Lebogang – Botswana

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

By the age of just two years old, Lebogang, a child from a small village in Botswana, had already been through more than most people experience in a lifetime. Lebogang is HIV-positive and has been on treatment since his first year of life. In early 2010, Lebogang’s mother was diagnosed with TB.

A few months after his mother got sick with TB, Lebogang too began experiencing symptoms of illness; he lost weight and suffered from a severe cough. A few months later, his doctor diagnosed him with TB without any culture confirmation. In March 2010, Lebogang started taking first-line TB medicines, and during this same time, unfortunately, lost his mother to TB.

After eight months of treatment, the recently orphaned Lebogang appeared to be getting better. In November 2010, after less than a month’s reprieve from his own battle with TB, Lebogang’s symptoms returned. This time, Lebogang also had symptoms of central nervous system disease, including abscesses on his brain. Lebogang’s doctor did not think this resurgence of symptoms could be caused by TB as Lebogang had already completed treatment with first-line drugs. Despite Lebogang’s symptoms and his mother’s poor outcome from TB, his doctor did not consider drug-resistant TB. Instead, he considered other diagnoses such as toxoplasmosis, a parasitic disease.

Finally, in late 2010, a TB culture was done for Lebogang and a positive TB result was produced in January 2011. Lebogang was not put onto appropriate therapy until February of 2011—nearly a full year after his initial diagnosis of TB. In addition to the failure of his doctor to provide a timely diagnosis, this delay was in part due to the lengthy time required for DST—which showed resistance to several first-line drugs including isoniazid, rifapentine, streptomycin, and ethambutol. Appropriate treatment was further delayed as a result of difficulties in finding a caregiver for Lebogang who could commit to directly observing his daily treatments. Eventually, the clinic agreed to administer treatment at Lebogang’s home. An aunt put her studies on hold in order to care for her orphaned nephew, at the cost of her own education and potential for future increased income generation.

By the time Lebogang accessed appropriate treatment, his brain lesions were extensive. A painful brain abscess biopsy confirmed that he had DR-TB of the central nervous system. Lebogang initially responded to his treatment, but it was too late—because of the extensive damage already done to his central nervous system, he passed away in July 2011. Just three years old, Lebogang spent half of his life fighting a losing battle against drug-resistant TB.

Story Collected by: Tonya Arscott-Mills, MD, Botswana-UPenn Partnership, Gaborone, Botswana