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Cruelest mystery: death before life

That chilly night in late October, the delivery room was so quiet. The doctor wrapped the 8-pound, 21-inch newborn girl in a pink-and-blue striped cotton blanket, pulled a matching cap over her brown hair and gently passed her to her mother.

Margarete Heber cradled the baby. In the dim light, Heber could see the infant had her dark eyes, turned-up nose and distinctive chin. Perfect, except she was tinged blue. She had died just hours before she was born. Her birth would be her good-bye."I am sorry," Heber whispered, kissing her stillborn daughter on the forehead. "I am so, so sorry."

Heber would never know what killed her child. In a time when surgeons can operate on fetuses, when parents can select the sex of their offspring, when physicians can screen embryos for genetic diseases, medicine has no answer for stillbirths. They are one of the last, great mysteries of obstetrics.

But the death of Heber's daughter, Elisabetha, that night in 1998 would be the catalyst for researchers taking on this puzzle. Heber, a scientist, started digging in medical databases and libraries.

She discovered that thousands and thousands of babies, many full-term, are dying every year, and few researchers have ever investigated why. Now, spurred by Heber, leaders at the National Institute of Child Health and Human Development are making stillbirths their No. 1 priority.

"Stillbirths are a huge problem. Research is just so desperately needed," said Dr. Cathy Spong, a top physician who oversees research funding. "I was shocked at the numbers."

Even though the rate of stillbirths in the United States has dropped since the 1960s, there are nearly as many cases today - about 26,000 a year - as there are deaths of babies in the entire first year of life.

One major study found that stillbirths are five times more common than sudden infant death syndrome. Hundreds die every year in the Baltimore area, and three local hospitals have created special gravesites for these stillborn babies.

But many parents, like Heber, won't ever know what went wrong.

Scientists can't say exactly how many stillbirths there are, who is at risk for them and how they can be prevented. They don't know why black women have twice the risk of other women. They don't know whether women whose mothers suffered stillbirths are at higher risk, or why some women have repeated stillbirths.

There isn't even a uniform definition of stillbirth, though most doctors consider it the loss of a pregnancy at 20 weeks' gestation or later. Technically, even though many are full-term, stillborn infants aren't even considered babies. They never took a breath, so they are labeled fetuses. And families say they are forgotten.

"With children who are stillborn, no one ever saw them. It's a lot easier just to sweep them away," said Fran Howard, an Ellicott City woman who lost her first child, a boy, seven years ago on his due date.

Doctors don't know why he died. Howard didn't get a birth certificate for Michael Francis; she was issued a fetal death certificate. Afterward, some friends and co-workers never said a word to her.

"That baby was real to me the moment I knew he was there," Howard said. "It's like losing a part of your heart."

Scientists believe stillbirths hold crucial insights about pregnancy, childbirth and birth defects. And with the National Institutes of Health putting stillbirths at the top of its agenda, researchers are hoping to explore questions that have haunted them for years: Is a condition similar to sudden infant death syndrome - SIDS - killing some of these babies? Could screening tests pick up babies in distress and save them?

The NICHD has already begun a survey of obstetricians and gynecologists around the country, to see how they handle these cases. And Maryland is preparing to issue its first-ever fetal mortality report.

But to find answers, researchers will have to overcome a long legacy of secrecy, the sense of stillbirths as taboo.

For generations, nurses hustled stillborns out of the delivery room without showing them to the mothers. Hospitals disposed of most of the babies as pathological specimens. And scientists, like much of society, wrongly assumed that women would be too traumatized to discuss their tragedies - and too emotional to give researchers reliable information.

Even today, there is no consistency in how hospitals handle the cases. Many don't follow the standard evaluation recommended for stillbirths. And because of the cost and the need for perinatal pathologists, experts say relatively few autopsies are done.

These problems lead to poor data in the fetal mortality reports. Funeral directors or pathologists, not the women's doctors, often complete the forms, and studies have found the cause of death to be misleading almost half the time. On top of this, experts say the number of stillborn babies is underreported.

"In most states, we get a mismatch of garbage being reported on these records," said Dr. Russell Kirby, a perinatal epidemiologist at the University of Wisconsin Medical School who did the studies. "It's a travesty."

Maryland is one state trying to do a better job. Health officials have revamped the fetal death certificate and sent staff into hospitals to push physicians to fill out the forms more carefully. The new data, to be released in a few weeks in the state's first fetal mortality report, show disturbing trends.

Adolescents under 18 had the highest stillbirth rate, roughly twice that of women ages 20 to 34. And after years of declining rates, the state's fetal mortality rate increased in the past several years, although it's unclear why.

The report revealed another surprise: In 2000, Maryland recorded 658 fetal deaths, 20 percent more than the number of infant deaths, a problem on which authorities focus so much money and research.

"This is a serious problem in Maryland," said Isabelle Horon, director of the state health department's Vital Statistics Administration. "It's really important that we put an effort into figuring out what is going on and why."

With so little attention paid to stillbirths, most pregnant women rarely hear about the possibility. They feel safe after they've passed the first trimester, when most pregnancy losses occur. Heber, who works as an aquatic toxicologist at the U.S. Environmental Protection Agency, thought no one could lose a baby, not so close to delivery. Not in 1998.

But a few days before her due date, she noticed the baby wasn't moving much. Doctors didn't find any problem. Two days later, the Northern Virginia woman woke up feeling ill and feverish. At first, physicians at the hospital said something must be wrong with the fetal monitor. So they tried a second monitor, a third, and then a portable ultrasound. They called in a chief resident and a radiologist.

"We're sorry," they finally told her. "There is no heartbeat."

Later that night, after he delivered her stillborn baby girl, Heber's physician sat in the corner of her hospital room, his head in his hands. "I don't know," he was saying. "I don't know."

In the following weeks, after genetic analysis, hormone tests, blood work, and even an autopsy, no one else could tell Heber why either. Even though about 20 percent of stillbirths, or 5,000 babies a year, are full-term, and even though they undergo extensive testing, most of the time, as in Heber's case, not a single clue will turn up. The babies appear as healthy as any in the nursery. Doctors don't know the cause of more than half of all stillbirths.

"This shouldn't be happening anymore," said Heber, 46. "Babies don't die the day before they're supposed to be born."

But thousands of healthy women discover just that.

From the moment Liz Norton found out she was pregnant on Valentine's Day 1999, the 28-year-old Annapolis woman felt strong. Every test was normal, every week typical.

Norton and her husband, Jack, played music and read Good Night, Moon and Runaway Bunny to their developing child. They planned. Their extended family couldn't wait for the arrival of the first grandchild.

But in late August, more than eight months into the pregnancy, Norton noticed after an evening Lamaze class that the baby was quiet. She calmed her fears, only to wake up about 2 a.m. panicked, in a cold sweat.

At nearby Anne Arundel Medical Center, doctors hooked her up to a sonogram. The baby had died. Soon, there were few sounds except Norton's sobs, echoing through the hospital hall.

Early the next morning, doctors gave her drugs to deliver the baby, and during two full days of labor, Norton and her husband had to decide on an autopsy and funeral arrangements for the child they hadn't seen or touched. At 10:30 p.m. Aug. 27, Liz Norton delivered a boy. His father held him and recognized his own features in his son's face.

"It was all very cold," Norton remembered. "Very quiet."

As at other hospitals including St. Joseph, St. Agnes and Mercy medical centers, staff at Anne Arundel recognized the Nortons' son as they would a healthy birth. Nurses saved the boy's footprints. Jack Norton bathed the baby. The couple took pictures. And past midnight, with family all around, a minister held the infant in his arms and baptized him Chandler John, or C.J., in honor of his grandfathers.

A year later, when Liz Norton gave birth to a healthy daughter, Kelsey Ann, she would look back on her first pregnancy and realize her son had moved much less than Kelsey. But no one could tell her whether that was a sign of trouble. And to this day, no one knows what went wrong.

Many women end up blaming themselves, at a time when their arms are aching to hold their babies, and their breast milk is painfully coming in. For weeks, some are haunted in the night by the sound of a baby crying, and they search their homes in vain.

Friends and relatives tell these women that they are young, that they will have another baby. But often, their confidence as mothers is shattered.

"My perfect little family was going to be all set. The guilt was overwhelming," said Loretta Gallup, 38. She was five months pregnant in 1996 when she lost the baby, a boy, named Patrick Edward. Her parents and her physicians at St. Joseph Medical Center told her it wasn't her fault. But it didn't comfort the Parkville nurse.

"If you don't know what caused it," Gallup remembers screaming at them, "how can you say it's not my fault?"

Researchers such as Dr. Ruth Fretts at Harvard Medical School have started to tease out some risks, factors such as mothers being obese, over age 35, or having their first child. Other studies have implicated smoking. But little is known about these risks, and many women who had stillborn babies don't fall into any of these categories.

Last year, at the first stillbirth conference held at the NICHD, Spong and another leading maternal health expert, Dr. Marian Willinger, gathered researchers to hash out the most pressing questions. Scientists want to determine whether there is a connection between SIDS and stillbirth. They want to learn more about a clotting disorder, thrombophilia, that might cause stillbirth. They also want to explore what biological and genetic factors protect women from stillbirths, and which factors put them at risk.

These and other issues, like the racial disparity and better data collection, are likely targets for research funding next year under the NICHD's new stillbirth initiative.

One of the few research programs dedicated to stillbirth, the Wisconsin Stillbirth Service, has trained nurses and doctors in a standard protocol and evaluated about 1,600 cases over the past 19 years. Dr. Richard Pauli, a pediatrics and genetics professor at the University of Wisconsin-Madison, created the program after losing his own stillborn son. He tries to diagnose the cause of death, and he has found that roughly 50 percent of the cases are a mystery.

About 25 percent have a fetal cause of death, such as birth defects, genetic anomalies and malformations. The remaining stillbirths are caused by such conditions as placenta problems, maternal infections and cord accidents.

One scientist believes that umbilical cord problems are killing far more babies than anyone realizes. Dr. Jason Collins, a New Orleans obstetrician who has studied 400 cases, says many full-term babies die between midnight and 6 a.m.

When a mother is sleeping, her blood pressure drops, he says, diminishing blood flow and oxygen to the baby. In reaction, a baby might kick and move, entangling itself in the umbilical cord.

"I truly believe half these babies don't have to die. There's nothing wrong with them," said Collins. While other physicians don't agree with his theory, Collins recommends that a woman in the late stages of pregnancy be aware of her baby's behavior at bedtime, and if the baby is sluggish, go in immediately for testing.

Other strategies for prevention include routine care, initiating testing at 36 weeks and early delivery. Some physicians will not let a woman who has had one stillbirth carry her next pregnancy a day beyond when she lost the previous pregnancy. But according to Fretts of Harvard, these strategies are based on little or no data.

Scientists say answers will be difficult to come by. That's because doctors usually don't recognize the problem until after the baby has died. By then, clues they might see in a live infant have disappeared. And it's tough to do clinical trials and research on someone's developing child.

"Pregnancy is a black box that people don't want to get too invasive with, because you don't want to harm the outcome," said Spong, chief of the NICHD's pregnancy and perinatology branch. "This is the most precious thing in the world - your child."

But parents are pushing for research. They're also putting together support groups and working to change state laws - similar to what Arizona recently did - so stillborn babies can get birth certificates.

"In their eyes, if he didn't take a breath, he wasn't a child," said Lisa D'Argenio, 32, a Reisterstown woman fighting to change Maryland law. D'Argenio was nine months pregnant in 1999 when she lost her son, Harley Michael, because of a blood pressure condition, pre-eclampsia. "But in our eyes, Harley will always be our son, whether he's here or not."

More families are taking comfort in burying their stillborn babies. St. Joseph Medical Center holds a twice-yearly service at Most Holy Redeemer Cemetery, where relatives pray and leave white roses. Some couples will walk the old cemetery afterward, holding hands. Some parents return for quiet visits on Easter, Christmas or a child's due date, to leave the presents they never got to give: a Tonka truck, a Barbie doll, a pinwheel blowing and sparkling in the wind.

Tucked in carefully among the toys are handwritten notes that tell of heartbreak. "Happy Birthday to you. Every year, please remember, we will never forget you," said one card. "We love you and miss you. Love, Mommy and Daddy."

Sadly, those rituals will be repeated. Room has been set aside in the graveyard, and in the coming years, hundreds more stillborn babies will be buried here, under the gray stone, in the hard ground.

Copyright © 2015, The Baltimore Sun
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