Summer 2011 /Birth & Death/

Born Still

About 25,000 stillbirths are reported in the U.S. each year, and parents often are left with no explanation. Elizabeth McPherson '71 looks for answers, taking on the mystery of death inside the womb.

ON A COLD AFTERNOON in the Marshfield Clinic in a small Wisconsin town, Elizabeth McPherson ’71 plucks the top envelope from a pile of big white envelopes and opens the mystery of another stillborn baby. “Let’s see what’s in here,” she says.

She pulls out a sheaf of documents, a disc of photos. She reads.

The mother: age 34. Four pregnancies. Diabetes and high blood pressure. No children born alive.

The baby: age 34 weeks and six days. Five pounds, one ounce. Identified only as “BabyGirl.”

The mysteries that land on McPherson’s desk come from all over Wisconsin. From paper-mill towns and Amish enclaves, from collegiate Madison and big-city Milwaukee, from farmlands dotted by red barns.

So many stillborn girls and boys. McPherson picks up an Xray. She holds it above her head and studies the image, the small bones backlit by the sharp winter sun.

“The reason you don’t see the heart here,” she says, “is that this baby never took a breath.” The heart, she explains, is obscured because the lungs are filled with amniotic fluid, which has the same density as muscle. An X-ray can’t detect the difference.

What went wrong for BabyGirl?

There was a time, not so long ago, when no one would have investigated. A baby who was born still—who emerged into the world with no flailing arms, no gasp for breath, no cry—was apt to be whisked away, unseen by the mother and unstudied by doctors. In a 2011 issue dedicated to stillbirth, The Lancet medical journal called it one of the most shamefully neglected areas of public health.

McPherson is helping to change that.

As head of the Wisconsin Stillbirth Service Program, the most comprehensive program of its kind in the country, McPherson, who is also the clinic’s director of medical genetics, gathers data on the state’s fetal deaths.

Photos, doctor’s notes, hospital files, X-rays, autopsies when possible. She scrutinizes whatever she can get for clues to causes and prevention.

There’s something else she looks for, too: how to console parents blindsided by a loss as ancient as life itself. She wants to make sure that parents get the chance to see and touch their stillborn baby, to grieve as any parents might.

No woman—she heard this story once—should have to go to the grocery store to weigh a cucumber because that’s the only way she’ll ever know what her stillborn baby’s weight might have felt like in her arms.

MCPHERSON WAS IN MEDICAL SCHOOL the first time she saw a stillborn baby. She was shocked. And fascinated.

“I was young, not married,” she says. “I wanted to have children someday, but way down the road. I don’t think I felt the pain in the way I would have later on.”

She had wanted to be a doctor since she was a girl cobbling together an oxygen tent for a doll out of Tinkertoys and saran wrap. But female doctors were rare in 1967, the year she entered Pomona College, and women on campus were still bound by rules as tight as corsets.

If McPherson wore slacks to the lab and didn’t have time to change into the requisite skirt before dinner, she’d miss the meal. If she stayed late in the library, she might blow the curfew imposed on the women’s dorms and have to sleep, stealthily, in some guy’s room. In the dining halls, as she recalls it, a monitor ran a hand down the backs of female students to make sure they were wearing bras. She was the only woman in her accelerated chemistry course.

But she loved her classes. Shakespeare for fun. German, the language of scientific papers. Zoology, where she dissected a fetal pig and realized she would never see a human fetus as anything other than a human being.

One class in particular steered her future. It was genetics with Larry Cohen. She liked the genetic puzzle; Cohen liked her good mind.

“And Professor Cohen thought good minds were wasted in medicine,” she says.

Cohen scored her a summer job at Johns Hopkins University studying the genetics of bacteria with Dr. Hamilton Smith, who went on to win a Nobel Prize. Among the things she learned that summer was that she wanted to work with people, not bacteria.

She took her interest in genetics, along with a summa cum laude degree from Pomona, to the University of Washington Medical School, then on to graduate studies at the University of Wisconsin.

In the next few years, she married Owen Christianson, a nuclear engineer; had three healthy children; and made a career as a geneticist who specialized in birth defects. She went on to hospital jobs in Buffalo, then Pittsburgh. At each stop, her genetics expertise drew her deeper into the mystery of babies who didn’t survive the womb.

In 2003, McPherson landed a job at the Marshfield Clinic. The hub of 54 small community care centers, the giant clinic is the economic engine of Marshfield, a town whose other claim to grandeur is the World’s Largest Round Barn.

Her youngest child was almost out of high school by then, and she was tired of the relentless demands of a big-city hospital. As the daughter of an itinerant Navy chaplain, she was accustomed to starting over in new places.

On the snowy evening she arrived in central Wisconsin, members of the Society for Creative Anachronism’s local chapter showed up to help her unload. She has been active in the organization since her 20s, attracted by its mission to re-enact the customs of medieval and Renaissance Europe Work at the busy Marshfield Clinic, however, would limit the time for her alternate identity as Elspeth, a 10th century Scottish woman who enjoys single-needle knitting, Renaissance dancing and cooking Viking-style.

At the clinic, she connected with the Wisconsin Stillbirth Service Program, founded in 1984 by Richard Pauli, a University of Wisconsin geneticist whose experience with his own stillborn son convinced him of the need for better research. When he announced his retirement after more than two decades, McPherson knew what she had to do.

“When I heard the program was going to end,” she says, “I said, ‘That can’t happen.’ I said I’d take over.”

STILLBIRTHS HAPPEN ALMOST AS OFTEN as the deaths of newborns. About 25,000 are reported in the United States every year. In nearly half the cases, the cause is unclear.

Technically, the term “stillbirth” is applied to fetuses who die in the womb after the 20th week of pregnancy. McPherson will investigate any birth after 13 weeks.

“I have occasionally looked at younger babies, an inch long,” she says. “If you find something and it looks like a baby, I’m willing to look at it. I’m sorry about using ‘it,’ but you can’t tell the gender until 13 weeks.”

McPherson uses the word “baby” when some others might say “fetus.” She is nevertheless careful to say that, although she wouldn’t have an abortion even if the risk of stillbirth was high, she doesn’t counsel against it. “In genetics,” she says, “we try to be non-directive.”

NO TWO STILLBORN MYSTERIES ARE exactly the same. This is Hayley Patoka’s story.

“It took us a year and a half to get pregnant,” says Patoka. “We were so excited. Everything seemed to be going well, even though the baby was measuring small.”

Patoka, a 29-year-old children’s counselor who works down the hall from McPherson, tells her tale one quiet Saturday morning sitting at a round table in a little clinic room. McPherson leans on a hand, listening.

At first, Patoka goes on, she thought the pain in her sternum was heartburn. Her obstetrician recommended Pepto Bismol. A few nights later, the pain was so intense that she curled upon the floor and stayed there until morning, her husband by her side.

The next day, at her mother’s insistence, she went to the doctor. Could be gallstones, she was told. The ultrasound told her the truth.

The following night, 22 and a half weeks into her pregnancy, she delivered a lifeless baby that weighed a little over half a pound.

“They cleaned her up,” Patoka says, “brought her back. We had time to hold her. We took pictures.”

The baby wore a tiny knit cap. Moldings were made of her hands and feet. Cremation was scheduled.

Such parting rituals for a stillborn were once rare, and Patoka was grateful for the kindnesses. But she wanted something more: an explanation.

“You’re looking for something to help close those doors,” she says.

She spent hours on Google, trying to figure out what had failed. Then co-workers suggested she enlist McPherson who was, after all, just a few doors down.

“Before I met with Hayley and her husband,” McPherson says, looking Patoka in the eye, “I went through their records.”

McPherson has her own rituals when addressing the parents of a stillborn. Over and over she tells them their child was beautiful. Not your fault, she says, not your fault.

If the child has a name, she repeats it.

“I looked at beautiful photos of their little girl,” she says now. “Looking at Gabriella’s body, I knew she had been dead for a few days. We talked about how beautiful she was. And how to keep it from happening again.”

As often as not, McPherson can’t figure out what happened. This time she knew.

Patoka had a condition called HELLP, a syndrome that involves the liver, and her unusually small placenta was unable to nourish the fetus. The placenta’s failure is a common cause of stillbirth.

Patoka plans to get pregnant again, but this time under the supervision of a specialist recommended by McPherson.

“I wish I could give you better news,” McPherson tells her. “It helps just to have an acknowledgment,” Patoka says. “An acknowledgement that it was a child, that this wasn’t just some mass of cells.”

IF MCPHERSON HAD BEEN BORN a thousand years ago, she would have been a midwife.

She says this as she drives past snowy fields near the airy log home that she and her husband built on former farm land.

She is recounting the time a midwife called her at 3 a.m. The midwife, who serves the local Amish, had just delivered a baby with birth defects. Would McPherson come look?

She drove the narrow winding roads in the dark that night. The baby was dead when she arrived. She immediately took the father, his infant in his arms, for X-rays, which showed that the baby’s ribs were too short to make room for lungs. Then she went on in to work.

“I had a chance to help a family that wouldn’t have gotten help,” she says.

Some weeks her clinic cases keep her so busy she doesn’t have time to promptly investigate the stillbirth cases that land on her desk, or the ones she witnesses when she’s summoned to a hospital bed. If she gets home before 8, her husband says, “You’re home early.”

But all her work is of a piece: babies who die before they leave the womb; newborns who exit the world almost as soon as they enter; children with birth defects who grow into adults. They’re all part of the genetic mystery that she seeks to solve, with the belief that understanding stillbirth will illuminate the rest.

Sometimes the sight of another stillborn baby, or a parent of that baby, makes her cry.

“I don’t see anything wrong with that,” she says. “People want to know that you feel something of their grief.”

And if it seems she dwells too much in death, McPherson doesn’t think so. In her view, things connect. The Middle Ages and now. The womb and the outer world. Life and its opposite.

“Whenever you think about birth,” she says, “even without thinking about stillbirth, you have to think about death.”