregnant.

Ruth Fretts, a Boston obstetrician and Harvard Medical School professor, says most Americans would be surprised to learn that stillbirths are 10 times as common as SIDS deaths. In 2009, Fretts helped write a practice bulletin for the American Congress of Obstetricians and Gynecologists (ACOG) that seeks to educate physicians on what is known about stillbirths and risk factors for them. It offers scant advice on prevention, other than to recommend that women “optimize their health prior to pregnancy.” Still, Fretts says, the message “hasn’t gotten to the main audience of obstetric providers. We need more clinical outreach to providers. Stillbirth is common enough, yet providers feel uncomfortable talking about it.”

Among the many unanswered questions about stillbirths are precise counts of how many pregnancies end in stillbirth, in part because of different tracking mechanisms. Some states issue a birth certificate and a death certificate; some issue only the latter. Advocates are pressing to establish a registry that would track stillborns and include standard information to be gathered by states.

That may help explain why patients such as Thompson are unaware of what can go wrong. “People don’t appreciate the risk of stillbirth in late pregnancy, or the risk factors associated with it — advanced maternal age, obesity, being African American,” Fretts says.

U.S. doctors can offer pregnant women little help in assessing their risk for stillbirth and even less help in preventing it. “It is one of our most under-attended health issues,” says Seattle pediatrician Craig E. Rubens, executive director of the Global Alliance to Prevent Prematurity and Stillbirth. “And yet nationally, we have 25,000 stillbirths each year. Despite modern obstetric technology and screening for infections, we still lose babies in the womb. And our general knowledge of why this happens remains poor. We really need more science and research to understand what leads to stillbirth.”

Because Thompson was older than most expectant mothers, she saw both an obstetrician and a perinatologist. Early in Thompson’s pregnancy, the perinatologist had given her an all-clear, saying, “You are a natural mother. You don’t have gestational diabetes; your feet aren’t swollen.”

Thompson called it a perfect pregnancy. “No complaints, concerns or risks,” she says. “And I felt good, relatively speaking.”

Her doctor and her doula had both recommended a practice known as “kick counting,” which helps women become familiar with their unborn child’s activity and movement, and to notice dramatic changes in it. Thompson followed this advice. Babies who move less may be at greater risk for stillbirth, Thompson says.

ACOG recommends that women talk to their clinicians about kick counting, and that women at high risk begin counting kicks at 28 weeks, 26 weeks if they are carrying multiples. If a baby moves fewer than 10 times in a two-hour window, mothers are advised to “wake the baby up” by drinking more fluids, pushing gently on the baby or taking a quick walk. If none of this increases the baby’s movements, an obstetrician should be called.

“Kick counting is a way to help women be more confident in dealing with their provider,” Rubens says. “The problem is that studies of it are inconsistent, and some OBs say it works, others don’t.”

Thompson, who worked throughout her pregnancy, began her maternity leave in August 2012, just before her due date. She had reached 38 weeks, and her doctors thought that delivery would come soon. On the Wednesday, Aug. 29, Thompson “thought it was strange that I did not feel her moving.”

Makenna barely met the minimum kick-counting standard, moving 10 times in two hours. The midwife who was part of Thompson’s team sent her to the hospital for fetal heart rate monitoring.

That test indicated that the infant’s heart rate was within the normal range, though it was not as fast as it had been. The hospital sent Thompson home.

At one point, Thompson remembers, she noticed an intense period of fetal hyperactivity, much more movement than normal. At 1 the next afternoon, another test at the doctor’s office revealed no heartbeat. At some point during the night, the baby had died. Thompson was admitted that night, and Makenna was born after nearly 24 hours of labor — a vaginal delivery.

“She was 21 inches long and weighed seven pounds and one ounce,” Thompson says. “She was beautiful, with chubby cheeks and curly hair.”

Thompson had nearly everything a new mother has — even milk production — but she did not have a baby.

“What I have is the grief that I carry with me to this day,” she says.

Thompson believes that that last rush of fetal activity was the baby struggling to free her neck from the cord.

Advocates who promote wider understanding and awareness of stillbirth have been calling for increased research to find out why stillbirth occurs, Thompson says.

Although up to one-third of babies are born with wrapped cords, including some that encircle the neck, and although diagnostic tools can determine if the flow of cord blood has been compromised, she says, those tools are not included in care guidelines.

Thompson suggests that parents advocate for more testing, including ultrasound and measurements of cord blood flow to monitor the pregnancy.

Some federal efforts are underway. The National Fetal and Infant Mortality Review, a joint effort of ACOG and the Maternal and Child Health Bureau, part of the U.S. Department of Health and Human Services, is supporting dozens of programs that record data about fetal deaths, including interviewing parents about their experiences. Thompson says that she was one of the last interviews conducted by the program in Virginia: It lost its funding in 2013.

“We do not have much thoughtful analysis,” Fretts says. “We have no stillbirth evaluation, and so it is hard to counsel patients about the possibility of a recurrence, which can lead to a very anxious woman in a next pregnancy.”

In many instances, parents and clinicians do not want an autopsy, usually to spare the family additional trauma, although it might offer insights about what happened. And, Fretts notes, some insurers do not cover autopsies. Grief-stricken parents receive a bill.

In the time since her daughter died, Thompson has channeled her own grief into advocacy for stillbirth awareness and prevention, including working with other bereaved mothers through a support group, Project Knitwell.

“We need clinical data; then doctors would have journal articles and research, not just layperson stories and anecdotes,” she says. “A whole series of things must happen to improve the ultimate outcome: live babies going home.”

Duff feels the same way.

“I will deal with this roller coaster for the rest of my life. And it is important for people to understand what we went through. I still have my peaks and valleys, I still have days that are just as bad as the day it happened. I wake up in tears, and so angry. So I hope people can sympathize — even if they haven’t gone through it, to understand.”

Lynch Schuster is a freelance writer who lives in Maryland.