The name of the child in this story has been changed to protect confidentiality.
Jomo never knew his mother. Five days after giving birth to him, Jomo’s mother died. She was HIV-positive and treated for TB during her pregnancy.
In April 2012, three-month-old Jomo began showing signs of illness. His family brought him to a private hospital to be evaluated. The clinicians struggled to obtain a sputum sample from three-month-old Jomo, but were eventually successful. They performed cultures and a GeneXpert test. Jomo’s family had to pay for these expensive tests, placing a significant financial burden on the family.
Four months later, in August 2012, Jomo was diagnosed with MDR-TB. His cultures and GeneXpert results showed that his strain of TB was resistant to streptomycin, isoniazid, and rifampicin, three of the four first-line drugs.
Jomo experienced delays not only in obtaining a diagnosis, but also in treatment initiation. The private hospital where Jomo was diagnosed did not have an isolation facility for MDR-TB patients, and none of the clinicians felt confident in their ability to treat an infant with MDR-TB. Jomo finally started treatment in October 2012, after he was referred to a government hospital.
The government hospital is far from where Jomo and his family live. The distance makes daily DOT visits difficult, but the treatment is free, providing some financial relief for the family. Audiometry (the testing for hearing loss, a common side effect of second-line TB treatment) is uncommon, and the health care workers who do perform audiometry do not want to go near Jomo or other patients with known DR-TB. Jomo is too young to voice complaints, and as a result Jomo’s doctor struggles to detect adverse events.