As the anesthesia wore off, Amanda Duffy kept her eyes shut. Before being sedated for an emergency Caesarean section, she had learned her baby had no identifiable heartbeat and only glimmers of brain function.
Opening her eyes would mean finding out what happened. Eventually, Duffy’s eyelids cracked open to reveal a doctor in tears. The baby had red hair like her father. She was rosy and beautiful. And she was dead — born lifeless with the umbilical cord wrapped twice around her neck.
“That was the saddest moment of my life,” said Duffy’s husband, Chris, “watching my wife cry with the oxygen mask still on her.”
That was four months ago. Now, the Roseville parents want to spare other families the same grief. With a Rogers, Minn., couple that also lost a child, they are lobbying the Legislature for a study to unlock the mystery of stillbirths.
The United States records 26,000 fetal deaths every year. But while infant mortality is considered a major health concern, stillbirths are treated more like family tragedies than medical problems, said Lindsey Wimmer of Eden Prairie, who lost a baby in 2004.
Wimmer formed the Star Legacy Foundation to call attention to the issue, which she believes has been muted by decades of blame and shame on mothers who lost babies to stillbirths. “In this country, 26,000 people dying of any particular thing catches people’s attention,” she said. “But for some reason, this has been a pretty taboo subject for generations.”
Stillbirths, or fetal deaths, are defined in Minnesota as occurring at 20 weeks of gestation or later, but before birth. (Abortions are separate.)
In Minnesota, births are declining but 300 to 400 fetal deaths occur each year — and the rate is rising.
A Star Tribune analysis of state vital statistics found that fetal deaths dropped between 1991 and 2005 — from 6.4 per 1,000 live births to 4.6 — but climbed back to 5.6 in 2013.
That could reflect an increase in high-risk pregnancies involving women who are older, obese or suffering chronic diseases. One of the first national studies of stillbirths found in 2011 that most weren’t predictable, but were correlated with prior miscarriages or stillbirths, first pregnancies, obesity, smoking before pregnancy and gestational diabetes.
Minnesota health officials also suspect rising opiate abuse is part of the problem.
The Duffys suspect another influence: a policy intended to improve birth outcomes.
Tense weeks of waiting
Amanda’s second pregnancy was tougher from the start, with longer morning sickness and exhaustion that she chalked up to caring for her toddler. An ultrasound at 35 weeks showed she had excess amniotic fluid and that her baby would be larger than expected. People kept telling her, “Oh, you must be having twins!”
Tests at the 36th week showed slow blood flow through the umbilical cord and an irregularity in the fetus’ “practice” breathing. An ultrasound showed the cord across the neck, though that’s not uncommon or, necessarily, a sign of trouble.
None of these complications was deemed serious enough to override a policy at the University of Minnesota Medical Center to schedule elective childbirth inductions or C-sections only after 39 weeks gestation. The policy, adopted in 2009, is now widely used because early inductions increase the risk of infant mortality, birth defects and costly intensive care.
So the Duffys waited. They scheduled a C-section for Nov. 3 — 39 weeks plus one day.
At a 38-week appointment, the baby moved just once in 30 minutes, but that didn’t change the plan. On Nov. 2, the Duffys took their son to a park for their last day as a threesome. Amanda couldn’t feel any movement, but didn’t say anything. She ate lunch, which had prompted kicking before, then lay down and waited. No kicking.
Later, at the hospital, a nurse couldn’t find a heartbeat. A doctor rushed Amanda into surgery and performed the C-section.
When it was over, the Duffys spent 24 hours in the hospital, taking pictures and holding their lost baby, named Reese, before saying goodbye.
While acknowledging the risks of premature birth, Chris said he is left to wonder “what if” he had fought the 39-week policy. “That’s what killed our baby, in our opinion.”
One study supports his suspicion. A Wisconsin researcher compared 12,000 births at a large hospital before and after a 39-week policy took effect, and found the desired result — less intensive care for newborns — but also a threefold increase in full-term stillbirths.
Larger studies have discredited that finding, said Dr. Jeff Schiff, medical director for Minnesota’s Medicaid program, which also backs the 39-week policy. He wants more research on why fetal deaths are rising, but warned against “conflating” stillbirths with the 39-week rule.
Hoping to help others
The Duffys wonder about missed opportunities. But they aren’t angry at the caregivers who were so compassionate, and they are pursuing legislation to benefit others rather than a lawsuit. “It’s not going to bring her back,” Amanda said.
Rep. Alice Hausman, DFL-Minneapolis, and Sen. John Marty, DFL-Roseville, have expressed interest in creating a state stillbirth task force.
Chris Duffy hopes Minnesota will follow the lead of Iowa, which has used federal grants to gather data on stillbirths. Adding data from New York and Denver, Iowa researchers are hoping for a breakthrough on the underlying causes of fetal deaths.
Five Iowa women who experienced stillbirths, including state Sen. Janet Petersen, launched a statewide campaign in 2009 for women to track kicking behavior, a sign of fetal health. Whether that’s had any impact is unclear, but Iowa’s stillbirth rate has declined 30 percent since then.
“These babies don’t just die overnight,” said Petersen, who lost a girl in the ninth month of pregnancy. “There are indicators.”