Ikram – Tanzania

Ikram and his mother live with his grandmother. His parents are divorced and his father does not provide the family with any support. Ikram’s grandmother supports his mother and eight other family members by selling gravel and stone. She collects larger stones and crushes them by hand using a hammer to produce the gravel. Seven tons of gravel sells for Tanzanian shillings 40,000 (US$26). The family of 10 survives on this meager amount.

In 2009, Ikram’s mother was diagnosed with pulmonary TB (TB of the lungs). She was pregnant at the time, but completed treatment. She gave birth, but the child died of unknown causes two months later. In 2010, when she was again pregnant, this time with Ikram, she was diagnosed with TB for a second time. She completed treatment and was declared cured; a culture was sent for drug susceptibility testing (DST). In the meantime, Ikram was born a healthy baby and immunized with BCG. When Ikram’s mother’s culture results came back, they were positive, but at the time she felt she was in good health.

In May 2011, after counseling and close followup, Ikram’s mother agreed to be referred to the national TB hospital, but finding someone to care for baby Ikram posed a challenge. The district welfare system was weak, and Ikram’s mother was scared she would lose her baby. She decided to keep Ikram with her at the hospital while she received DR-TB treatment. Ikram’s mother was told that her baby was receiving treatment to prevent TB, but in July 2011 Ikram developed a cough and a fever. Ikram, just a baby, was unable to cough up phlegm to test for TB. A gastric lavage (an uncomfortable procedure where a tube is inserted through the nose or mouth) was used to obtain a culture for testing. The culture results and chest X-ray suggested that Ikram had TB. When the DST results showed resistance to isoniazid, rifampicin, and ethambutol, a DR-TB expert panel started Ikram on DR-TB treatment.

In early December 2011, the national TB hospital ran out of second-line drugs. Ikram and his mother stopped treatment and returned home. During his treatment interruption, Ikram began to lose weight, refused to eat, and developed a fever that would not respond to paracetamol (acetaminophen). Not only was Ikram growing weak, but his mother’s condition also began to deteriorate. In late January 2012, Ikram and his mother returned to the hospital and began their DR-TB treatment regimens again.

Once they were thought to no longer be infectious, Ikram and his mother were discharged from the hospital to complete treatment. Ikram’s mother picks his medications up from a facility five kilometers (three miles) from their home. Ikram’s treatment relies on adult formulations, with his doses based on his body weight. His mother must crush the drugs and prepare them with juice to conceal their bitter taste and keep Ikram from spitting them out or vomiting. Ikram is scheduled to complete treatment in February 2013. Ikram is doing well on treatment, but is experiencing slight bending in his lower limbs, a result of treatment with fluoroquinolones. Ikram and his mother are also experiencing stigma. The community knows that Ikram and his mother are being treated for TB, and assume they are coinfected with HIV. As Ikram’s mother says, “my child likes to play with other children in our community, but some parents don’t like that and they chase my child away from theirs.”

Story Collected by: Kibongoto National Tuberculosis Hospital, Tanzania; PATH , Tanzania; Rose Olotu, MD, Technical Officer, TB/HIV Project, PATH , Tanzania; John Minde, District TB and Leprosy Coordinator, National TB and Leprosy Program, Tanzania; Amina Ngombo, District TB/HIV Coordinator, TB/HIV Project, PATH, Tanzania