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Lives Lost

MALAWI


CHECKING UP: A student doctor at Lilongwe Central Hospital in Malawi eamines Nalinkina Majomeka, 22, who suffers from bacterial meningitis.

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'I'm one of six children. I'm the only one left.'

By John Donnelly, Globe Staff
Photos by Dominic Chavez, Globe Staff

LILONGWE, Malawi -- Sounds echo through the concrete corridors of Lilongwe Central Hospital. Infants cry for their mothers, patients moan, nurses push squeaky carts. No sound is muffled.

   


MALAWI: AT A GLANCE

Malawi was the worst-hit country for cholera during the first 9 months of last year. There were 33,966 cases, including 950 deaths.

Safe water 57%
Population with access

Health care spending $7
Per capita, 2000

Physicians
Not available
Per 100,000 population, 1998

Source: World Health Organization; USAID
Graphic: Globe Staff


This section launches a yearlong effort by the Globe that will feature stories on world health challenges and the solutions that are within reach.

INTERACTIVE OVERVIEW
This special guide tells the story of people who should have lived, but didn't, in the words and pictures of the reporters and photographers who documented the daily struggle of so many to stay well -- and stay alive. See overview

CHALLENGES AND CURES

Most deaths from AIDS, malaria, tuberculosis, and childhood diseases can be prevented or cured with simple and affordable measures, but only 25 percent of those at risk are getting that help.
Lives Lost maps: Challenges and cures

STORIES

Introduction   Story
None of them had to die

CAMBODIA   Story
'The real killers are poverty, ignorance, fear, and corruption. Disease just administers the coup de grace.'

MALAWI   Story
'I'm one of six children. I'm the only one left.'

RUSSIA   Story
'TB is not a medical problem. It is one of economics and organization.'

GUATEMALA   Story
'He could die. One infection, and he could die.'

ZAMBIA   Story
'You can't give up on these patients. There are simple things you can do for them.'

HOW YOU CAN HELP
Details on global health concerns and projects and a list of charitable and non-profit organizations that are working on world health. See resources

REACTION

Chat transcript: On Monday, January 27, Globe reporter John Donnelly chatted with Boston.com users about the Lives Lost series and issues in world health. Read transcript

Message board: Boston.com users share their reactions to this report.   Responses

CONTACT US
E-mail the Globe reporters and photographers who worked on this report.

Cambodia
Reporter: Colin Nickerson
Photographer: Michele McDonald

Malawi and Zambia
Reporter: John Donnelly
Photographer: Dominic Chavez

Russia
Reporter: David Filipov
Photographer: Evan Richman

Guatemala
Reporter: Raja Mishra
Photographer: Essdras Suarez

Until a scream silences everyone.

It is a woman's scream, followed by another, and another. The sound seems to come from everywhere at once, and from nowhere.

The woman pauses for a moment, and the buzz of the hospital fills the space. Then she finds her voice again. Her words are suddenly clear and close.

"Who is going to care for my children?"

"Who?"

"He didn't know he was going to die! He died on his way for X-rays!"

The small 20-year-old woman writhes and trembles on the second floor. She makes whooping sounds, she whimpers, she groans, and then goes quiet. Women sit around her, watching warily, afraid that she might flail her limbs at them.

Fifteen feet away, behind a door, three white-robed hospital attendants wearing disposable gloves carefully wrap a red-and-gray-checked wool blanket around the body of her husband, Edson James, 42. He was a farmer. A storm of diseases took him: AIDS had demolished his body's defenses, turning ordinary germs into killers.

The attendants wrap rope around the blanket and knot it tight. They wheel the corpse into the hall on a gurney, the same one that served as the farmer's deathbed. As they wait for the elevator, they stare at the woman, who is face-down on the floor, now as still as her late husband.

Five minutes have passed since her first scream. Everyone in the hallway looks at the bundle of death with new appreciation. From one corner, a nursing mother takes in the scene through hooded, dulled eyes.

"Every two hours we expect someone to die here," says Priscilla Gunn, whose husband is a patient in another room. "Every hour we expect to hear cries."

She looks away. It is Oct. 23, the first of our seven days at Lilongwe Central, ordinary days, languid days, days of endless, needless death.

The next morning, at 8 a.m., doctors, medical students, and the adult ward's head nurse walk into a small room on the hospital's third floor. It is time for their daily review of cases and deaths over the past 24 hours. Gift Mwalwanda Gumboh, the head nurse, appears calm. But she is very angry.

"We had a fatal case yesterday of a man who was married to a very young girl," she tells her colleagues. "He came in a long time ago, and if we had 10 nurses on his ward, we would have noticed that he was failing. Instead we have one nurse for 78 patients! We decided to send him off for X-rays, and he died. The X-rays should have been done two weeks ago. The person was neglected. We need more personnel."

The others nod.

It is a familiar story, another person passing away needlessly and almost unremarked. No one here takes the blame. Blame, they feel, should go to the system. The government doesn't pay them enough -- $260 a month for doctors, $175 a month for nurses -- about a quarter what they could earn in private practice.

Staff leave. Patients multiply. Patients die.

"I am in the process of leaving myself -- to Great Britain," the head nurse declares, sparking laughter from everyone in the room. "That's right, I am. You cannot survive on this salary. You train Malawians to save Malawians. For what? The government cannot stop the exodus."

Malawi, home to 10.7 million people, is a narrow squiggle of land in southern Africa sandwiched among Tanzania, Zambia, and Mozambique. Since the country won independence from Britain in 1964, its government has often focused on health initiatives. In the 1980s it extended basic immunization coverage to more than 80 percent of children. The World Health Organization gave Malawi, one of the poorest nations in the world, a citation for eliminating measles in 1992, a tribute to its vaccine program.

But AIDS and famine and poverty have eroded those gains, overwhelming a health care system that is severely underfunded. Malawi spends only $7 per person and is entirely dependent on foreign donations for even that amount.

Officials acknowledge that sum is far too little to even begin reversing Malawi's astounding 23 percent death rate for children under age 5, much less to contend with the onslaught of AIDS. Here, as in other lands, AIDS strikes disproportionately at those in the prime of life -- between the ages of 15 and 49 -- taking not just lives but the productive heart of the economy and leaving legions of orphans.

About 16 percent of Malawi's adult population, or 1 million people, is infected with HIV -- an incredibly high percentage but still low for the region. The nation ranks No. 8 in percentage terms in southern Africa.

"Every single family in Malawi deals with AIDS on a daily basis," said Anne Conroy, a senior adviser to Malawi's vice president, Justin Malewezi.

The government, facing a prolonged famine and having few resources, has no plan to boost pay for doctors and nurses. It sought more money for salaries as part of a seven-year $1.6 billion proposal it made in 2001 to the Global Fund to Fight AIDS, Tuberculosis, and Malaria. But donors urged Malawi officials to scale back the request. The country eventually secured $200 million for a plan stripped of salary raises and other initiatives that would have helped restore Malawi's health system.

The 750-bed Lilongwe hospital, which is on a hill near the center of the capital, was once the crown jewel of health care in Malawi. It is one of three central hospitals that for years have attracted the nation's top generalists and specialists.

But Lilongwe Central is no jewel now. Its level of care has fallen so precipitously that one senior Malawi government official describes the adult wards as "no longer a medical ward but a morgue."

In those wards, the government estimates, 70 percent of the patients are HIV-infected. Hospital workers say it is closer to 90 percent. "It's HIV unless proven otherwise," says hospital director Dr. Charles Mwansambo. Health workers themselves are not immune. It is widely accepted here that at least 25 percent of them are infected.

The morning meeting ends, and workers leave to check on patients. On the second floor alone are 98 patients waiting for one of three doctors or a half-dozen nurses. Fifteen medical students trail them.

We follow along, with our translator. She is Lisa Madsen, 24, who returned to Malawi earlier this year, leaving behind a life of possibility in London. She came back to care for her sister, who eventually died of AIDS, leaving behind three children.

"I care for my nephew and nieces now," she says. "I'm one of six children, and I'm the only one left now. They all died of AIDS."

In silence, we walk into Ward 2B, the men's ward, where a boy rests in one bed. Nenani Lungu is 16, but he looks no more than 9. There's something bulging behind his left eye. It hurts, he says, but he doesn't want to talk about that. He wants to talk about America.

"I want to see America," he says, his brittle fingers curved around my arm. "Don't trick me -- can I see America? I hear that America is a good country."

Isn't Malawi good?

"No, no," he says. "It's too poor to be good."

On Ward 2A, the women's ward, Wilson Casis, 45, takes care of his wife, Cecilia, 30, and their baby, Angelina, who is 5 months old and weighs just 5 pounds.

They are staying on the veranda, a fancy name for an open-air corridor where people are sent when no beds are available in the rooms. Next to them is a moaning 19-year-old woman lying on the floor; she has had bouts of severe vomiting and diarrhea. No doctor has seen her or Cecilia for two days.

Cecilia is too weak to talk. Wilson worries about his wife and baby. "Cecilia was sick shortly after having the baby," he says. "She tried breast-feeding but had to give it up. It made her too weak. A nurse told us to use baby formula, but it was too expensive."

The baby formula costs about $4 a week.

In a room down the hallway, meanwhile, two men carry in a new patient: Rebecca Makwenda, 26. It is 1:25 p.m. Rebecca is wheezing, lethargic, feverish, coughing. A doctor prescribes antibiotics and intravenous fluids. He leaves, and nurses insert the IV line into her withered right arm.

At 2:15 p.m., a nurse checks on her. Rebecca is dead.

No one has an answer

At the next morning's meeting, a student doctor reads from Rebecca's chart: "She had a headache for three weeks, diarrhea for three weeks. She developed a cough, had a fever, seemed chronically ill, had neck stiffness, possibly indicating meningitis. She likely had pneumonia. Diagnosis was sepsis, pneumonia, pulmonary TB, malaria."

It was not possible to say what killed her. AIDS weakened her immune system, and as many as five powerful diseases swept through her.

One doctor asks why she didn't come in earlier. No one has an answer. It is a question they ask almost every day.

When Kingsley Magomero leaves the meeting, he doesn't focus on the death. The doctor has many patients to see, and little time.

He is only 26, tall, bearded, strongly built. The other workers at the hospital see him as an authority figure, and with quiet grace he accepts the responsibility. Only three in his graduating class of 18 still work in the public hospitals, but he is not ready to leave.

"The missionary hospitals are the biggest poachers," he says, walking down the hall. "They pay more, about double our salaries. It's frustrating. It doesn't look like health is a priority in this country. It looks like the priority is to buy Mercedes Benz and luxury cars for the Cabinet ministers."

He stays at this hospital because he believes he has more to learn. Germany pays for one experienced doctor to teach the staff and oversee the medical ward. But AIDS is his teacher, too. Those who stay several years become experts in the ways of the killer.

In rich countries, doctors keep AIDS at bay with a combination of life-extending antiretroviral drugs. In Malawi, a program is just beginning to give those drugs to patients, but so far those being treated number only in the hundreds. The treatment costs about $1 a day per patient -- too expensive for most of them.

That means the doctors must find other ways to keep the patients alive. They know how to lower levels of IV fluid for those with pneumonia; regular-size doses can kill them. The greenest student-doctor knows how to give a spinal tap for bacterial meningitis, frequently associated with AIDS. It is a procedure so rare in the West that specialists must often be called.

One of Magomero's patients this morning, Robert Sosola, is failing. His eyes are closed, his breathing shallow and irregular. Sosola has AIDS, Magomero says, but bacterial meningitis may kill him. "Four days ago, he seemed to be improving, and all of a sudden he's deteriorating," the doctor says.

Because the hospital is out of the preferred antibiotic treatment, cephalosporin, Magomero prescribes gentamicin, a drug he knows will be less effective. "Even when you do make a diagnosis, you don't have the drugs to treat it," he says.

   


CRITICAL CARE: Jeany Jumbe, 35, suffers from bacterial meningitis at Lilongwe Central Hospital in Malawi.

Next door is the 16-year-old with his hopes set on America, Nenani. On his bed sits Ellen McCurley of Boston, who has started the Pendulum Project, a charitable organization that funds grassroots AIDS initiatives in three sub-Saharan Africa countries, including Malawi. She met Nenani this morning and she tells the doctor that she is worried about him. She is thinking about taking him to a private doctor.

Magomero looks closely at Nenani's eye. "He might have a tumor there. I'll get him an eye specialist."

McCurley thanks him and promises to check back. Earlier in the day, she had arranged for two people she works with to take Wilson and Cecilia's baby, Angelina, out of the hospital for private care. The parents readily agreed. This is how McCurley often works during her semiannual visits to Malawi, helping those she happens to meet while looking for other programs that serve the poor.

Now she heads for the morgue to see her friend, Daniel Chikuse, the mortician. During her previous visits, McCurley spent many hours with Chikuse. She wanted to learn more about why people were dying. The mortician likes an audience.

In the few quiet moments at the morgue the portly Chikuse likes to sit out in the sun, tell stories, and hint widely that someone should bring him a bottle of wine. When it is busy, as it is now, his face turns grim. Life seems to seep out of him, and his jaundiced eyes cloud over.

Relatives of one of the dead walk into his tiny office. He opens the registry, an oversize book in which he has recorded five deaths yesterday, five the day before, 16 the day before that, uncounted thousands in his four years here.

"Death, death, death," he says wearily, writing in the book. "Every day, death."

The mortician is signing out the body of Rebecca Makwenda.

Her husband, Henry Chirwa, a tall, thin, handsome man, a manager of a tobacco farm, waits patiently. He now has two children to raise by himself. A third child, Rose, died of pneumonia in June. She was 1 month old.

With the help of relatives, Chirwa loads the casket carrying his wife into a pickup truck for the six-hour journey north, to her village of Tukombo.

"My future," he says, "is bleak."

A family tragedy

A narrow dirt road bordered by fruit trees and cornfields leads to Tukombo, which is divided into five sections -- one per clan. The Makwenda clan rules over land that sits high above Lake Malawi, a body of water so broad that even on a clear day villagers cannot see across to neighboring Mozambique.

Overnight here, the wind has loosened scores of weaver-bird nests from the branches of tall bamboo stalks and wide mango trees and scattered them underfoot, as if nature was offering its own condolences to the passing of Rebecca Makwenda.

It was here that she and Henry Chirwa began their courtship, meeting as students. Years later, again at this site, they married. He was a college graduate with a degree in agriculture. Their future seemed as bright as the stars at night. Henry earned $90 a month, good pay for Malawi. They wanted children, and Rebecca gave birth to Christian, now 7, and then Catherine, 2. Her health seemed fine until Rose's birth last summer.

Suddenly, as the infant was failing, Rebecca's health began to deteriorate. She lost her eyesight. A doctor said she might have conjunctivitis, an inflammation of the membrane that covers part of the eye. She lost her appetite. A niece came to help her with the children, but Rebecca sank into a depression and often refused help. She walked into walls and broke down crying or ran out, only to fall a few steps out the door.

In the last three weeks of her life, she went with Henry several times to a health clinic. Workers prescribed several medicines for malaria, but she became weaker and weaker.

She was the third Makwenda sibling to die during the last year, possibly all from AIDS. Another had died two years earlier. The victims don't know how they were infected, although it was almost certainly through sexual contact. Although free AIDS testing is becoming widely available, the disease remains a largely unacknowledged killer because of the stigma it carries here and in other countries.

Only three children are left in the Makwenda family, but surviving relatives still refuse to admit that the others died of AIDS. "We feel pity with this new generation," says the father, Walter. "The older people are not dying in this way. Maybe it is the plan of God."

It is 10:30 a.m., and a group of church women wearing white shirt-coats, white head scarves, and black skirts sing as they enter the Makwenda house. The four rooms are already warm from the heat of the living. Women sit shoulder to shoulder against the walls and around the closed casket.

Some are weeping, but the church women pay no mind. They sing and sway to the music, marching one by one into the tiny living room.

"Maybe tomorrow I'll also be a funeral," they sing, over and over, as men come and lift the casket. "Should take my Bible with me, in case I'm a funeral."

In the center of the village, under low-hanging mangoes, the church women stand erect in a circle around the casket, holding fistfuls of yellow flowers with their heads down. They also hold green bouquets woven into the shape of a cross. Church elders lift the casket onto their shoulders and trudge nearly a half-mile in the oppressive heat, until they reach the village cemetery.

Henry bends over the grave. "Rebecca, so dear to me," he whispers. "The family loved you. We are parting forever. We will never meet again. May your soul rest in peace."

The funeral is done. He must move on.

One of Rebecca's brothers, Ephraim, is anxious to call a family meeting about Henry's and Rebecca's children. Ephraim, who lost his firstborn earlier the year, wants to take care of Catherine, the youngest. "Let's put our mind to the children, what's best for the children," he tells Henry on the long walk back.

Henry just stares ahead, saying nothing. When he arrives at the village, he walks away from his relatives and friends to a shady spot in a field. He says softly, so no one else will hear, "I want to keep my children. They're used to me. They're used to my voice."

He looks off in the distance. There's another issue. "The worst that can happen. . . ." He chokes up, then tries again. "The worst that can happen is maybe I'm infected, too, that I may go. I'm very worried."

He must decide: Should he get tested for HIV?

"I think of my kids' education, they are very young. I think I must know about myself," Henry says, his eyes fuzzy and bloodshot. "I think that's right."

He turns and walks away.

Death never leaves

On Sunday, church comes to Lilongwe Central. Choirs enter the hospital all morning long, walk into rooms, surround beds, and burst out singing, their melodies echoing throughout the building. For many patients and workers, these are blessed moments. Some mouth the words. Some press their eyes closed, the better to take in the sounds.

Life, for once, seems to fill these rooms, pressing death into the dark corners.

Death never leaves, though.

Baby Angelina, the child of Wilson and Cecilia Casis, dies at 4:30 a.m. in the home of a caregiver who stayed up all night trying to nurse her back to health. They tell the baby's father, Wilson, at dawn.

"I understand," he says. "Don't worry. It happens." He asks only that no one say anything to his wife. He wants to wait a week. He's worried the news would kill her.

Robert Sosola, the young man with meningitis, died at 1 p.m., just after the choirs stopped singing.

And late at night, at 11:20 p.m., a nurse discovers that the young woman on the veranda -- the one with the terrible diarrhea and vomiting -- has died sometime in the hours before. No one can say exactly when.

Also on that night Ellen McCurley, the woman of charity from Boston, slips inside the room of Nenani Lungu, the tiny 16-year-old who wants to see America. Something about him has captivated her. Another bulge has appeared, this time behind his right eye. Both eyes are nearly swollen shut. No eye specialist has seen him yet.

McCurley looks him over with a feeling of worry and wonder, kisses him on the forehead, and whispers, "You sleep with the angels, OK?"

"I see angels when I close my eyes," he whispers back.

The next morning the doctors learn that four people died overnight. One of them is Joyce Pensula, 19, the woman on the veranda. The medical student presenting her case at the morning meeting says she was admitted Oct. 21 with severe pneumonia. On Oct. 22 a doctor recorded that she had a high fever. After that entry, there is nothing else.

"Basically, the patient on the corridor hadn't been seen in five, six days?" asks Dan Namarika, another administrative doctor at the hospital. "Well, who knows about this patient?"

One brave student says the patient's records were lost. He says she was originally assigned to Room 6, but there were no beds; someone put her records in Room 7, where they remained until after her death.

"In a week someone should have known that the records were missing," Namarika says. "Why didn't anyone search for her records?"

The meeting breaks up. Magomero is fed up. "What happened with that woman on the veranda will happen again. More patients will die because they are not being seen."

'This terrible thing'

On the seventh day, the morning of Oct. 29, Magomero is walking rapidly down the hall, a big smile on his face.

"Look at this, look at this," he says, waving a piece of paper.

It is a letter addressed to him from Mary Ndyani, a mother of a patient.

"I am compelled to write this letter to you in order to express my deep gratitude of my family for the tremendous effort that was taken to rescue my son from the severe asthma and critical condition he was in on the morning of Wednesday Oct. 17," she writes. "I pray to God that He may give you more wisdom to better perform your job in saving people's lives."

Magomero takes the letter. He's off. "Look at this," he says to a colleague down the hall.

Outside the hospital, Henry Chirwa is waiting. He has traveled back from the village of Tukombo, where he buried his wife. "I want to tell you something," he says. "The kids are with me at my home. The family wanted to take them, but I said no. I have to find someone to watch them during the days, but I can do that."

He has been wrestling with the question of how his wife became infected with HIV. He swears that he has had sex with only one person, his wife. When she was dying, he asked her if she had been unfaithful. She told him no. "She was so gentle," he says. "I couldn't imagine that this terrible thing would happen to us."

Henry pauses. "I'm going to get tested," he says. "I'm so afraid. But I must know for my kids, for myself. Maybe, if I'm positive, I can do something about it."

Days later McCurley takes Nenani to a private doctor, who says he may have sickle cell anemia. The boy is moved to a private hospital outside Lilongwe, where McCurley will pay for his care. Back in Boston, she received a letter in mid-December from him saying he is growing thinner and more desperate. Shortly before Christmas Day, McCurley learned that Nenani died on Nov. 24, four days after he wrote the letter.

Wilson Casis takes his failing wife, Cecilia, home, where she learns that Angelina, their baby, has died. There is still no word about Cecilia, but doctors are not hopeful.

Lisa Madsen, the translator, decides to take an HIV test. The lab tests it twice, to make sure the result is correct. Negative, both times. "I have life," she says in a phone call from Malawi.

Henry Chirwa also takes the HIV test. He is positive. He covers his face and weeps.

John Donnelly can be reached by email at donnelly@globe.com

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