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Lives Lost

GUATEMALA


A PARENT'S GRIEF: Miriam Jessenia Morales Mancias, eight months pregnant with her second child, mourns the loss of her 1-year-old son, Franklin.

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

By Raja Mishra, Globe Staff
Photos by Essdras Suarez, Globe Staff

EL CHILE, Guatemala -- A touch of fever, nothing more.

   


GUATEMALA: AT A GLANCE

The number of whooping cough cases dropped to 229 in 2001 from 1,513 in 1980, while coverage increased to 92% from 43%.

Safe water 92%
Population with access

Health care spending $79
Per capita, 2000

Physicians 93.3
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

Certainly nothing unusual for a 1-year-old boy like Franklin Veliz, thought his mother, Miriam Jessenia Morales Mancias. And despite his temperature, the boy, as usual, hugged everyone in sight, then knelt by his mother's bedside to gently kiss her bulging pregnant belly.

On Oct. 23, she took him 40 miles from her dusty village to the big city, near the big hospital, to stay with relatives, just in case.

That same day, in tiny, remote Chicajalaj, 150 miles west of El Chile, another 1-year-old boy, another fever: Henry Alexander Augustin Orozco, 15 months old and yet to walk a step, his eyes still, fixed somewhere in the distance, his skin a pallid yellow-brown.

Henry suffered from severe malnourishment and dehydration from diarrhea. But his father, Federico Augustin Vasquez Orozco, insisted that there was no time to deal with his boy's troubles. There were fields to scour for food. And so he trudged off, leaving his son lying on a soiled blanket, amid swirling flies, as his wife stared blankly into the wide blue sky that enveloped their mountain ridge homestead.

Two boys, two families, two sides of a daily health tragedy in a nation recently freed from a 36-year guerrilla war in which more than 100,000 people were assassinated or murdered or simply had disappeared. But after a 1996 peace treaty, democracy took root and the economy awakened from new foreign investment. New health care technology also arrived. By 2001, 6 in 100 children under age 5 died, down from 10 in 100 two decades earlier. And post-war Guatemala had become one of the wealthiest nations in Central America.

But despite the falling rate, it still has Central America's worst child mortality rate. In fact, only three other countries in the hemisphere -- Guyana, Bolivia, and Haiti -- lose a larger percentage of children under 5. According to the World Health Organization, the Guatemalan government spends $38 per person annually on health care. In the Americas, only Nicaragua, Ecuador, and Haiti spend less.

By contrast, the US government spends $1,992 per person and neighboring El Salvador spends $79. Low government health spending means fewer vaccines, fewer doctors, less nutritional support, and the loss of hundreds of young lives every year that could have been saved.

Guatemala's health care system, it is clear, strives to improve. The government has said it cannot afford to spend more on health care, as basic infrastructure, police, and education priorities consume most of the budget. But the nation's hospital wards and village clinics remain filled with gaunt and shriveled children succumbing to easily cured, easily prevented afflictions. The system's achievements and needs were in abundant display during one week in October, as Franklin Veliz and Henry Orozco struggled to live.

Franklin: A sudden fever

Some called him "the lieutenant." Franklin Veliz was a big little boy with a ravenous appetite. He loved to skitter about the house, chasing chickens, pigs, and relatives and banging his toy trucks together.

Franklin's unmarried parents -- Jose Veliz-Catalso, 21, and Morales, 22 -- were just getting acquainted with the emerging personality of their firstborn. The three of them lived in a concrete shack in the trash-strewn back yard of Veliz-Catalso's parents' house in El Chile, an outcropping of a few dozen houses on a dirt path about 2 miles from the highway to Guatemala City.

Veliz-Catalso was unemployed most of the time but sold carpets, kitchen supplies, whatever he could find to bring home about $100 every month.

"Sometimes I wouldn't buy food for myself so I could feed my son," he said, sporting a mullet of curly brown hair and wearing a "Scarface" T-shirt that had been discarded by an American visitor.

On the day the couple took their feverish son on the bus to Guatemala City, they gave him a baby aspirin and the fever broke. But it returned the next morning. When Veliz-Catalso attempted to play with the boy, Franklin quickly vomited. His parents took him to a nearby clinic, where Franklin was given powdered antibiotics and sent home. But within hours his fever burned hotter than ever; his face turned red; he shivered.

His parents took him into the pediatric intensive care unit at San Juan National Hospital, the largest in Guatemala, where Alby Paiz, a third-year medical resident, took over.

The parents knew only that their son had a fever. Paiz, 26, pumped the boy with more antibiotics, which lowered his temperature. Determined to find out what was wrong, she wheeled a weeping Franklin toward the X-ray room.

"Daddy, Daddy, where's Mommy?" he cried.

Morales leaned over and kissed her son. Then, Franklin was gone.

Henry: An urgent housecall

Jorge Luis Gutierrez, 33, had heard about little Henry -- that he was desperately ill and that his father refused to take him into town, 2 miles away, for treatment.

On Oct. 24 Gutierrez, a doctor who runs the Comitancillo health clinic, paid the family a visit. The clinic was built as part of a recent health care push by the Guatemalan government, but Gutierrez spends considerable time -- on a $400 monthly salary -- making house calls to indigenous Mayans in these western highlands, most of whom are either unaware or wary of doctors and clinics.

Gutierrez drove the bumpy few miles from his office to Chicajalaj, a scattering of hundreds of threadbare homes around a lush green mountain valley, with swirling, cottony clouds seemingly a hand's reach away. The people of these highlands remain steeped in ancient Mayan tradition and burdened with the country's most intense and persistent poverty.

Last year Guatemala -- battered by drought, plummeting coffee prices, and a sluggish world economy -- had a resurgence in child malnutrition, according to the US Agency for International Development, which estimates that 30,000 of the nation's children under age 5 are now acutely malnourished. About 7,000 are at risk of dying, most in impoverished regions such as this.

In 2002, USAID sent $6.6 million in emergency rations, medical supplies, and diarrhea and pneumonia medications. In 2001, the US government, the top aid donor, spent $54 million in Guatemala -- one-fifth the amount of the Guatemalan government's entire budget -- mostly on combating rural malnutrition.

Henry's home was simple: four concrete walls and a dirt courtyard. A deflated yellow ball lay on the ground, as did Henry and his two infant siblings. Well-fed pigs loitered in a nearby pen.

Gutierrez saw Henry's mother, Sylvia Elvira Orozco Feliciano, 24, walking toward the house, six-months pregnant and carrying a load of corn uphill. Her skin was deep red, her eyes narrow, her red-black hair braided down her back. They clasped hands, then touched their foreheads, a traditional Mayan greeting.

"Is the boy the same?" Gutierrez asked. "Why didn't you bring him to us?"

Orozco explained that her husband had refused to let her take time away from the homestead.

"He could die," Gutierrez responded. "One infection, and he could die."

She knew this. Two years earlier she had watched another of her children die unattended of the same illnesses. Treating Henry would be cheap: supplements and enriched food for his malnutrition, hydration pills to combat his diarrhea, and antibiotics for the infections. All of this was available, just a few miles away.

Franklin: A diagnosis

Paiz wheeled little Franklin out of the exam room. Tubes ran in and out of his body. An oxygen mask obscured his face. The array of medical devices terrified Morales.

"Why so much?" she whimpered.

The parents had heard conflicting diagnoses: An infection? A broken blood vessel? A lung problem?

What the doctors found was that Franklin had contracted pneumonia and bacterial meningitis. Both are infectious diseases, easily passed in crowded households or schools or villages.

Two vaccines -- Haemophilus influenzae Type b (Hib) and pneumococcal -- would offer fairly broad protection against pneumonia and meningitis, public health specialists said. The Guatemalan government mandates and pays only for polio, measles, tetanus, and DPT vaccinations in children.

The Pediatrics Association of Guatemala lobbied the government last year to add at least one of the pneumonia-fighting vaccines. The health ministry estimated the cost at up to $50 per child. Too much, the government replied, and the effort died.

Doctors found the meningitis had inflamed the membrane sheathing Franklin's brain. His life now hung in the balance.

Cries and coughs echoed around the ICU, which treats almost 100 children with pneumonia each month and up to 40 with meningitis. Double infections like Franklin's are rarer.

Paiz wheeled the boy away.

An hour later she returned: "Franklin has had a heart attack."

Veliz-Catalso tried to rush into the treatment room but was held back by nurses.

Paiz felt a surge of grief. She has a 2-year-old herself and could not imagine losing him.

Night passed into the morning of Oct. 25, and the exhausted parents waited on a wooden bench in the dank hallway outside the ICU, terrified at this plague that had swallowed their child so quickly.

Henry: 'Only God determines future'

   


DOING WITHOUT: Fifteen-month-old Henry Alexander Augustin Orozco suffers from severe malnourishment. Although health care is available nearby. Henry will go without the medical attention that could save his life.

On Oct. 25, Gutierrez was back just after sunrise, determined to confront Henry's father.

Vasquez wore rubber boots, ripped black jeans, an unbuttoned light-blue collared shirt, and a faded brown fedora as he greeted the doctor, who was accompanied by nurse Rosemary Gonzalez.

Vasquez grows corn for his family and for pigs in a nearby field. He used to pick coffee, too, but after Vietnamese coffee growers flooded world markets four years ago and raw coffee prices dropped by 50 percent, he stopped. It didn't pay enough. Guatemalan coffee production dropped by 40 percent, depriving the residents of hundreds of small towns much-needed income.

Many of Vasquez's friends and relatives also stopped picking coffee. A poor village grew poorer, and their children grew hungrier and sicker. A proud father, it was clear, could barely provide for his family.

"The boy seems to you as if he is in good health, but he's not," Gutierrez said. "He has problems, physical and mental. That's why we've been talking to your wife."

Vasquez nodded, as Gutierrez explained that Henry might have pneumonia, though he was unsure because he had never examined him. But he spied Henry wheezing in the family's kitchen enclosure, breathing in black smoke from a cooking fire.

Cooking fire smoke clogs lungs with up to 30 times recommended levels of air particulates, according to a series of studies over the last two decades. Here as in much of the developing world, it a little noted but common source of respiratory infections, including pneumonia. Switching to $5 ventilated clay stoves could result in a 20 to 45 percent reduction in child respiratory illness, according to a 2001 study by University of California at Berkeley researchers.

"We can give Henry milk, proper nutrition," the doctor told the boy's father, explaining that the local recovery center had a closetful of enriched rice in massive white bags. "We will watch him improve. We will monitor his weight." The center also had nutritional supplements and soft, warm beds, Gutierrez told Vasquez. "You should let us help."

"To treat children like that is a luxury for me!" Vasquez interrupted. "A luxury!"

"You need to do something in the next two weeks," retorted Gonzalez, the nurse. "Otherwise, your son will die! Think about the children. . . . It's not right, what you're doing!"

"Only God determines the future," Vasquez replied.

He quickly doffed his hat and walked away to the fields. Henry stared ahead, lying on his dirty blanket, oblivious.

Two weeks passed, and Vasquez still had not brought Henry to see the doctor. Gutierrez visited the house again, but no one was home. He cannot do this often; lines form daily at his clinic several miles away in Comitancillo.

"The reality is he doesn't want to bring his son to the recovery center," Gutierrez said. "I can't make it happen."

The doctor tried a desperation strategy: He sent a shipment of milk, beans, and cooking oil to the family -- and an open offer to provide any medicine needed free of charge.

Days later, he checked on Henry, finding the boy slightly more alert, although still very ill.

"The situation with the father won't change," Gutierrez said. "He's going to continue to deny us."

The doctor has had similar experiences trying to help other young, helpless patients this way, treating them from afar. Some die. Others struggle through.

"This is the only way now," the doctor said.

Franklin: 'You are my life!'

Franklin Veliz died shortly after noon on Oct. 25.

Weary doctors came out to break the news to the boy's parents. Veliz-Catalso began shaking, screaming, accusing the doctors of incompetence and worse. Morales sat quietly.

Veliz-Catalso took his son's body for burial back to their village in El Chile. Morales would not go. She stayed in the city with her mother. There, she slumped into bed and clutched her pregnant belly as she expressed, in her thoughts, the confusion and longing that enveloped her.

Where is Franklin? In heaven? Why isn't he here? What has happened? He was right next to me, just yesterday. He laughed, just yesterday. I caressed his cheek, just yesterday. Soon I will awaken from all this.

"Little Frankie, you are my life!" she cried out.

Morales curled into a ball in the corner of the bedroom. There were visitors, but she was very much alone. She sat up and smiled as she recounted a story about Franklin. Then she looked puzzled. The tears returned. And she could not get out of bed. "We were always together," she moaned.

Back in El Chile, Veliz-Catalso took his son's body to the local cemetery, a four-story-high mound of dirt with tiny black crosses poking out like needles on cactus. Green mountains rise up around it.

Franklin was placed in a gray mausoleum that belongs to another family. When he can afford it, Veliz-Catalso will buy his son a permanent grave. The young man, surrounded by family, stared quietly at the borrowed tomb.

Then, pushing his finger suddenly into the wet cement of the tomb's door he wrote: "FRANKLIN."

Postscript: A new life

On Nov. 24, Miriam Jessenia Morales Mancias gave birth to a healthy 8-pound boy. She held him, touched his soft face, rocked him gently.

There remain problems: Veliz-Catalso has grown distant since Franklin's death and has not traveled from El Chile to Guatemala City to see Morales and their new son. She has decided to leave him.

Morales cannot produce enough breast milk for the baby.

"I don't even know how I'm going to buy milk," she said. "I don't have money."

They are alone, mother and son.

"I will start a new life," she said. "Just my baby and me."

Raja Mishra can be reached by email at rmishra@globe.com.

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