On May 7, 2015, Susan Valoff ’92 gave birth to her second child, a 5-pound 5-ounce son named James Owen. James’s death certificate lists the same date. Though he never took a breath outside the womb, James had a profound impact on his mother; his father, Scott; and his big brother, Peter. He was a person. He mattered. He was desperately wanted and loved. And Valoff wishes more people would simply utter his name: James Owen Valoff.
“When you have a stillbirth, people are so fearful of saying the wrong thing that they say nothing,” says Valoff, a San Diego–based social worker and vice president of a geriatric care management company. “Some friends never sent a card, never called. You almost feel like you’re going crazy—did this really happen? Was he really here?”
It happens to 2.6 million babies worldwide every year. Many people believe stillbirth is something that happens mostly in developing nations, but it occurs frighteningly often in the United States, where one out of every 160 pregnancies ends with the baby dying in the womb after 20 weeks of gestation. “The rate hasn’t budged for a decade,” says Uma M. Reddy ’88, ’91 MD, a maternal-fetal medicine specialist and leading stillbirth researcher with the National Institutes of Health.
Researchers at Brown are leading the way in trying to figure out why stillbirth happens and what might prevent it. Brown is one of the five institutions involved in the groundbreaking National Institutes of Health Stillbirth Collaborative Research Network, an ongoing study established in 2003, that has shed some light on why stillbirth occurs. Reddy and M. Halit Pinar, a Brown faculty member since 1990 and director of the division of pediatric and perinatal pathology at Women and Infants Hospital, have both played leading roles in this research.
The Darkest Day
Valoff was nearly 39 weeks along when she woke up and realized she had lost her mucus plug. That’s a healthy sign that a woman’s cervix is preparing for birth. Because she wasn’t experiencing contractions, her obstetrician told her not to come in yet, suggesting that she wait for the routine appointment she already had slated for that afternoon. Valoff showed up at her doctor’s office, hospital bag with nightgown and slippers in tow, just in case she delivered that day. She lay back on the exam table, happy and excited that the baby was on his way. Then the doctor, using the fetal Doppler wand, was unable to detect a heartbeat. “And it just hit me,” Valoff recalls. “He’d died.” An ultrasound confirmed the horrific diagnosis, and less than three hours later, at 6:08 p.m., James Owen Valoff was born via cesarean section. Just a week prior, at her 38-week checkup, he had been alive.
A stillbirth is always a shock—a mother-to-be doesn’t discover her baby has died inside her until it’s too late. Valoff says the loss was compounded by the fact that neither her ob-gyn nor her primary care physician so much as mentioned the word stillbirth throughout either of her pregnancies. She learned later that she’d had multiple risk factors: At 45, she was classified as being of “advanced maternal age”—women over age 40 have double the risk of stillbirth compared with women under 35. She’d had a prior cesarean section, and she had conceived via IVF. Other risk factors for stillbirth include never having given birth before; smoking during or just before pregnancy; low socioeconomic status; being overweight or obese; having diabetes or high blood pressure before pregnancy; and pregnancy with multiples. African American women have twice the rate of stillbirth as white and Hispanic women.
Though Valoff enjoyed a textbook pregnancy, in hindsight she says James didn’t move around as much in utero as Peter had. “But every baby is different, so I just thought, ‘He’s not as active.’ Plus, I was working full-time and chasing after a toddler. Like many people, I thought, ‘We’re out of the first trimester. Nothing bad will happen.’”
Valoff and her husband buried James in a small graveside service. One year later, when they felt slightly better equipped to face more people, they held a memorial picnic with about 40 friends and family members. “We stood in a circle and everyone had a little triangular box with a butterfly inside, and at the same moment we all opened them and they flew out.” In their living room sits a small shrine of sorts, with a watercolor painting bearing James’s name and date of birth and death, a butterfly figurine, and a battery-operated candle, which they frequently light in James’s memory.
After James’s death, as her breasts engorged with milk intended for him, Valoff began reading anything she could. Gathering information became her way of coping with gut-wrenching grief. “I can’t emphasize how traumatic it is,” she says. “You’re the mother, you’re carrying this baby inside of you. There’s the horror of wondering, ‘Did I cause this to happen?’”
The more she read, the more upset she became. “I believe that my son would be alive today if my pregnancy had been handled as high risk—which I was, because of my age—but it wasn’t.” (Valoff filed a complaint against her doctor with her state medical board, which ultimately found no reason to discipline the physician.)
In 2017, Valoff started the San Diego chapter of the Star Legacy Foundation, a Minnesota-based nonprofit organization dedicated to reducing pregnancy loss and neonatal death and enhancing care for families enduring such tragedies. Every month, parents gather to talk about their losses as well as to plan fund-raising projects, share knowledge, and plot ways to improve the nation’s stillbirth rate. “It’s difficult to identify the women who are at high risk,” Reddy says. “We know about certain conditions and can monitor those women closely, but many stillbirths remain unexplained.”
Changing the Future of Stillbirth
In the summer of 2017, Valoff attended Star Legacy Foundation’s Stillbirth Summit in Minneapolis, where experts gather with bereaved parents and prevention advocates to better understand the causes of stillbirth and ways to reduce rates. There, she met Reddy, who was overseeing the Stillbirth Collaborative Research Network (SCRN), a large, multicenter research study established in 2003. The study seeks to understand the causes of stillbirth, to develop effective interventions, and to improve reporting. Brown plays a major role as one of the five clinical research sites involved. Fifty-nine U.S. hospitals also participate.
Between 2006 and 2008, the SCRN team collected data for 663 stillbirths and 1,932 live births that occurred at the various sites. Reddy and her team were able to determine a possible or probable cause of stillbirth 76 percent of the time, with placenta and obstetric conditions being the primary culprits. Common placental problems include the placenta failing to grow properly; common obstetric conditions include the cervix opening too early, leading to premature delivery, and labor occurring before 24 weeks. “This is noteworthy because, historically, about 50 percent of all stillbirths have no explanation,” she notes. Other causes included issues with the fetus, such as chromosomal abnormalities or birth defects; maternal infection; umbilical cord problems; and maternal hypertension. The findings were published in 2011 in the Journal of the American Medical Association.
Reddy attributes the study’s success largely to the fact that nearly 80 percent of parents in the stillbirth cohort agreed to undergo a complete medical workup, including perinatal autopsy, placental exam, testing of maternal blood and fetal tissue samples, and more. In general, fewer than half of the parents of stillborn children seek an autopsy, often because it’s too painful to imagine. But study staff members were able to explain to grieving parents the benefits of the procedure, which could help them understand what happened and potentially help their doctors to offer better care in future pregnancies. Reddy says that “512 out of the 663 stillbirth mothers underwent the full workup.”
The Valoffs declined an autopsy, both because their ob-gyn advised against it—“He said, ‘I’m not sure how much it’s going to tell us,’” Valoff recalls—and because they were too disturbed by the notion of their son somehow being further hurt. In retrospect, she wishes they’d opted in, mainly for peace of mind. “Can you imagine if your husband died and the doctor said, ‘Well, we don’t know why’? It haunts you.”
Her placenta was analyzed by two pathologists, however; the results suggest that fetal growth restriction due to a smaller-than-average placenta was at play. Pinar, Brown’s SCRN coprincipal investigator and lead perinatal pathologist, says the information that stands to be gleaned from the placenta cannot be underestimated. “It is a recording of all the intrauterine life, from implantation to delivery,” he says. “Examining it can help us interpret what happened in utero.”
Pushing for More Education
As more women delay motherhood, Valoff hopes to see an uptick in physicians counseling older women on their unique pregnancy risks. She was 45 when pregnant with James, but says her doctor did not recommend any additional scans or testing in the third trimester.
That said, even with so much research taking place, the fact remains that, with stillbirth, things can change in an instant. There’s a chance that even twice-weekly monitoring might not have prevented Valoff’s loss. A woman with zero risk factors can enjoy a picture-perfect pregnancy, only to lose her baby without warning. Both Valoff and Reddy urge pregnant women not to second-guess their intuition. They should monitor the strength, frequency, and pattern of their baby’s movement and immediately proceed to the emergency room if they’re concerned about a decrease in movement.
Though Valoff calls herself a private person, she’s speaking out about her experience—even penning a letter to the editor to the New York Times in 2015—because she doesn’t want societal taboos keeping stillbirth in the dark. “This is a real loss,” she underscores. “You’re not only losing your baby. You’re losing the five-year-old, the 10-year-old, the 45-year-old you were hoping to have in your family. I feel such a sense of mission—to push for research, to fund-raise, to find a way to prevent it—so other people don’t have to go through it. James is my reason for wanting to help other people.”