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Stories from the Americas

Four-year-old Juan has captured the heart of every doctor and nurse in the tuberculosis unit in which he has been living and receiving treatment for the last six months. Despite his separation from his family and his confinement to a wheelchair, Juan has maintained both his sweet demeanor and his playfulness. Although he says only a few words, he likes to give hugs and greets everyone with a smile. The resident physicians often wheel him out to their work area, where they let him play with their stethoscopes. Juan embodies the innocence of childhood: oblivious to the severity of his own illness and to his family’s tragedy, he continues to laugh and play. Nevertheless, there is little doubt that tuberculosis will leave both physical and emotional scars on this young boy.

Until six months ago, Juan lived with his family in El Agustino, the district with the highest incidence of tuberculosis in Lima. Approximately one year ago, Juan’s mother first became ill with pulmonary TB. Initially, she complied with her treatment, and her health improved. However, after a few months, Juan’s father left her for another woman, and she plunged into a deep depression and stopped taking her medicines.

A couple of months later, Juan developed a progressive cough. He was diagnosed with bacterial pneumonia and treated with a course of antibiotics, which failed to cure his cough. One day while playing, Juan fell and injured his back. He was brought to a referral hospital, where doctors diagnosed him with a fractured spine. Luckily, his spinal cord had not been damaged. However, the accident left him with a prominent hump in his back, and significant pain when walking.

Testing revealed that Juan actually had both pulmonary TB and Pott’s disease (TB of the spinal column)—which predisposed him to his injury. Furthermore, his TB was due to a drug-resistant strain, most likely transmitted from his mother. As a result, he was hospitalized not only for TB treatment but also to prevent further injury to his spine.

Juan’s mother never visited her son in the hospital. She was too sick, and eventually died of respiratory failure as a result of her TB. Juan’s grandmother, the family’s sole wage earner, visits Juan when she has time between working and caring for her disabled son. Juan’s treatment has so far been successful, but he still has a long road ahead of him. After another year of treatment, he will finally be ready for spinal surgery. Thanks to the excellent medical care he is receiving at the referral hospital, Juan will likely be able to walk again without pain and fully recover his lung function. Unfortunately, modern medicine cannot heal the emotional scars that he will undoubtedly have from the loss of his mother to DR-TB.

Story Collected by: Hernán del Castillo (Instituto Nacional de Salud del Niño), Silvia Chiang (Children’s Hospital Boston and Partners In Health), and Leonid Lecca (Partners In Health)
Photo credit: Otsuka Pharmaceuticals/Riccardo Venturi

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The name of the child in this story has been changed to protect confidentiality.

Four-year-old Lucia lives in northern Lima, Peru with her parents, older sisters, and older cousins. Her grandmother and aunt used to live there, as well, but they both died of tuberculosis (TB) several years ago. A third cousin also living with them was diagnosed with TB, but dropped out of his treatment early to work in Italy to send money back to the family.

In 2010, when Lucia turned four, her 18-year-old cousin was diagnosed with pulmonary TB. He completed the standard six months of treatment for TB, but shortly after began to cough up blood. He was transferred to a hospital in Lima for re-evaluation. There, doctors confirmed that he had multi-drug resistant TB (MDR-TB), and started treatment with second-line drugs. A few months later, through the evaluation of her contacts, doctors suspected that Lucia might have TB, and decided to initiate MDR-TB treatment.

While Lucia was lucky to receive a prompt diagnosis, her treatment has been extremely difficult. She withdrew from school, as she was attending so irregularly due to headaches or fatigue. Lucia is tormented disturbed by loud noises and talks with imaginary friends. It took her months to tolerate her injections without crying. But Lucia is brave. Her mother recalls, “One day when they applied the injection, Lucia cried a lot and I started to cry with her. Seeing me cry, my daughter told me, ‘Mommy do not cry, I am strong … look I’m not crying.’”

The whole family also suffers from Lucia’s illness, including the accompanying stigma. Lucia used to chat to the neighbors, “Hello, hello I’m going to the clinic to take my meds!” Lucia’s sister reports, “We had to tell her not to say that, because some neighbors want us to move. Lucia’s mother wishes she had more support about how to care for Lucia at home and ease her discomfort, or even just someone to listen to her. Lucia’s mother has also been delaying surgery for a medical problem of her own: though she has intense abdominal pain, she “acts strong so as not to worry the family.” Her priority now is to provide for her family, give them all the love that is possible, and above all, help cure Lucia.

Story Collected by: Carolina Morán, Carmen Contreras and Leonid Lecca (Partners In Health)

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The name of the child in this story has been changed to protect confidentiality.

José, 15 years old, was leading the life of a normal teenager in Lima, playing soccer, going to school and hanging out with his friends. When he began to feel extremely tired, his mother thought it was just a normal part of teenage development.

But one day, José’s mother was talking to a relative about their neighborhood, Cerro San Cosme, who mentioned how it had many tuberculosis (TB) cases. José’s mother took him to the hospital. There, he was confirmed to have TB. This greatly alarmed his mother, because José had an uncle who had lived in the same house as them, and who had been receiving treatment for TB for over ten years. From 1998, the uncle had abandoned course after course of increasingly intensive treatment regimens, ending with an individualized treatment plan, which he currently takes in prison.

Given this history, José’s doctors decided to wait for the results of drug susceptibility testing of José’s strain before starting treatment. While José waited for his results, he had a severe instance of coughing up blood, and underwent emergency hospitalization. His doctors, recognizing treatment could no longer wait, started him immediately on second-line TB drugs. The following day, José’s strain was confirmed resistant to two first-line drugs, indicating multi-drug resistant TB (MDR-TB).

José was hospitalized for 12 days. Afterwards, he began taking his medications in the health center. After four months of treatment, he now feels much better. But he still suffers from his daily injections. He hopes that his doctor will reassess him to see if it is possible to remove the injection part of the treatment regimen, and he can begin to resume his normal teenage life.

Story Collected by: Cynthia Pinedo, Carmen Contreras and Leonid Lecca (Partners In Health)

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Dayana began her battle with drug-resistant tuberculosis (DR-TB) when she was just two years old. Her mother had finished a six-month first-line treatment course for TB, but was still testing positive for TB.  Dayana’s mother started on DR-TB treatment. Both she and her doctors were very concerned about the health of her children. Although Dayana had no complaints, she came to the hospital to be evaluated.  A CT scan revealed that Dayana, too, needed treatment for DR-TB.

The related analyses and the tests were very expensive for Dayana’s family, leaving them sometimes with less than $2 per day for food. Dayana’s father, a sailor who is rarely home, offered little financial or emotional support. Dayana and her mother also faced terrible discrimination as a result of their DR-TB, even from their own family. Dayana’s grandparents, with whom they lived, closed them off from their part of the house, and sometimes shouted at them. Dayana cried often.

Due to financial obstacles, Dayana had to wait a full six months after her initial diagnosis to begin her treatment for MDR-TB. While beginning treatment was a positive step, it was also a very difficult one. The MDR-TB drugs gave Dayana chills, made her extremely sleepy, and frightened her by changing the color of her urine. She hated the taste, which Dayana’s mother tried to mask by combining the pills with yogurt, strawberry juice or papaya.

But the worst part of all for Dayana was the painful injections. She resisted being touched in the area where they were administered, and cried every time she went to the health center or saw the nurses bringing needles. Her injection area would grow hot to the touch, and she had difficulties walking properly after the injections. Dayana would plead with her mother, “Mama, I do not want to, I’ll be good.”

Dayana’s health has improved after six months on DR-TB treatment. Her grandparents have now let them back into the rest of the home, and Dayana will enter nursery school soon. Dayana is very happy, saying she will “now have friends.” But her occasional display of anxious and violent behavior, and her increased sensitivity, persist.

Struggling financially and with the toll of both her and her daughter’s DR-TB, Dayana’s mother has also been emotionally and psychologically changed. She has been diagnosed with depression, but has no money to pay for her prescriptions. And yet, she tries to be strong for Dayana and her other children. With no money for transportation to the health center, Dayana’s mother walks hand-in-hand with her children for two hours each day, with only their jokes and an “I love you” to keep them moving onwards.

Story Collected by: Haydee Callata, Carmen Contreras and Leonid Lecca (Partners In Health)

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Nazhira and her mother, long ago abandoned by Nazhira’s father, moved to Lima when Nazhira was two and her mother needed treatment for cervical cancer. As Nazhira’s mother earns just 5 USD a day cleaning a hostel, they had to stay in a room with her mother’ friends, one of whom had recently started treatment for tuberculosis (TB).
When Nazhira was four, her mother brought her to the health center, and then hospital, noticing she was losing weight and had no appetite. They recommended that she start treatment for TB. Her mother, sad and guilty, worried that, “by coming to Lima for cancer treatment, I made my daughter sick.”

The medications affected Nazhira terribly, causing nausea and vomiting. Her doctor exchanged the pills for syrup, which tasted terrible. Her mother had to play games with Nazhira to convince her to take her treatment. Nazhira was almost halfway through her first-line treatment when the friend with whom they’d been living was confirmed to have multi-drug resistant TB (MDR-TB). Nazhira’s doctors wisely recommended changing Nazhira’s treatment to second-line drugs.

This meant that all the time, effort and pain spent on the previous treatment had been in vain—Nazhira and her mother would have to start again from scratch. Making matters worse, two days later, Nazhira’s mother was also diagnosed with TB and hospitalized. With no other family, Nazhira was placed in the care of the sisters of the church. Nazhira was suffering not just from this unfamiliar environment, but also from her new treatment. For a long time, she cried with each painful injection.

But soon Nazhira was reunited with her mother, who told her that the treatment would help her be, “healthy and beautiful [so she could become] a model.” She began to accept the shots better. Now, in her sixth month of treatment, she feels much better, has gained weight and is very excited by the prospect of beginning school.

Story Collected by: Cynthia Pinedo, Carmen Contreras and Leonid Lecca (Partners In Health)

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The name of the child in this story has been changed to protect confidentiality.

Baby Cristina’s first birthday should have been a happy occasion. However, instead of eating cake and receiving presents, Cristina spent most of the day in the back of an old ambulance that carried her the six hours from a local hospital in central Peru to a referral hospital in Lima. By the time she arrived in the emergency department, Cristina was barely responsive to stimuli, and her left pupil was fixed and dilated—a sign of impending death from brain swelling.

Cristina lived with her family in the jungle district of Junín, one of the poorest regions in the country. Several months after Cristina was born her mother became ill, and was symptomatic for months before being diagnosed with TB.

Two weeks before her first birthday Cristina began experiencing fevers and a cough. Her parents gave her a fever-reducing medicine, but her symptoms became more severe. Five days later Cristina’s parents took her to the local health center, where she was diagnosed with a cold and sent home. Two days later, Cristina had a seizure. Returning to the local hospital, she was again given medicines for her cough and fever, but was not evaluated further and was discharged after a day of observation. However, Cristina became increasingly drowsy over the next several days, so her parents again returned with her to the hospital. Her clinical status quickly worsening, the staff decided to transfer her to Lima. Her father accompanied her while her mother, undergoing treatment for her own TB, stayed in Junín.

At the hospital in Lima, neurosurgeons performed an emergency operation to save Cristina’s life. Her doctors determined that she had already suffered permanent brain damage, and most likely had both pulmonary TB and TB meningitis. The physicians believed that she had most likely caught TB from her mother, but, despite their many efforts, were unable to obtain any specific information about her mother’s illness or treatment course from Junín to know if she had a drug-resistant strain. As a result, Cristina began the standard treatment for drug-sensitive TB while her diagnostic tests were pending.

After a month of treatment, Cristina’s clinical status still had not improved, and her medical team began to suspect DR-TB. Her laboratory tests soon confirmed that she had multidrug-resistant TB (MDR-TB). The pulmonologists immediately altered the drug regimen. In the meantime, she underwent another surgical procedure and received several medicines to prevent further brain swelling and seizures.

Unfortunately, despite aggressive treatment, Cristina’s clinical course slowly progressed, and, four months later, she died of progressive brain swelling. The doctors who cared for her expressed hope that a lesson could emerge from this tragedy: that providers at every level of the health system should consider and evaluate for TB, particularly when a member of the household also has active TB. Baby Cristina presented to care multiple times before she finally received appropriate diagnostic studies and treatment. If Cristina had been diagnosed earlier, she might have survived.

Story Collected by: Hernán del Castillo (National Institute of Child Health [Instituto Nacional de Salud del Niño]), Silvia Chiang (Children’s Hospital Boston and Partners In Health), and Leonid Lecca (Partners In Health)

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