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
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
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
"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
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
"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
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
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
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.
St. Joseph, St. Agnes, Greater Baltimore medical centers and other
hospitals; new group starting in Westminster, call 410-833-2592.