A Baby's Battle with XDR-TB in Peru

Vanessa Colchado couldn’t believe what the doctor was saying. True, her 6-month-old son, Hans Veliz, wasn’t thriving like other babies his age and occasionally had a fever. But he didn’t have a cough. So how could the doctor point to small spots on her son’s pulmonary x-rays and say it was tuberculosis? That was the same disease ravaging her boyfriend.

“I started to cry,” says 29-year-old Colchado, vividly remembering the day. “I ran to the car and I cried and I held my son.”

Tragedy struck again just weeks later. Colchado’s partner, Francisco “Rudy” Veliz, died on December 31, 2013, of extensively drug-resistant tuberculosis (XDR-TB)—the worst form of the infectious disease. Seven days later, their son was admitted to the National Institute of Children’s Health in Lima, Peru, to begin his two-year battle against the same disease. The mother and son were not alone. Socios En Salud, as Partners In Health is known in Peru, was with them every step of the way.

PIH has a 20-year history of collaborating with Peru’s Ministry of Health to treat multidrug-resistant tuberculosis (MDR-TB) in children and has reached cure rates of more than 80 percent, in line with the best programs in the world. The program is based on sound diagnosis, thorough treatment, and the compassionate care of community health workers, who visit patients at home to ensure they take their medication and have everything they need—food, housing, and transportation to doctors’ appointments. In fact, PIH has been so successful treating MDR-TB that it, among other organizations, influenced the World Health Organization to adjust its treatment guidelines in 2001.

Identifying TB in children

PIH staff have seen all forms of TB in Carabayllo, the urban slums where they work on the outskirts of Lima. Some of the most challenging cases to diagnose and treat, however, have been among children.

When adults contract TB, they typically develop tell-tale symptoms. A cough that lasts for more than two weeks. Fever. Night sweats. Weight loss. Fatigue. The infectious disease often settles in the lungs and is slow and stealthy, killing 1.5 million people every year and making it the world’s deadliest disease.

TB develops outside the lungs much more frequently in children.

When children develop TB, it’s often asymptomatic. They might never have a cough, but have a distended stomach or lumps in their neck or armpits. And they might act as mischievous and energetic as ever, while the disease spreads through their entire bodies, manifesting in their brains, kidneys, intestines, bones, and skin.

“TB develops outside the lungs much more frequently in children,” says Dr. Leonid Lecca, executive director of PIH in Peru and an expert in pediatric TB. “Their defenses are more vulnerable, because they’re still developing their capacity to protect themselves.”

TB is most often diagnosed through a sputum sample, which adults usually have no problem producing. But infants and young children can’t cough and spit voluntarily, so doctors conduct more advanced or invasive exams to arrive at an accurate diagnosis.

Among the best diagnostic options is an x-ray of the child’s chest and back. The problem in Peru, Lecca says, is that doctors don’t always have the expertise to read children’s x-rays. And doctors who refer children to pulmonary specialists often don’t realize that their patients will never follow through, because they can’t afford transportation to Lima-based hospitals or fees for advanced tests.

Peru’s Ministry of Health estimates that 7 percent of the 30,000 people diagnosed annually with TB are children. Lecca believes that, if cost or transportation to reference hospitals were not an issue, that number would be much higher, considering that 20 percent of all TB cases worldwide are pediatric.

“There’s a gap,” Lecca says. “How much is that gap? As many as 500 or 1,000 children?”

Losing a battle

Hans could easily have fallen into that gap. For months, Colchado had been living with Veliz, whom she knew was being treated for MDR-TB. PIH had helped him get an accurate diagnosis and start treatment in early 2013. His health improved after several months of daily medication. Once he was no longer contagious, staff helped him get a loan through its income generation program, which he used to open a video store and start a mototaxi service.

Oscar Ramirez, the program officer for PIH in Peru, got to know Veliz during that time and saw him as an energetic young man who had turned his life around—a steady income, a girlfriend, and a newborn son. Ramirez visited him off and on throughout the year. The last visit he made was in December to check why he had fallen behind repaying his loan. One look spoke a thousand words.

With TB patients, sometimes there are only a couple of weeks that you have to act.

Weak and emaciated, Veliz shuffled out of his bedroom to greet Ramirez. It was clear he had fallen ill again and was likely contagious. Ramirez and his colleague, field supervisor Genaro Ancco, tried to convince the young man of the importance of getting back on medication. Then they thought of Hans.

“Where is the baby sleeping?” Ramirez remembers asking. Colchado told him, “’We’re all sharing the same room.’”

Ramirez advised Colchado to keep the baby away from Veliz while he was sick and promised to return after Christmas vacation to follow up. He didn't realize how little time the young father had left. When he returned a couple weeks later, he learned that Veliz had died on New Year’s Eve.

“With TB patients, sometimes there are only a couple of weeks that you have to act,” Ramirez says, filled with regret. “Attention needs to be given now, immediately.”

Seeking a cure

It was a painful lesson to learn, for Ramirez and the entire organization. Instead of despairing, he focused on getting Hans the care he needed following his TB diagnosis. Considering Veliz’s MDR-treatment had been irregular, doctors assumed he had developed the more potent form, XDR-TB, which he then unknowingly passed on to his son.

PIH advocated on Hans’s behalf and quickly got him admitted to the National Institute of Children’s Health in downtown Lima on January 7, 2014—one week after his father’s death. Colchado barely left her son’s bedside for more than three months. Her mother brought her dinner most nights and relieved her occasionally so that she could go home, shower, and rest. PIH staff brought diapers and supplies to the hospital. Mostly, though, they provided much-needed psychological support for the newly single mother.

Treatment for drug-resistant TB is brutal. Nearly a quarter of children permanently lose their hearing from the daily injections they receive for months on end. They take thousands of pills that cause side effects ranging from nausea to temporary psychosis. This goes on for up to two years. Because no drug trials are allowed on children, doctors use guesswork to determine proper dosage and length of treatment.

“Many times, doctors treat children like tiny adults,” Lecca says. That’s a problem, because children metabolize drugs differently. Luckily, children tolerate even high doses of medication quite well.”

Colchado happily reports that Hans is a "completely normal" boy, holding him close near their home on the outskirts of Lima, Peru.

That was the case for Hans. He was eight months old when he started treatment in February 2014. A brief allergic reaction disrupted his care for several weeks as doctors tried to determine its origin. Other than that, he had few complications from his shots and pills.

“That little boy never complained,” Ramirez says. “When you’re born in that type of reality, I imagine you don’t complain as much.” The only thing that seemed to bother him was his stomach. Occasionally, Colchado told Ramirez, Hans wasn’t hungry in the afternoons and refused to eat.

Now, two years after starting treatment, Hans is cured. Colchado can finally talk about the ordeal with more ease. It’s been a long road—one that robbed her of her partner, forced her to her knees alongside her son’s bedside, and tested her faith.

She watches Hans, who turns 3 in June, scribble on a scrap of paper as she recounts his story. He’s busy enjoying his terrible twos. He’s gained weight, is constantly in motion, and grabs at everything within reach.

“The medications he’s taking are very strong and that might be why he’s a little hyperactive,” Colchado says, trying to explain his turbulent nature. “The doctor told me that he’s completely normal.”

Completely normal, for a boy who conquered a life-threatening illness within months of being potty-trained.