Nadira’s story: TB and the family tree
Nadira and her two sons, aged three and four, live in a mountain village 40 km from Dushanbe. All three are being treated for tuberculosis (TB), two of them for drug-resistant forms of the disease. After five months in a TB hospital in the capital, under the care of MSF doctors, nurses and counsellors, the family has recently returned home to continue their treatment as outpatients. Nadira’s sister, Gulnara, lives nearby, and she and her two children are suffering from multidrug-resistant tuberculosis (MDR-TB). Gulnara’s seven-year-old daughter died the previous year from a deadly combination of TB and meningitis.
TB has swept through Nadira’s extended family and devastated it. Large, multigenerational families, often living under one roof, are commonplace in Tajikistan. When a child is admitted to the TB hospital near Dushanbe, the counsellor’s first task is to construct a family tree. This helps them work out where the child contracted the disease and who else could be in danger.
For Nadira, it all began when her sister Muhabbat took in an orphan from her husband’s family. The girl had recently returned with her mother from Dushanbe, where they scraped a living working in the city’s market. Soon after they returned, the girl’s mother died of TB and the child herself fell ill.
Over the next few years, four of Nadira’s five siblings caught TB, two of whom – Muhabbat and Shoira – have since died. Her brother had TB but recovered, while two teenage nieces are sick. Altogether 11 family members caught the disease.
There are countless families like Nadira’s in Tajikistan, struggling with a disease around which there is deep-rooted stigma and which is widely believed to be inherited and incurable. MSF’s approach to handling the problem is to meticulously trace the contacts of children who have been diagnosed with TB. Children often serve as the entry points to extended families like that of Nadira, providing a way to untangle the web of kinship ties and reach out to neglected TB sufferers whose illness may have gone unacknowledged and untreated.
Zafar’s story: going home
Zafar, a thin 12-year-old boy with curious eyes, greets us in his room in Machiton hospital’s drug-resistant tuberculosis (DR-TB) department and reaches hastily for a surgical mask. In some of Tajikistan’s TB facilities, infection control measures, such as wearing masks, are not yet implemented – even by healthcare staff – but such behaviour is not tolerated in the MSF-run ward.
Zafar’s brother died of TB, and in January his mother died of multidrug-resistant TB (MDR-TB). Zafar has been treated for TB before, but the treatment was unsuccessful, and three months previously he was re-admitted to hospital with a fever and dry cough, having lost a lot of weight. Unlike many children, who have difficulty coughing up sputum for analysis, Zafar was able to produce enough sputum and was diagnosed with MDR-TB.
Zafar’s treatment is progressing well. He is putting on weight and is tolerating the drugs, although he has experienced some side effects, including joint pain and diarrhoea. While one of his lungs has extensive damage, he is no longer short of breath, and he has dreams of playing sports again.
Asked about his treatment, Zafar becomes animated, counting on his fingers his daily dose: “Three white pills, two yellow pills, one red pill, two brown capsules, one sachet with granules and an injection.”
The following day, the hospital’s medical staff will decide whether Zafar is well enough to return home and receive the rest of his treatment as an outpatient. His grandmother and father are anxious for him to come back with them. If the decision goes their way, MSF will provide all the necessary drugs, while a community nurse, trained by MSF, will visit him daily to administer the pills and injections and monitor his progress.
Zafar’s grandmother agrees that supervision by a nurse is a good idea. “Oh yes, he needs to be followed up all the time,” she says. “He even needs to be reminded to eat – he is fully absorbed by his computer or mobile phone.” “That’s normal,” replies MSF nurse Cindy Gibb. “He is 12 years old, after all.”
On cue, Zafar charges across the room to fetch his mobile phone to show us pictures of his little sister, whom he misses. “I hope soon we’ll be playing football together,” he says.
Patients’ names have been changed.