A young woman barely out of her teens kneels before a grave in a Culver City cemetery. Carved into the headstone is a picture of Minnie Mouse. The dates of birth and death stand like bookends to a too-slim volume, a life that lasted just 43 days.
The baby was born with no eyes, a spare finger and a bad heart. An unforeseeable genetic aberration, the doctors said. They gave her a year to live, but she sank into a coma at six weeks, leaving her teen-age parents to decide whether their child should live or die.
They dressed the body in a doll-sized baptismal dress. They placed it in a Styrofoam coffin wrapped in pink satin and white lace. She was buried on a broad green lawn shaded by twisted junipers, in what her mother calls the cemetery’s “baby section.”
Now the young woman, Mirian Soba, brings flowers to her daughter’s grave. She scans the rows upon rows of narrowly spaced headstones. How did all these babies die, she wonders each time she visits. How could this have happened to them?
There is a room on the ground floor of a downtown Los Angeles office building where the county health department stores its death certificates. Into innumerable manila folders, clerks stuff the perfunctory paperwork on infants who died before reaching age 1.
Gonzalez, Sarkissian, Abusalem, Phung, Dhaliwal, Wojciechowski, Jones: Their names span the vastness of Los Angeles County. They are the children of police officers, dentists, actors, bookkeepers, prostitutes and high school seniors.
The causes of their deaths range from negligence to blind bad luck, quirks of birth that doctors are powerless to explain. They died of infectious diseases, sudden infant death syndrome, birth defects, accidents, pregnancies gone inexplicably awry.
Others died for reasons neither inexplicable nor unavoidable. Their deaths, and sometimes their births, could have been prevented. Instead, they arrived unplanned, unwanted, addicted, infected. For many of them, death was the price of being born too soon.
But all are part of a disturbing trend: The infant death rate in Los Angeles County has crept upward, especially among blacks and Latinos. Each day, on average, five babies die. Amid the extraordinary wealth of Southern California, Los Angeles County’s rate is little better than the national average.
The United States, which once had one of the lowest infant death rates in the world, has been outstripped recently by much of Europe, Scandinavia and Asia. Since the 1950s, the U.S. rank has fallen from sixth to 20th; Japan’s has risen from 17th to first.
Ireland, the poorest nation in Northern Europe, does better than the United States. The United States barely outranks Czechoslovakia. Black babies in the United States have no better chance of surviving until their first birthday than babies born in Costa Rica.
In many ways, infant mortality is a barometer of a nation’s health and health-care system. It illuminates a society’s successes and failures. In its patterns lie the patterns of broad social inequities--in opportunity, education, income and quality of life.
The problem has not gone unnoticed in the United States. There have been commissions, task forces, federal reports on the subject. Recommendations have surfaced and resurfaced. But the will to take them seriously is missing.
One reason may be that infant death is invisible to many people. There is something unspeakable in a child’s dying, so we are spared the details. Families find themselves alone with a tragedy others choose not to confront. The experience goes unshared.
As a result, infant deaths become mere statistics in the calculation of medical successes and public policy failures. Fleshless and bloodless, they rattle the public mind, but they fail to penetrate the heart.
The human toll is quietly overlooked.
Like many infant deaths, the death of Sheryl Shapiro’s son is a mystery. He was born unexpectedly in a San Fernando Valley hospital at just 24 weeks’ gestation. He lived, according to the death certificate, just 24 minutes. He died of extreme prematurity.
Shapiro is a well-educated, middle-class woman. She has worked in the fashion industry and is married to a dentist. They live in a cream-colored house atop a hill in a gated community in Calabasas. She was 34 when she became pregnant last October. She had no shortage of medical care or insurance to cover it.
Her pregnancy, nevertheless, was not easy. There was some early bleeding, questions about the placenta, a possible murmur in her heart. She had four ultrasounds in three months. Then, in her 24th week, she found herself suddenly in the hospital in pre-term labor.
Prematurity--being born before 37 weeks’ gestation--accounts for a large percentage of all infant deaths. It is also the cause of innumerable health problems, the painful consequences of being born with immature lungs, liver and immune system.
The causes of prematurity are not well understood. Some are known, such as maternal hypertension, diabetes or heart disease. Hemorrhage, which can occur if the placenta separates from the uterus, can also be a cause. But 40% of all premature births go unexplained.
“We put so much faith in our doctors,” Sheryl Shapiro muses bitterly. “I’m sure it’s a cliche to say that we treat them as gods, but we do. . . . Here I was in the hospital about to lose a child, and I’m still believing, ‘I’m here, I’m safe.’ ”
At first, drugs seemed to slow the contractions. But late in the night of March 6, they resumed. The baby was born shortly after midnight, weighing little more than a pound. Because his lungs were insufficiently developed, he could barely breathe.
Shapiro remembers asking for him, holding him, kissing him as he died--slowly, while doctors worked between her legs to extricate her placenta. She remembers collapsing, wailing in hysterical grief, then sedation. When she recovered, the baby was gone.
The doctor came in to talk the next day. I just kept going, ‘Why?’ Over and over. ‘What happened?’ After you put so much faith and trust in these people, to hear an ‘I don’t know’ doesn’t cut it. Well, goddamn it, I want to know. Find out why!
The pathology tests (on the placenta) came out negative. There was absolutely, physically nothing wrong. Which almost makes me angry. It’s like I want something to be wrong. I want to blame this on something. I want to direct my anger somewhere.
As my doctor said to me, ‘We know a lot about the fetus. We know a lot about the baby because of amniocentesis. What we don’t know a lot about are placentas. It’s a home for your baby to live in, and they all act differently.’
My God, we know so much in medicine today, why don’t we know enough about a home that our infants are living in for nine months? Why, as a healthy, educated woman who had nothing but excellent medical care, why did this happen to me?
William Crosby was born three months early and weighed 2 1/2 pounds. His 24-year-old mother had no prenatal care. When she turned up in labor at a Sun Valley hospital on June 27, 1988, she had traces of cocaine in her system.
She called the baby William for a couple of days. Then she renamed him Brandon, after the man she had concluded was his father. Later, the baby’s foster parents changed his name again, to Rusty, after the bailiff on a favorite television show, “The People’s Court.”
The baby spent his first two months attached to a respirator in a neonatal intensive care unit. He had respiratory distress syndrome, a condition common in premature babies in which their tiny, barely developed lungs leave them with a life-threatening shortage of oxygen.
Three times, physicians tried to wean him from the respirator. Each time, they failed. Fearing that his throat was narrowing from a combination of causes, his doctors cut a hole in his windpipe and slipped in a tube. He was finally able to breathe on his own.
By age 2 months, Rusty had grown to 3 pounds, 10 ounces. He fit in the palm of his foster father’s hand. When the baby’s weight edged up a month later to five pounds, the hospital allowed the foster parents, Rod and Merry Lloyd, to take him home.
He moved into their big, sunny house in a eucalyptus grove in Sunland surrounded by geraniums, purple ice plant and a broad, green meadow. There, Merry Lloyd set herself a seemingly simple goal--getting the baby’s weight up to 10 pounds.
It wasn’t an easy life. But, after all, it was life.
His prematurity had left Rusty with serious problems with his heart and his breathing; from time to time, one or the other would stop. A monitor strapped to his chest would set off an alarm that sounded something like the timer signal on a microwave oven.
He also turned out to have a double hernia requiring surgery. There was more abdominal surgery after that, pneumonia and more hospitalization. He needed special breathing equipment, and the Lloyds kept a small pharmacy near the spice rack in the kitchen.
But as the year wound down, Rusty grew. He discovered baby oatmeal and applesauce. The tube in his throat prevented him from uttering a sound, but Merry Lloyd says hopefully, “I think if he could have cooed, he would have. There were times when he was happy.”
Once, a camera captured Rusty smiling--a small boy with deep brown eyes, arched brows and a valentine-shaped mouth. And on New Year’s Day, 1989, at nearly 6 1/2 months old, Rusty did for the first time what others do at half his age: He reached for a toy.
Ten days later, he was dead.
An autopsy traced the death to the many consequences of prematurity, complicated by what the coroner called a history of neonatal cocaine withdrawal. The child simply stopped breathing while curled in Rod Lloyd’s lap, as “The People’s Court” flickered on the TV screen.
Paramedics spirited the dying baby to the nearest hospital. An ominous message and an empty house greeted Merry upon her return from work. She raced to the hospital and into the emergency room. By the time she arrived, her child was beyond hope.
“When I burst in, they said, ‘We’re sorry, we did all we could,’ ” Merry Lloyd remembers, tears tumbling off her cheeks into her lap. “And the doctor said, ‘This baby shouldn’t have lived this long.’ I wanted to turn around and slug him.”
Parents describe a baby’s death as an excruciatingly lonely experience. Outsiders, not knowing how to respond, often seem not to care. Some seem not to understand how the death of a child that lived just hours or weeks could cause such a painful wound.
Kathryn Liddicoet returned to work eight weeks after her day-old daughter’s death. A banner in the office said, “Welcome Back.” “But nobody said anything to me,” Liddicoet recalls. “It was as if I had gone for a tonsillectomy.”
Janet and Rod Jones of Palmdale lost their 10-week-old son, Patrick, in February to a form of congenital heart disease that affects 50 in 100,000 babies. Colleagues have since veered out of their way to avoid Rod. Some have wondered why he keeps a picture of his son at work.
Well, at least he was young, people say, in a bumbling stab at consolation. At least you didn’t have him that long. It happened for a reason. If he had lived, there would have been problems. Time will heal. Get on with your life. You’ll have another.
Parents have arrived at mortuaries to find their children barely recognizable, from the autopsies done in cases of unexplained infant deaths. Skulls have been hacked open and awkwardly stitched. One woman found her twins stuffed in a single, too-small coffin.
And as Rod Lloyd sat outside the hospital emergency room awaiting word on his foster child, Rusty, he recalls one of the paramedics who had transported the baby walking past: “His comment was, ‘You need to trim those bushes on your drive. They scratched my van.’ ”
Tracey Johnson, 27, lives in a public housing development in Long Beach. She dropped out of high school at age 16 to give birth to her son, now 11. She supports herself through public assistance and has never worked. She is studying for a high-school equivalency exam.
Johnson’s health care, because she is on welfare, is covered by the state’s Medi-Cal insurance program. But she rarely sees a doctor and forgoes regular gynecological checkups. She has had several abortions because of lapses in her use of birth control.
In 1988, Johnson and her boyfriend decided to try to have a second child. As Johnson tells it, she became pregnant in September but didn’t realize it for four months. Her periods are usually irregular, and she was losing weight, instead of gaining, she recalls.
In December, Johnson began throwing up. A test confirmed she was pregnant. She turned to the telephone book for an obstetrician, but found that most refused to take Medi-Cal patients. The reimbursement rate was too low, they said, and liability too high.
Finally, a friend referred Johnson to her obstetrician. He agreed to deliver Johnson’s baby and provide prenatal care--that crucial course of monthly, biweekly and then weekly visits that medical experts agree should ideally begin as soon as a woman is pregnant.
In Johnson’s case, it began in her fifth month.
It is widely accepted that prenatal care works. But there is a scientific problem in pinpointing why. Many studies of its effectiveness have not defined its content clearly, so it has not been possible so far to trace its benefits to specific components.
Nevertheless, its overall benefit is clear. Women who do not get prenatal care are at high risk of having a child born dangerously underweight. And low birth weight babies, born at 5.5 pounds or less, face 40 times the normal risk of dying in the first four weeks of life.
Low birth weight, experts believe, explains much of the difference between the infant death rates of the United States and other developed countries. But why the low birth weight rate in the United States might be especially high is not easily answered.
The prime causes of low birth weight are prematurity and poor fetal growth. Many of the causes of those conditions are not well understood. What is known is that there are a number of factors physicians use to identify women at risk of having a low birth weight baby.
For example, women under 17 or over 34 are at risk. So are black women, poor women, unmarried women and uneducated women. So are women with diseases like diabetes and hypertension and women who have had previous problems in bearing children.
Then there are risks that occur during pregnancy: Poor weight gain, early bleeding, placental problems, anemia, infections. Women with closely spaced pregnancies, premature rupture of membranes and excessive vomiting are also at risk.
Finally, there are behavioral and environmental risks: Smoking, drug and alcohol abuse, poor nutrition, high altitude, exposure to toxics. And there are health-care risks, the most common of which is inadequate prenatal care.
About 74,000 pregnant women in the United States received no prenatal care in 1987--a figure that was up 50% from 1980. During that period, the percentage of women getting very late or no prenatal care rose from 8.8% to 11.1% among blacks and from 4.3% to 5% among whites.
The reasons behind those figures are complex. Some women cannot afford prenatal care, others have insurance that doesn’t cover it. Some can’t find doctors, some just don’t get around to it. Others don’t understand the importance of prenatal care.
By any measure, Tracey Johnson was at high risk.
But that first prenatal visit in late January in her fifth month of pregnancy turned out to be her only one. Shortly afterward, on the morning of Feb. 8, she awoke in pre-term labor. When she telephoned the doctor, she says, his answering service informed her the doctor wasn’t in.
Johnson walked alone to a nearby hospital. She recalls quibbling with nurses over whether she was really in labor. The baby arrived at noon, weighing just 11 1/2 ounces. Too small and too premature to survive, Chuneice Dejanay Baker lived less than three hours.
The experience has left Johnson bewildered and unhappy. Like Sheryl Shapiro, she is frustrated with her physician’s inability to explain why it happened. In the absence of answers, she blames the health-care system. She does not blame herself.
“They went to school for this,” Johnson complains sadly, referring to doctors. “They should be able to tell me why I went into labor, or give me some kind of idea . . . something to judge why, what happened. You know, not just completely blank.
“Because I want to know so I don’t do it the next time. Maybe, if I could do something different, if it was me. I want to understand it better. But he says he don’t know. . . . I guess people have to believe him. I don’t see no reason for him to lie.”
Other infant deaths are more easily explained. The causes are known and, in many cases, could have been avoided. Often, those babies live for months against extraordinary odds. When they die, they leave behind a tragic sense of waste.
Among the causes of such deaths is the growing problem of drug use during pregnancy, as well as maternal drinking and cigarette smoking. Other causes are exposure, in the womb or during delivery, to infectious diseases, such as syphilis and the AIDS virus.
In such cases, possible answers include education--for example, impressing upon women the dangers of drug use during pregnancy. But infants born addicted also have become a compelling argument for expanding drug treatment, especially for pregnant women.
Similarly, advocates have called for increasing family-planning services and the availability of birth control and screening for sexually transmitted diseases--at a time when some states have attempted to drastically cut back many of those services.
“What is missed is that the baby is an innocent bystander,” says Dr. Gordon Avery, head of neonatology at Children’s National Medical Center in Washington, where drug abuse has helped boost the city’s infant death rate to the highest in the country.
“They didn’t ask to be conceived, born three months early and to have an endotracheal tube jammed down their throat,” Avery says. “So we, who turn away and walk down other side of the street because of aversion to the mother, are forgetting that the baby has no advocates.”
Marcus and Mercedes Brown were doomed from the start. They were born infected with the virus that causes AIDS. When the tiny twins were 3 months old, the staff at Martin Luther King-Drew Medical Center took them into their custody, fearing parental neglect.
Their mother had been infected with the human immunodeficiency virus by her boyfriend. She had given birth to one infected child before the twins, has had several abortions since and has had another child.
“They were emaciated,” recalls Chris Coleman, a longtime foster parent who specializes in children infected with HIV. When Coleman took in the 3-month-old twins, Marcus weighed 6 pounds, 6 ounces. Mercedes weighed just six ounces more.
“They both had distended bellies, and their skin was blotchy. They even scared me. I’m going to be honest with you: They looked so awful. I was afraid I would pick up something. I knew a lot about AIDS then, but their appearance scared me.
Then I had to say, ‘You can’t catch anything from these babies. For God’s sakes, nobody’s been touching them. Pick it up and force yourself!’ I just dug in. I changed the baby, washed him, swaddled him and held him, and I forced myself to kiss him.”
Coleman and her husband brought the twins home to Woodland Hills, where about 70 foster children have come and gone over seven years. There, Chris Coleman set about fending off the infections that bedevil people with AIDS and eventually kill them.
There were bouts of pneumonia. Marcus had gastrointestinal problems. Both babies had thrush, a recurrent fungus infection in their mouths. Mercedes had a chronic cough that never seemed to bring relief, like a car engine failing to turn over.
But they seemed to improve, for a time. They were happy being held. They seemed even joyful riding in cars. While the Colemans played long games of bid whist with friends, the twins sat on either side of Chris, sucking their fingers or gazing into space to the blare of B. B. King.
“The doctors were optimistic. They said they were going to last a long time,” says Coleman. “They weren’t going to tell me, no matter what I asked them. ‘They’re fine, they’re fine.’ And I didn’t believe it. And I was right.”
Mercedes’ health went first. She ended up in Los Angeles County-USC Medical Center on a ventilator with pneumonia. Then her lungs began to fail. Coleman found herself in the hospital, French-braiding the baby’s hair, wondering whom she was doing it for.
Then Marcus came down with pneumonia too. He ended up in the intensive care unit of County-USC. He died first, on Jan. 7; Mercedes followed five days later. The coroner’s office attributed both deaths to pneumocystis pneumonia, a complication of AIDS.
Chris Coleman buried the babies together at Forest Lawn.
“I do not hold it against these mothers.
If I gave them a hypodermic needle of AIDS virus and I said, ‘Here. Give this to your babies. It will kill them,’ what do you and I both know they’re going to do? They didn’t intentionally do this. They didn’t intentionally do it to themselves.
. . . You’ve seen the numbers. It’s always the lower socioeconomic groups that have the low birth weights, a significant factor in infant mortality. I think it’s a social problem.
You can’t turn back the clock and make the parents of these parents do it all over again and parent them right, to where they have different sets of values, better opinions of themselves, to give them better self-esteem.
You can’t do that. What’s done is done. And they’re victims. It’s a vicious cycle.”
Eddie Wesley was called simply “The Baby” for weeks. The hospital where he was born had identified him as Baby Boy Wesley. The social service agency thought his name was David. But when they tracked down his mother, she said the name was Edward.
She was a 26-year-old prostitute and drug user who had her first child at 13, the foster parents were told. A second child had died while she was pregnant with Eddie. The hospital took Eddie into protective custody after blood tests indicated he had been born addicted to cocaine and PCP.
He also had syphilis.
At 10 days old, Eddie went home with his foster parents. He was in withdrawal, the hospital warned them. From time to time, his arms and legs would shake violently, he would gasp for breath, his body would go rigid. The spasms would last up to half a minute.
“You could see that he was terrified by the look on his face,” says his foster mother, Julie Ackerman, who lived with her husband and their three children in Tujunga at the time. “He couldn’t understand what his body was doing.”
As with many drug babies, sucking did not come naturally to Eddie. So feeding was an ordeal. “He wanted (the formula), but he couldn’t coordinate his sucking to get the milk to flow,” Ackerman says. “He’d get frustrated and confused.”
He looked normal and he was healthy, but his responses were not. He was slow to recognize people, to follow sounds and to focus. He was jumpy and rarely slept more than two hours at a stretch. He would wake up and babble himself slowly back to sleep.
Then on the morning of Jan. 28, 1989, in Eddie Wesley’s eighth month of life, Ackerman found the baby lying face down in his crib. When she turned him over, his skin was sallow, one eye open, one closed. His mouth was frozen open.
“I called 911,” recalls Ackerman. “They said ‘Go get the baby.’ He was stiff. I’m walking around carrying him under my arm, hysterically screaming, ‘He’s stiff!’ The guy said, “There’s nothing we can do. Just go put him back in his crib.”
Eddie’s death was attributed to sudden infant death syndrome, the most common single cause of death between the ages of 1 month and 1 year. Its causes are a mystery, though most SIDS deaths are suspected to involve abnormalities in breathing and heart rate.
Ackerman was not told until later--and resents that no one told her--that the child entrusted to her care was at especially high risk of SIDS. SIDS is more common in boys, blacks, low birth weight babies, and among infants born addicted to drugs.
“I’m going, ‘Are you kidding me? Why didn’t anybody tell me?’ I probably would have at least questioned the doctors more. . . . He should have been on a monitor. Had he been on that, there might have been a possibility that we could have saved him.
The state didn’t want to do much as far as burial. They wanted to cremate the body and store the ashes for four years in case someone claimed them. It just rubbed me the wrong way when they told me this was standard procedure. I had loved this baby.
. . . We did get to have a funeral for him. He was buried at Glenhaven Cemetery. It meant a lot to me to be able to give him a decent goodby, to say, ‘You weren’t just this worthless baby that came into this world and left for no reason.’ ”
Rusty Lloyd’s funeral took place on Jan. 17, 1989. The coroner released his body to the funeral director just one hour before. His skull had been cut open for the autopsy, but Merry Lloyd wanted him there. Before the funeral, she hugged him one last time.
The church organist played a strange little tune. It had been adapted from a musical teddy bear that had been a Christmas present to Rusty. Merry remembers the melody vividly. As she describes it, it had a haunting, unfinished quality.
Rusty’s body was cremated, and his ashes placed in a carved wooden urn. The urn sits inconspicuously on a bookshelf in the Lloyds’ living room. “I felt I always wanted him part of our house,” Merry says. “And if we move, we’ll take him with us.”
More than a year after his death, she weeps to remember him.
“He changed our lives,” she says quietly. “We’ll never be the same again.”
Infant Mortality: Key Statistics Infant Mortality Rates: Comparing Developed Countries Deaths per 1,000 live births, 1988 United States; 10.1 U.S. Rate by Race Deaths per 1,000 live births, 1987 Total: 10.1 White: 8.6 Black: 17.9 Hispanic: 7.9 Chinese: 5.0 Native American: 9.9 California Rate by Race Deaths per 1,000 live births, 1988 Total: 8.6 White: 8.1 Black: 15.8 Percentage of Women Receiving Late or No Prenatal Care in U.S. By Race, 1987 Total: 6.1 White: 5.0 Black: 11.1 Hispanic: 12.7 Asian: 6.0 Native American: 11.7 Percentage of Babies to Women Receiving Late or No Prenatal Care in U.S. By age of mother, 1987 15-19: 12.4 20-24: 7.6 25-29: 4.0 30-34: 3.1 35-39: 3.8 40 and over: 6.2 Low Birthweight Rate by Race in U.S. Percentage of births of less than 5.5 pounds. Figures are for 1987. Total: 6.9 White: 5.7 Black: 12.7 Hispanic: 6.2 Asian: 6.4 Native American: 6.2 Leading Causes of Infant Death in U.S. Percentage of total deaths. Figures are for 1987. Congenital Anomalies: 20.5 Sudden Infant Death Syndrome: 13.6 Unspecified Low Birthweight: 8.7 Respiratory Distress Syndrome: 8.5 Maternal Complications: 3.6 Accidents: 2.5 Infections: 2.2 Source: National Center for Health Statistic and UNICEF Death Rate in Selected Counties Los Angeles County Infant Mortality Rates Rate of deaths per 1,000 live births in specified racial/ethnic groups. After hitting low point in 1986, overall rate has begun to gradually rise. Overall figure for 1989 unavailable. Infant Mortality Statistics in Selected Counties Deaths per 1,000 live births Rates are for 1987, except Orange County, which are for 1988 Orange County Total: 6.8 White: 7.9 Black: 5.4* Hispanic: 5.9 San Diego County Total: 9.6 White: 9.9 Black: 16.4 Hispanic: 8.2 Ventura County Total: 6.4 White: 7.3 Black: 10.2 Hispanic: 5.3 Sources: Los Angeles, Orange, San Diego and Ventura county health departments. (*Orange County health officials say the black rate may be misleading. Because few blacks live in Orange County, there are few births and infant deaths in any year. A small change in the number of deaths may cause a large swing in the rate. The 1987 rate was 13.3)