Cruelest mystery: death before life

Stillbirth: Researchers hope their new efforts will reduce the incidences of unexplained loss of infants in the last days of seemingly normal pregnancies.

March 24, 2002|By Diana K. Sugg | Diana K. Sugg,SUN STAFF

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.

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