In bid to save lives, death becomes data

First of three parts

KHANDSARI, Nepal -- On the 16th day of her life, the baby awoke with a choking cry in the pre-dawn darkness of her family's mud hut. xxBhikhari Pasman fumbled to light an oil lamp and saw foam on his daughter's lips. His wife, Rampati, clutched the baby to her breast but found her too weak to nurse.

So the father ran across the sleeping village to wake the shaman, who listened to his panicky words and chanted some magic over a jar of mustard oil. He rushed home and, as instructed, dripped the oil in the ears of the now-unconscious baby.

By the time the sky began to lighten, she was dead. The sixth child born into the Pasman family, she was the third to die. She died without a name, a common occurrence in Third World villages where parents fear that naming a newborn can be an unwise challenge to fate.

But on this morning, a week after the baby was buried on the bank of the Soti River, she has acquired an identity of sorts. Her brief life and sudden death have become data, the precious, impersonal currency of public health research.

The facts of her ephemeral existence, recited by her despondent parents, are inscribed on a form by a soft-spoken interviewer. That form will be compiled with others detailing the first weeks of life for thousands of babies born this year and last in the plains of Nepal.

Stacks of forms will be trucked eight hours on perilous mountain roads to a small office next to a crumbling Hindu temple in Kathmandu, Nepal's capital. The data will be typed into desktop computers and accumulated on computer tapes. The tapes will be flown to Baltimore, where researchers at the Johns Hopkins School of Public Health will extract lessons for lands decimated by disease.

And the unnamed baby from Khandsari will take her small place in the history of public health. It is a discipline that has transformed human life in wealthy countries over the past century by greatly reducing the risk of early death.

Despite the devastating setbacks of AIDS, war and natural change is coming to the Third World.

The achievements of public health are rarely recognized and little understood, partly because of the mesmerizing power of modern medicine. With its dazzling trauma centers and daring surgeons, medicine is defined by the drama of snatching a life back from the precipice of death.

Public health could not be more different. Instead of scrambling to heal the sick, its practitioners plot ways to prevent illness. Rather than embrace the latest technology, they seek remedies so simple and inexpensive as to be practical in even the most destitute places.

Yet the low-tech solutions of public health save lives on a scale incomparably greater than cutting-edge medicine. The most skilled doctor can fight illness only one patient at a time; public-health measures protect whole populations. The $250,000 that a heart transplant in Baltimore would cost could buy enough of the mundane arsenal of prevention -- vaccinations, mosquito nets, latrines -- to save thousands of children in the Third World.

Here in Sarlahi District, a patch of cleared jungle crisscrossed by rivers that drain the Himalayas, Hopkins researchers and their Nepalese collaborators have conducted a series of nutrition experiments that are changing the calculus of death in the developing world.

Paid for by U.S. taxpayers, the experiments are directed from the East Baltimore campus of the nation's oldest and largest school of public health. They are built around that most ordinary accouterment of American childhood: the vitamin pill.

Though Westerners may think of Nepal as an exotic land of mountain treks and Everest expeditions, it is one of the world's poorest countries. Most of Sarlahi's half-million people are subsistence farmers like the Pasmans, inhabiting a world of creaking oxcarts and smoky cooking fires that has barely been touched by the past century. For scientists who study illness and death and how to prevent them, it is a human laboratory of unparalleled opportunity and a spectacle of inexpressible suffering.

Rampati Devi Pasman lies in the shade outside her home with a brown blanket wrapped around her yellow sari -- a crumpled figure with only her despairing eyes visible. A goat is tied at the gate. A twig broom leans beside a stone stained red with ground spices. Slices of yellow squash, spread to dry in the sun, are rotting after the previous day's rain.

The grieving mother holds her head between her palms, answering monosyllabically in her native language, Maithili, as the project worker completes the Infant Verbal Autopsy form. Since the death of her daughter, she has been racked not only by grief but by incapacitating headaches. When she struggles to sit up, her head teeters as if she might lose consciousness. Sometimes she moans and is unable to answer.

After a while, summoned by a child from the fields, her husband arrives, his head shaved in mourning. Bhikhari Pasman settles cross-legged beside his wife and tries earnestly to answer questions. Like most illiterate villagers, he does not know exactly how old he is; he thinks that he may be about 45 and that his wife is several years younger.

Their firstborn, a son, died after five days, he says. A daughter died at about age 5. They have three surviving children: a girl about 15 and a boy about 6, who both look on curiously; and another son, about 10, who has taken the family's water buffalo to pasture.

Both mother and father insist that their baby was perfectly healthy until the morning of her death. But the questioner teases out the fact that three days before, the infant broke out in a rash of blisters ("the size of a lentil") that covered her head and neck.

To a Western pediatrician, the rash might indicate a severe staphylococcus infection spreading through the child's bloodstream. Such an infection could produce a seizure, which might explain the foam around the baby's mouth.

But in the parents' traditional conception of illness -- a taxonomy more spiritual than physical -- a rash is not a sign of disease. In any case, they are certain they know what killed their daughter. The mother had left the hut that night to relieve herself in the field nearby; minutes after she returned, the infant uttered her strangled cry. Evidently, the father explains, a ghost lurking in the field latched onto his unsuspecting wife, who carried it into the hut, where it leapt upon the helpless child.

Bhikhari Pasman begins to weep. In the distance, beyond the neighbors' mud-brown huts, past golden fields of rice and spiked green fields of sugar cane, the Himalayas shimmer.

"My daughter died! Look at my wife!" he cries out. "I have great sorrow, and the landlord said I have to work in the fields.

"How can I do that?" he asks. "How can I do that?"

Vanquishing killers

In the 19th century, the infections that today ravage Third World villages were familiar visitors to American homes. Of Abraham Lincoln's four sons, only one lived to adulthood; the others died at 3, of tuberculosis; at 11, of typhoid fever; and at 18, probably of complications of pneumonia. Their fate was a tragic but not uncommon pattern at the time, as it is now in Nepal.

Each year of the 1800s, Baltimor-eans were felled in the thousands by such contagions as cholera, yellow fever and smallpox. In 1900, the health department's annual report began with an emotional plea for a sewer system, noting that 90,000 "earth closets" dumped human waste into the city's back yards. Baltimore's infant mortality rate that year was more than twice as high as Nepal's today; the toll for all ages included 1,303 deaths from pneumonia, 1,056 from tuberculosis and 848 from "infantile diarrhea and cholera."

Today, clues to the vanquishing of such killers in the United States are everywhere -- and everywhere taken for granted. There's the slight taste of chlorine in the water that reliably runs from the kitchen faucet. There's the howl erupting from a pediatrician's office after a routine vaccination. And, perhaps least appreciated, there is the grid of vitamins and minerals on the side of the cereal box.

These are the quiet victories of public health. No matter how impoverished or negligent an American parent, his child is almost certain not to catch diphtheria from a classmate, contract dysentery from tap water, or become crippled or blind because of vitamin deficiencies.

In the Third World, few parents are so fortunate. Of the 11 million children younger than 5 who died worldwide last year, 99 percent lived in developing countries, according to UNICEF. In Nepal alone, 78,000 children died -- more than in all the industrialized countries combined.

Today, the odds that a Nepalese child will die before age 5 are roughly one in 10, about average for the Third World. But as grim as that statistic is, child mortality in Nepal has come down steadily over the past 40 years, as in nearly every other country.

Probably the most important reason is the steel pumps that provide clean water in many villages in Nepal. In addition, vaccinations protect most Nepalese children against diphtheria, polio and measles. Oral rehydration therapy -- inexpensive ready-mix packets -- prevents many deaths from diarrhea.

And there is one other factor: Nepal's national vitamin A program.

The vitamin A doses, costing pennies, are merely a few drops of liquid poured into a child's mouth every six months. To a layman, the dose seems about as likely to save a life as the drops of the shaman's mustard oil were to save the Pasmans' baby.

But that may be why even scientists who study vitamin A sometimes find themselves declaring: It's magic. They estimate that vitamin A, by boosting children's defenses against fatal infections, is saving more than 20,000 lives every year.

The program grew directly out of the first phase of Hopkins' Nepal Nutrition Intervention Project. Completed in 1991, that study found that vitamin A reduced child mortality by 30 percent.

But the Hopkins scientists found the vitamin's protection did not extend to infants younger than 6 months -- those most at risk.

So they tried a different approach, giving vitamin A supplements to pregnant women in the hope that it would help their babies. The infants' death rate was unaffected. But the experiment produced a classic piece of scientific serendipity: The mothers' death rate was cut by 40 percent.

Now, the Hopkins team is taking another run at saving the youngest babies. In this third phase of the project, it is combining vitamin A with other vitamins and minerals, and giving them to pregnant women.

The vitamin pills that Rampati Pasman took did not save her baby. But as in all public health research, this study draws no conclusions from a single case. That will take thousands of such stories -- some as tragic as hers, some as joyful as a baby's first smile -- all reduced to codes and numbers, proportions and probabilities.

Weighing babies

Punya Prasad Dhal parks his motorcycle in front of the hut where Amirkha Devi Mahara rests with her 10-hour-old son. He unstraps an electronic baby scale -- and finds his way inside blocked.

A rough curtain of burlap covers the hut's opening. Before it stands a 5-foot stick topped by a dirty shoe, a clutch of dried red chilies and sprigs of herbs. A dung fire smolders. The display is intended to scare off the invisible menaces that villagers believe steal so many young lives.

Dhal, project coordinator for this village, opens negotiations with the new mother's formidable sasu, her mother-in-law.

Remember, Dhal asks, when we first visited seven months ago? Remember how we said we were trying to find out which vitamin pills produce the healthiest babies? Now, he says, to see the effect of the pills Amirkha has been taking each day, we need to weigh and measure the baby.

The mother-in-law is torn. By tradition, for six days after giving birth, a new mother is considered jutho, or polluted, and should not have visitors. But this nice young man in the button-down shirt with his mumbo jumbo about centimeters and kilograms seems so authoritative -- an envoy from some other world, unimaginably rich in knowledge and equipment.

She gives her consent, and Dhal hunches down on the hard-packed earth to unload his gear.

It is a scene to be repeated more than 4,000 times between July 1999 and October 2000, as Dhal and other project workers rush to reach babies within 24 hours of birth. It is a daunting task: Newborns scattered in hamlets across the hills and plains must be examined at the rate of nearly 10 a day.

Precise weighings are critical. The Hopkins team, led by nutritionist Parul Christian, is testing which combinations of prenatal vitamins increase birth weight and reduce infant mortality. About half of babies born in Sarlahi weigh less than 5Ý pounds, the medical definition of low birth weight. Their sickly start, a consequence of poor maternal nutrition, is often a sentence to early death.

Dhal is among the army of workers who keep the project's colossal machinery going.

At its heart are 426 sari-clad ward distributors -- called WDs in both English and Nepali. They are village women, recruited from the slender ranks of the literate, who monitor women of childbearing age.

When one misses a menstrual period -- a fact the women often reconstruct by recalling phases of the moon -- the WD summons a project technician to do a pregnancy test. If it is positive, the woman is enrolled in the project. Her WD, generally a neighbor, gives her a jar of vitamin pills and visits every few days to make sure she is taking them.

All told, about 5,000 pregnant women in the villages of Sarlahi will be assigned randomly to one of five groups: vitamin A alone; vitamin A and folate; vitamin A, iron and folate; vitamin A, zinc, iron and folate; and a jampacked multiple vitamin containing all those nutrients plus vitamins B, C, D, E and K as well as copper, calcium and magnesium.

The lozenge-shaped pills are rust-colored, because red is considered auspicious in Nepalese culture. To prevent bias, all 1.5 million pills are identical in appearance; a single digit of 1 through 5 on the jars allows researchers to track their distribution.

The Canadian manufacturer retains a secret chart revealing which number stands for which ingredients, with a copy in a sealed envelope locked in an office at Hopkins.

By spring, all the babies will have been checked at birth and followed for at least six months. Then, in a sort of public health version of the Academy Awards, researchers will tear open the envelope and identify the contents of the look-alike pills.

Next they will crank out the numbers and learn which micronutrients produce the healthiest babies. Ultimately, the project could help design a cheap prenatal vitamin pill, a silver bullet against the scourge of infant mortality in developing countries.

Why bother with the research? Why not just give every pregnant woman a multivitamin? That is common practice in the United States -- despite evidence that the vitamins have little benefit, probably because most American women are well-nourished.

But in the Third World, budgets are so strapped that every expenditure is a stark choice.

"How do we know that maternal vitamin pills are better than, say, giving out bars of soap so people can wash their hands and reduce disease transmission?" asks Christian, the Hopkins nutritionist in charge of the project. "Or buying slippers to keep people from getting hookworm? Until this work is done, we really won't know what impact these nutrients may have."

At the birth assessment, Dhal questions the shy mother, writing her answers on his forms. With a beeping electronic timer, he counts the infant's breath rate. He holds a thermometer under the boy's arm. With a plastic tape, he measures the head and waist. Stretching the tiny body atop a birchwood board, he records its length.

Then, the culminating moment. With the mother's help, Dhal lifts the whimpering newborn gently onto the gleaming white scale.

There is a moment of breath-holding reverence. Geese cackle in the distance; neighbors crane their necks for a peek past the burlap. The digital numerals [See Nepal, 14a] jump, then settle at a healthy 2.974 kilograms -- 6Ý pounds. Everyone relaxes.

As the family cow chomps grass out front, Dhal awards the mother a project birth certificate on heavy blue paper. It has no official status, but it is the only one she'll get.

A rough ride

For a few golden weeks, the scales work just like that. But strapped to motorcycles and bounced for miles along rough dirt paths, they begin to malfunction. After four months, the breakdowns are threatening the project.

One autumn evening in Sarlahi, Parul Christian holds a screwdriver and stares in dejection at the baby scale dismantled in front of her.

"Never again a birth-weight study!" she declares, her voice echoing in the spartan "guesthouse" of whitewashed concrete where the project's senior staffers stay.

Five months earlier, the supplier of the German-built Seca Model 727 baby scale, with instructions in 12 languages, demonstrated its capabilities in a Hopkins classroom.

Pounds or kilograms at the touch of a button. Accurate to 2 grams. Performs 20 separate weighings in seconds, as a baby squirms, then averages the readings. With batteries that recharge overnight and a custom-built plastic case to protect from dust and rain.

But now the scales -- each costing $1,300, more than the annual income of most families in whose homes they are deployed -- are proving catastrophically unreliable.

Designed for a Western doctor's office, the scales cannot take the punishing rides. The flimsy battery wires snap. The cases come apart at the hinges.

Worst of all, the scales are becoming inaccurate. At the moment, five of the 11 scales are unusable. A baby is born in the project area every three hours, and without reliable scales, timely weighings are impossible.

As a student and now Hopkins faculty member, Christian has been consumed for seven years by the Nepal vitamin research. Now, at 36, she is principal investigator on the project's latest phase. It is her career that is on the line.

Christian grew up in Baroda, India, a university city of 2 million; her father was a manager at a concrete mixer company, her mother a teacher. She learned firsthand about Third World diseases, contracting malaria every year as a child. Her community took school seriously: A close friend killed herself by self-immolation after failing 10th-grade exams.

Christian intended to follow an aunt into medicine. But when riots delayed her examination results and the medical college required her to defer for a year, she started a degree in nutrition instead.

That led to a job on a U.S.-funded nutrition project in India. Then, a dozen years ago, her parents immigrated to Delaware, seeking a better life for Parul and her younger brother.

"It's so easy to have a fairly decent lifestyle in the U.S.," she says. "That's very hard in India unless you're very rich. My parents never had a car there -- my father had a scooter. And they never had a phone until the very end."

Christian learned to drive and soon found work in Philadelphia running three government nutrition clinics for poor women and children, discovering an underside to the prosperous United States. But the suffering she had seen in the slums of Baroda and the villages of rural India stayed with her.

"I wanted to make a difference, to have an impact on children's and women's health in that part of the world," she says.

In 1996, she completed a doctorate at Hopkins, writing a dissertation on night blindness suffered by vitamin A-deficient women in Nepal. She had spent three months in 1993 living in a tiny village in Sarlahi without electricity. She recalls how her attempts to use her laptop computer at night were foiled when its glowing screen attracted hundreds of insects, and how her first bucket-shower drew dozens of curious villagers.

Now, commuting every few months between Baltimore and Nepal, alternating Western and traditional Nepalese garb, she feels as comfortable in the austere guesthouse with its cold water and squat toilet as in her cozy apartment off 39th Street. She has become a patient instructor in fluent Nepali to the project's staffers; her quiet authority is accepted even in male-dominated South Asian culture.

But tonight, the failing scales have her rattled. A few Nepalese staffers have confided that they know what's wrong: During the recent Hindu holiday of Dashain, the scales were not anointed with the blood of a sacrificed chicken or goat -- standard practice for trucks, buses and all kinds of machinery.

"Maybe they're right," she says, with a rueful smile.

Frustrated, she works into the night. She tests a scale with an iron 100-gram weight; the red electronic readout says 82 grams. She unscrews the bottom plate, makes some adjustments and tries again with a 2-kilogram weight. The display shows 1.782 kilograms.

"Why? Why?" she exclaims. "What's going on?"

Christian could suspend the fieldwork. She could junk the electronic machines and buy old-fashioned balance scales. But they would be accurate only to the nearest 100 grams, and that's not good enough.

The study is designed not merely to advance knowledge but to have real impact. Only if its methods are rigorous, its implementation flawless, will its results convince other scientists. Only a scientific consensus will persuade Third World governments and aid agencies to launch new programs.

None of that can happen unless the scales work. Christian says she'd like to call Baltimore to consult

Keith West, founder of the Nepal nutrition studies -- but the project's phone line has been down for weeks.

"I can't even make a bloody phone call from Sarlahi!" Christian declares, before stomping off to her room for what will prove a sleepless night.

Codes and data

The project's guesthouse is occupied by, in descending order of population, gecko lizards, rats and public health researchers. All three denizens work long hours in pursuit of their respective goals: bugs, food scraps -- and data.

Data drive and justify the whole costly and complicated enterprise, from the piles of paperwork necessary to secure funding from the U.S. Agency for International Development; to the heavy computing power and elaborate lab machinery at the Hopkins School of Public Health; to the constant flights between Baltimore and Kathmandu; even to the project's six shiny-white Toyota Land Cruisers, which fly past Sarlahi's overloaded buses and plodding water buffalo like chariots of the gods.

In some ways, the project functions as a substitute government. It has produced the region's only detailed maps, which have been borrowed to plot election districts and settle land disputes, and it maintains the only accurate records of births and deaths.

While the noble end of the vitamin experiments may be to improve the lives of mothers and children, the particular mothers and babies under study are only a means to this end. Again and again, their lives are reduced to numbers.

The numbers are recorded on 37 forms, spanning conception to death, from the Pregnancy Surveillance Form to the Infant Verbal Autopsy. The guidelines for all 37 are recorded in the project's 131-page Manual of Operations, or MOO, over which Christian labored for months.

For babies, the forms have boxes for birth weight in grams and respirations per minute, and whether the infant cried, or did not cry, at birth. For women, there is hemoglobin count and upper-arm circumference and codes that indicate trouble: the annoying 6, for "refused vitamin pill"; the inconvenient 7, to record that a woman has moved away; and the tragic 8, to show that a woman has died.

To conduct so meticulous a study of 5,000 American women would be a daunting enough challenge. Here, 97 percent of women give birth in their simple homes, some a two-hour walk from the nearest road. Paths between villages can be impassable during the summer monsoon. Electricity is spotty even along main roads, and none of the project's 30 far-flung village offices has a phone. The two dozen motorcycles used by the male staffers -- women do not ride motorcycles in rural Nepalese culture -- must be kept running despite parts shortages and adulterated gasoline.

That the project stays on track is due to the dedication of the Nepalese staff. On this American-designed, American-financed project, they perform nearly all the work.

Stories abound of workers who jury-rigged broken bicycles, braved floodwaters or rushed out in the middle of the night to meet the 24-hour deadline for weighing newborns.

Whenever staffers decide they have seen it all, a new snag arises. Wages are held up one payday because a bank manager -- once refused a ride in one of the Land Cruisers -- declares a required signature invalid. The same day, supervisors desperate for liquid nitrogen to freeze blood samples discover three suppliers are shut down; a worker must drive all day to bargain with the only one still operating.

Of the hundreds of employees, a few have not worked out. One WD, whose odd behavior had co-workers suggesting she might be a witch, was fired for fabricating data; all her reports had to be discarded. A male worker, fired for harassing a woman, printed fliers that accused the American researchers of poisoning Nepalese children.

Staffers quickly defused that flap. But they routinely run into misunderstandings along the uneasy border between modern science and village folklore.

One pregnant woman refuses to take the vitamin pills because she thinks, incorrectly, they contain salt, which by tradition she cannot consume during the mourning period for her father-in-law. Another swallows several pills a day, hoping they might combat her advanced tuberculosis.

Staffers regularly are confronted by worried neighbors of a child or woman who took a vitamin and died the next day. It can be difficult to convince them that the timing was coincidental.

Some women balk at giving blood samples, citing rumors that their blood will be sold in America.

Once, some villagers thought they had proof. They overheard discussion of the need to take "2 cc," or cubic centimeters, of blood from each subject -- and refused to cooperate.

In Nepali, sisi means "bottles."

A prayer

Early the morning after her struggle with the scales' innards, Parul Christian sips tea with buffalo milk and decides something must be done. She knows what it is.

"Only Rabindra knows how to fix the scales," she says.

Rabindra Kumar Shrestha, 42, is the assistant field manager, a man of unshakeable good humor and diverse talents -- who today happens to be enjoying his first day off in several weeks.

A driver is dispatched in one of the Land Cruisers for the two-hour trip to fetch Shrestha from his home. He reaches the guesthouse late in the morning, grins broadly and announces that his wife is "very angry." Then he grabs a screwdriver and attacks the first of the malfunctioning scales.

A father of three, Shrestha has a university degree in mathematics, likes to repair appliances in his off hours and relishes his reputation as a hot dog on his project-owned Honda motorcycle. But Shrestha was born under the sign of the snake, and his most impressive talent is killing cobras.

Asked how many he has dispatched, Shrestha smiles modestly. "Forty or 50, sir," he says.

"You can't hit them on the head first," he explains, transforming his hand momentarily into the flat head of a cobra to show how deftly it can dodge a blow. "You hit them in the spine first. Then you hit them in the head."

With an ax?

"With a stick, sir," he replies.

If a stick isn't at hand, other weapons will suffice. He has finished off four cobras to date inside the main project office in Sarlahi, he says. One he killed with a flip-flop.

After a half-hour of tinkering, Shrestha shows Christian how a crucial metal plate inside the scale has warped from rough handling. Then he demonstrates how to adjust certain screws to compensate for the warpage. The instructions in 12 languages say nothing about these screws; Shrestha simply figured it out.

He puts the scale back together and, with a flourish, places a 2-kilogram weight on top. The display glows: 1.992. His colleagues cheer.

The next day, with all but one scale repaired, Christian must begin the 30-hour trip to Baltimore, where she has classes to teach and papers to write.

As she parts with her colleagues, she thinks of the crumbling stone temple in the village of Murtiya, where several staffers are headed. Christian raises both hands with fingers crossed.

"Pray for me in Murtiya," she tells them. "Pray for the scales."