h1

Stories from Africa

“He was quiet when he died,” reported Thabo’s auntie. “He hardly made a sound. I would almost never have known if it hadn’t been for the flies, really.”

These were the words that announced the death of eight-year-old Thabo, a small boy who died in Soweto, South Africa. The clinic knew Thabo well—he had first come there with his mother, a young woman who was found to be both mentally ill and to have HIV. She was admitted to the mental ward, and Thabo took to sleeping on the clinic floor until his aunt finally picked him up. Eventually, his mother’s health improved and she came home; Thabo enrolled in school. Although he remained small for his age, things were looking up for him and his family.

That soon began to change. Thabo developed a fever, and would sweat terribly in the night. He was too weak to go to school. Thabo’s mother began to cough. On a rainy morning while hanging laundry, she spat bright red blood onto a clean blue sheet. Terrified, she returned to the clinic, where she found that she had TB. Worse, the strain she had was resistant to at least one of the first-line drugs. Her clinic referred her to another hospital, but without money to go there, she hiked back home.

Over the next weeks, Thabo and his mother became sicker and weaker. They barely ate, and garbage piled up outside their home. His auntie finally came with money to go to the clinic. Everyone was frightened by the way the doctor stopped everything and moved quickly to Thabo’s side upon their arrival. “This boy is critical,” he said, and everyone moved to let him pass. He found large lumps in Thabo’s neck and fluid in the boy’s belly. “They must go to the other hospital now!” he shouted, so worried that he even gave them taxi fare from his own pocket.

When the hospital medical officer saw Thabo’s mother’s paper from the clinic saying she had DR-TB, he ordered her home. He was frightened for his other patients, and he did not have medicine for patients with DR-TB. He prescribed the mother and son first-line TB treatment—even though both likely had the drug-resistant form of the disease. They lay in the grass outside the hospital and waited for days.

Thabo’s mother died there. A nursing sister who knew Thabo’s family found him, barely able to lift his head, and drove him to his auntie’s. Thabo still sweated in the night. His body still shook from chills. The lumps in his neck grew bigger and he, too, began to cough up blood. He grew smaller, but his belly grew bigger. He was visited every day by a worker from the TB clinic, and he took his first-line medications in spite of the nausea it brought him. It was just a few hours after receiving his directly observed dose of drugs that Thabo died alone in a corner, covered in flies. “At least they gave me money for the funeral,” his auntie remarked. “At least this way we can finally do something nice for Thabo. We can give him a small place to rest. And to know his peace.”

Story Collected by: Jennifer Furin (TB Research Unit at Case Western Reserve University)

Back

When a charity group in Addis Ababa, Ethiopia found 17-year-old Fetene, he weighed just 66 pounds. Fetene had been sick with tuberculosis (TB) since he was 13, and had already cycled through three grueling, ineffective TB treatment regimens. His parents had abandoned him, leaving him severely malnourished and isolated.

Fetene was taken by the charity to a government hospital. There, doctors found that TB had ravaged not only Fetene’s lungs, but also his stomach. Given his clinical symptoms and his previous, multiple TB treatment regimens, Fetene’s doctors presumed that he had drug-resistant TB (DR-TB) and started him on appropriate treatment.

But by then it was too late for Fetene. Because his disease had gone undiagnosed for years, he was so sick he developed another lung infection. Furthermore, the years without a diagnosis and proper treatment rendered his body too weak to fight.  After less than two months on his DR-TB regimen, Fetene developed respiratory failure and died.

It took four years for Fetene to receive an appropriate diagnosis and treatment for his MDR-TB. In the meantime, he lost not only his health, but also his family and any other form of social support. By the time Fetene did receive a proper diagnosis and adequate care, it was too late.

Story Collected by: Daniel Meressa, Global Health Committee (St. Peter’s Hospital), Rocío Hurtado (Global Health Committee, Massachusetts General Hospital, and Harvard Medical School), Anne Goldfeld (Global Health Committee, Brigham and Women’s Hospital, and Harvard Medical School), and Sok Thim (Global Health Committee)

Back

Oyella Mercy is a 15-year-old schoolgirl from Kitgum, in northern Uganda. She is receiving treatment for MDR-TB in a program run by a nongovernmental organization. Oyella Mercy describes how she caught the disease: “It was transmitted from our father. He died in 2008 at the hospital. I was 13 years old when I got TB. I had stomach pains, and a cough, and I used to vomit. I went to hospital, just me myself, for one year.”

Her original treatment course failed, and in 2010 she was diagnosed with MDR-TB. She began treatment for her disease, which is now being provided within her own home. “I started getting injections for six months. After stopping, I started taking drugs. Some drugs are difficult: I felt pain in the joints and stomach pains.”

Oyella Mercy is living in a thatched hut constructed for her by the nongovernmental organization in her family’s compound. Now in the last few months of her treatment, and no longer infectious, Oyella Mercy is well enough to have returned to school. “Now I am feeling a little good. I’m going to school—I like learning. When the treatment is finished in May, I’ll feel happy, I’ll play with my friends and I’ll dance, because I’ll be cured.”

Story Collected by: Natasha Lewer (Médecins Sans Frontières) and Andrea Stultiens (freelancer)

Back

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

In early 2008, Paki, just five years old, developed a severe deformity of his spine. He was referred to a hospital in Cape Town, where a scan revealed a large, infected abscess. Despite Paki’s not having known contact with anyone with the disease, his doctors wisely suspected TB and started him on first-line anti-TB treatment. After staying in the hospital for two months, Paki could finally return home to finish his treatment.

But months after Paki returned home, his spine was worsening. Returning to the hospital, he had a second scan. The abscess had worsened, and Paki’s spinal deformity had become more pronounced. Again his parents said that there had been no contact with anyone with TB. A further drug was added to his treatment, but one month later, his spine had deteriorated still further. Six-year-old Paki underwent surgery.

The surgeons removed the infected area and fused a number of the vertebrae together. The laboratory detected TB bacteria in the removed samples, but they could not perform testing for drug resistance because the bacteria wouldn’t grow in the lab. Paki’s doctors continued to monitor him, and after seeing his condition worsen a month later, started him on treatment for MDR-TB. Each day, Paki had to have an injection and take seven tablets. He also had to have a second operation to further decompress and straighten his spine.

After a few days, it was discovered that Paki’s family member and former caregiver had been diagnosed with MDR-TB of the lung in 2008. Paki was transferred to the regional drug-resistant TB hospital, where he remained for six months, receiving daily injections. He also had to have regular blood tests to monitor the functioning of his kidneys and thyroid, as well as audiology testing to monitor his hearing (commonly damaged by second-line anti-TB drugs). Finally, Paki returned home, where he continued his grueling treatment for an additional year. Paki finished his treatment and is clinically very well, but his deformed spine bears witness to his struggle against DR-TB.

Story Collected by: Simon Schaaf and James Seddon (Desmond Tutu TB Centre)

Back

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

In late 2009, Lesedi and his twin sister were born. Their mother had suffered from highly drug-resistant TB during pregnancy and tragically died soon after giving birth. Because their mother had been so ill, the twins had had no contact with her after they were born. Orphaned by TB, their aunt and grandmother cared for them.

In mid-2010, Lesedi was admitted to a hospital with a chest infection. There, after having a suspicious chest X-ray, he was found to have a strain of TB resistant to many of the standard anti-TB drugs. He began treatment for XDR-TB. This involved six months of treatment in the hospital with second-line anti-TB drugs, both oral and injectable. He then received a further year of treatment at home. Fortunately, Lesedi’s sister was well, and was given preventive therapy as an extra precaution. Currently, both Lesedi and his sister are growing and developing well, and are free of TB.

Story Collected by: Simon Schaaf and James Seddon (Desmond Tutu TB Centre)

Back

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

Molahlehi was fifteen years old, and weighed just 73 pounds, when he was referred to treatment in an MDR-TB program. Having first been treated for TB when he was 11, he had already received two previous, ineffective courses of first-line anti-TB treatment. Molahlehi had lost his mother, father, and brother to TB while they were receiving the same first-line treatment.

Molahlehi’s new clinicians realized that his family members had probably had MDR-TB. As such, they began Molahlehi on MDR-TB treatment immediately. Three months later, Molahlehi’s culture-based drug susceptibility testing surprisingly revealed that his TB was actually still susceptible to four of the main first-line anti-TB drugs. However, these results could not be confirmed because of difficulties in obtaining further positive cultures. Because Molahlehi had such extensive damage in both lungs (including fibrosis and cavitary lesions), his doctors continued administering second-line drugs, and added three first-line drugs.

Molahlehi suffered many adverse effects from his treatment, including vomiting; joint pain; low potassium levels in his blood; hypothyroidism; and damage to his kidneys, ears and nerves. At one point, Molahlehi’s lung collapsed, and he required a chest tube. His clinicians monitored him closely and addressed these concerns as quickly as possible.

In addition to the painful and invasive procedures, and the difficulties of tolerating multiple toxic drugs, Molahlehi experienced severe depression and social isolation. It turned out that the depression was due to his hypothyroidism, and his mood improved immediately when he was started on thyroxine replacement therapy. Molahlehi’s aunt had been taking care of him before his diagnosis of probable MDR-TB, but she abandoned him when he received his diagnosis. After some discussion between his physicians and his family, the aunt eventually took him back into her care, but she made him stay outside of the house, even after he was not contagious. Molahlehi dropped out of school; he couldn’t stand his classmates making fun of how thin he was.

But Molahlehi was strong, and stuck with his MDR-TB treatment for all 20 months until he was cured. With support from a nongovernmental organization, he began income-generating activities, including making and selling jerseys, rearing and selling rabbits, and gardening. Molahlehi has returned to school, and now supports his aunt and his cousins with his hard-earned income.

Story Collected by: Megan McLaughlin, Hind Satti, and KJ Seung (Partners In Health)

Back

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

Naleli, eight years old, was orphaned by TB. Her father had been a miner in South Africa, a population heavily affected by TB, and likely was the first one in their household in rural Lesotho to fall ill. Both Naleli’s parents died while on first-line TB treatment.

As if this wasn’t enough hardship for Naleli to face, she herself became ill. She received a course of first-line TB treatment, despite her parents’ unresponsiveness to those same medications. When doctors finally performed drug susceptibility testing for Naleli they found that she was indeed resistant to four main anti-TB drugs. She was sent to a referral clinic run by the Ministry of Health in collaboration with a nongovernmental organization. Her chest radiograph showed severe disease: the TB had affected both sides of her lungs and created a cavity.

Naleli started therapy for her MDR-TB, but her path was still paved with difficulties. She was also found to be infected with HIV. And because her HIV had been untreated, her CD4 cell count was extremely low (20 cells/mm3). Two weeks into her MDR-TB treatment, she started HIV treatment as well.

Naleli’s HIV and TB treatment required her to take multiple medications with terrible side effects. The toxic drugs affected her liver, her thyroid, and the potassium levels in her blood. They gave her a rash, and made her anemic. Fortunately, Naleli’s health care providers monitored and managed these symptoms by giving her supplements and switching regimens when necessary.

The painful effects of Naleli’s MDR-TB extended far beyond her physical health. At home, things were difficult for her. After being hospitalized for the first nine months of her treatment, Naleli, without a primary caregiver, bounced between family members’ houses and an orphanage. Taunted by other students, she could not attend school.

While Naleli’s 24 months of treatment ended with the successful cure of her MDR-TB, her story is far from a happy one. MDR-TB robbed her of both her parents. Her original doctors ignored this, placing her on ineffective therapy. When she finally did receive appropriate treatment for both her MDR-TB and her HIV, it ravaged her body for over two years. And she didn’t just suffer physically: her schoolmates ostracized her and her family abandoned her. Though cured, it is hard to imagine that Naleli, now just 10 years old, is not forever scarred by these experiences.

Story Collected by: Megan McLaughlin, Hind Satti, and KJ Seung (Partners In Health)

Back

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

Maleshoane was considered a burden and abandoned by her mother at the Queen Elizabeth II public hospital in Maseru, Lesotho. Weighing just 55 pounds, with a collapsed lung, 13-year-old Maleshoane had been on ineffective treatment for tuberculosis for almost four years. Partners in Health learned of her case, and brought her to the national multi-drug resistant TB (MDR-TB) program.

Given Maleshoane’s numerous failed previous treatment courses, and her close contact with an MDR-TB suspect, her clinicians started her immediately on empiric treatment for MDR-TB. Partners in Health staff also counseled Maleshoane’s mother, who eventually took her back after two months of her MDR-TB treatment in the hospital. Six months into her MDR-TB treatment, her drug susceptibility testing results confirmed that Maleshoane did indeed have MDR-TB (resistant to three first-line drugs).

Maleshoane was eventually cured, but it took over two years of MDR-TB treatment. During this time, she experienced many serious adverse effects of treatment, including potassium deficiency, hypothyroidism, hearing loss and nerve damage. She also nearly lost her left lung to extensive fibrosis.

Maleshoane, now 15 and healthy, is a living testament to the need for more aggressive diagnostic efforts and empiric treatment for children with TB who are not cured by a first-line regimen. Maleshoane’s original doctors likely exacerbated her drug-resistance and took years away from her by subjecting her to multiple ineffective regimens with one new drug added at a time. Additionally, her initial abandonment by her mother, and their subsequent reunion, demonstrate the benefits of intensive counseling for caregivers of pediatric MDR-TB cases.

Story Collected by: Megan McLaughlin, Hind Satti, and KJ Seung (Partners In Health)

Back

%d bloggers like this: