Naleli – Lesotho

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)