James – Swaziland

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

James was diagnosed with drug-resistant (DR-TB) when he was two years old. His doctors came to this diagnosis because his mother had a positive multidrug-resistant (MDR) TB test and because James did not respond to treatment with first-line drugs. When James’ mother was first diagnosed with MDR-TB, her treatment was delayed due to miscommunication about her medical transfer forms. As a result of this delay, James’ mother died in July 2011 without ever receiving MDR-TB treatment. She had slept with her baby James in the same bed since he was born.

James was initially seen at a nearby clinic, where he was unsuccessfully treated with a TB regimen of first-line drugs. After a month, he was transferred to a hospital and started on MDR-TB treatment. He stayed at the hospital with his grandmother for a month while receiving MDR-TB treatment, in addition to treatment for HIV disease and severe malnutrition. Médecins Sans Frontières paid for transportation from home to the hospital after James was discharged. If James and his grandmother did not have access to these funds, they would have had a very difficult time getting to and from the hospital. Many other children and families in nearby communities are not so lucky and suffer a significant financial burden trying to access treatment.

James’ grandmother reports that James had severe vomiting and suffered from malnutrition at the beginning of his treatment. James is just now starting to talk, and many of his developmental milestones have been delayed. Because it is not possible to do audiometry on small children, doctors are unable to test for damage to his hearing, so it is not clear if he has suffered hearing loss as a result of treatment. Despite these challenges, James’ grandmother expresses gratitude to the TB office, hospital, and child’s father for James’ care and for allowing her to stay with him at the hospital.

Story Collected by: Pilar Ustero, Global Health Corps, Baylor International Pediatric AIDS Initiative, Baylor College of Medicine; Padma Swamy, Global Child Health Residents, Baylor College of Medicine, Texas Children’s Hospital