The day before doctors had scheduled Amanda Duffy to give birth, the baby jolted her awake with a kick.
A few hours later, on that bright Sunday in November 2014, she leaned back on a park bench to watch her 19-month-old son Rogen enjoy his final day of being an only child. In that moment of calm, she realized that the kick that morning was the last time she had felt the baby move.
She told herself not to worry. She had heard that babies can slow down toward the end of a pregnancy and remembered reading that sugary snacks and cold fluids can stimulate a baby’s movement. When she got back to the family’s home in suburban Minneapolis, she drank a large glass of ice water and grabbed a few Tootsie Rolls off the kitchen counter.
But something about seeing her husband, Chris, lace up his shoes to leave for a run prompted her to blurt out, “I haven’t felt the baby kick.”
Chris called Amanda’s doctor, and they headed to the hospital to be checked. Once there, a nurse maneuvered a fetal monitor around Amanda’s belly. When she had trouble locating a heartbeat, she remarked that the baby must be tucked in tight. The doctor walked into the room, turned the screen away from Amanda and Chris and began searching. She was sorry, Amanda remembers her telling them, but she could not find a heartbeat.
Amanda let out a guttural scream. She said the doctor quickly performed an internal exam, which detected faint heart activity, then rushed Amanda into an emergency cesarean section.
She woke up to the sound of doctors talking to Chris. She listened but couldn’t bring herself to face the news. Her doctor told her she needed to open her eyes.
Amanda, then 31, couldn’t fathom that her daughter had died. She said her doctors had never discussed stillbirth with her. It was not mentioned in any of the pregnancy materials she had read. She didn’t even know that stillbirth was a possibility.
But every year more than 20,000 pregnancies in the United States end in stillbirth, the death of an expected child at 20 weeks or more. That number has exceeded infant mortality every year for the last 10 years. It’s 15 times the number of babies who, according to the Centers for Disease Control and Prevention, died of Sudden Infant Death Syndrome, or SIDS, in 2020.
The deaths are not inevitable. One study found that nearly one in four U.S. stillbirths may be preventable. For pregnancies that last 37 weeks or more, that research shows, the figure jumps to nearly half. Thousands more babies could potentially be delivered safely every year.
But federal agencies have not prioritized critical stillbirth-focused studies that could lead to fewer deaths. Nearly two decades ago, both the CDC and the National Institutes of Health launched key stillbirth tracking and research studies, but the agencies ended those projects within about a decade. The CDC never analyzed some of the data that was collected.
Unlike with SIDS, a leading cause of infant death, federal officials have failed to launch a national campaign to reduce the risk of stillbirth or adequately raise awareness about it. Placental exams and autopsies, which can sometimes explain why stillbirths happened, are underutilized, in part because parents are not counseled on their benefits.
Federal agencies, state health departments, hospitals and doctors have also done a poor job of educating expectant parents about stillbirth or diligently counseling on fetal movement, despite research showing that patients who have had a stillbirth are more likely to have experienced abnormal fetal movements, including decreased activity. Neither the CDC nor the NIH have consistently promoted guidance telling those who are pregnant to be aware of their babies’ movement in the womb as a way to possibly reduce their risk of stillbirth.
The American College of Obstetricians and Gynecologists, the nation’s leading obstetrics organization, has been slow to update its own guidance to doctors on managing a stillbirth. In 2009, ACOG issued a set of guidelines that included a single paragraph regarding fetal movement. Those guidelines weren’t significantly updated for another 11 years.
Perhaps it’s no surprise that federal goals for reducing stillbirths keep moving in the wrong direction. In 2005, the U.S. stillbirth rate was 6.2 per 1,000 live births. The U.S. Department of Health and Human Services, in an effort to eliminate health disparities and establish a target that was “better than the best racial or ethnic group rate,” set a goal of reducing it to 4.1 for 2010. When that wasn’t met, federal officials changed their approach and set what they called more “science-based” and “realistic” goals, raising the 2020 target to 5.6. The U.S. still fell short. The 2030 goal of 5.7 was so attainable that it was met before the decade started. The 2020 rate, the most current according to the CDC, is 5.74.
By comparison, other wealthy countries have implemented national action plans to prevent stillbirth through awareness, research and care. Among other approaches, those countries have focused on increasing education around stillbirth and the importance of a baby’s movements, reducing rates of smoking and identifying fetuses that grow too slowly in the womb.
The efforts have paid off. The Netherlands, for instance, has reduced its rate of stillbirths at 28 weeks or later by more than half, from 5.2 in 2000 to 2.3 in 2019, according to a study published last year in The Lancet.
Dr. Bob Silver, chair of the obstetrics/gynecology department at University of Utah Health and a leading stillbirth expert, coauthored the study that estimated nearly one in four stillbirths are potentially preventable, a figure he referred to as conservative. He called on federal agencies to declare stillbirth reduction a priority the same way they have done for premature birth and maternal mortality.
“I’d like to see us say we really want to reduce the rate of stillbirth and raise awareness and try to do all of the reasonable things that may contribute to reducing stillbirths that other countries have done,” Silver said.
The lack of comprehensive attention and action has contributed to a stillbirth crisis, shrouded in an acceptance that some babies just die. Compounding the tragedy is a stigma and guilt so crushing that the first words some mothers utter when their lifeless babies are placed in their arms are “I’m sorry.”
In the hospital room, Amanda Duffy finally opened her eyes. She named her daughter Reese Christine, the name she had picked out for her before they found out she had died. She was 8 pounds, 3 ounces and 20 1/2 inches long and was born with her umbilical cord wrapped tightly around her neck twice. The baby was still warm when the nurse placed her in Amanda’s arms. Amanda was struck by how lovely her daughter was. Rosy skin. Chris’ red hair. Rogen’s chubby cheeks.
As Amanda held Reese, Chris hunched over the toilet, vomiting. Later that night, as he lay next to Amanda on the hospital bed, he held his daughter. He hadn’t initially wanted to see her. He worried she would be disfigured or, worse, that she would be beautiful and he would fall apart when he couldn’t take her home.
The nurses taught Amanda and Chris how to grieve and love simultaneously. One nurse told Amanda how cute Reese was and asked if she could hold her. Another placed ice packs in Reese’s swaddle to preserve her body so Amanda could keep holding her. Amanda asked the nurses to tuck cotton balls soaked in an orange scent into Reese’s blanket so the smell would trigger the memory of her daughter. And just as if Reese had been born alive, the nurses took pictures and made prints of her hands and feet.
“I felt such a deep, abiding love for her,” Amanda said. “And I was so proud to be her mom.”
On the way home from the hospital, Amanda broke down at the sight of Reese’s empty car seat. The next few weeks passed in a sleep-filled fog punctuated by intense periods of crying. The smell of oranges wrecked her. Her breast milk coming in was agonizing, physically and emotionally. She wore sports bras stuffed with ice packs to ease the pain and dry up her milk supply. While Rogen was at day care, she sobbed in his bed.
In the months that followed, Amanda and Chris searched for answers and wondered whether their medical team had missed warning signs. Late at night, Amanda turned to Google to find information about stillbirths. She mailed her medical records to a doctor who studies stillbirths, who she said told her that Reese’s death could have been prevented. They briefly discussed legal action against her doctors, but she said a lawyer told her it would be difficult to sue.
Amanda and Chris pinpointed her last two months of pregnancy as the time things started to go wrong. She had been diagnosed with polyhydramnios, meaning there was excess amniotic fluid in the womb. Her doctor had scheduled additional weekly testing.
One of those ultrasounds revealed problems with the blood flow in the umbilical cord. Reese’s cord also appeared to be wrapped around her neck, Amanda said later, but was told that was less of a concern, since it occurs in about 20% of normal deliveries. At another appointment, Amanda’s medical records show, Reese failed the portion of a test that measures fetal breathing movements.
At 37 weeks, Amanda told one of the midwives the baby’s movements felt different, but, she said, the midwife told her that it was common for movements to feel weaker with polyhydramnios. At that point, Amanda felt her baby was safer outside than inside and, her medical records show, she asked to schedule a C-section.
Despite voicing concerns about a change in the baby’s movement and asking to deliver earlier, Amanda said she and her husband were told by her midwife she couldn’t deliver for another two weeks. The doctor “continues to advise 39wks,” her medical records show. Waiting until 39 weeks is usually based on a guideline that deliveries should not happen before then unless a medical condition specifically warrants it, because early delivery can lead to complications.
Amanda would have to wait until 39 weeks and one day because, she said, her doctors didn’t typically do elective deliveries on weekends. Amanda was disappointed but said she trusted her team of doctors and midwives.
“I’m not a pushy person,” she said. “My husband is not a pushy person. That was out of our comfort zone to be, like, ‘What are we waiting for?’ But really what we wanted them to say was ‘We should deliver you.’”
Amanda’s final appointment was a maximum 30-minute-long ultrasound that combined a number of assessments to check amniotic fluid, fetal muscle tone, breathing and body movement. After 29 minutes of inactivity, Amanda said, the baby moved a hand. In the parking lot, Amanda called her mother, crying in relief. Four more days, she told her.