Dressed in a pink dressing gown, red hat for winter, and Pamiri socks, Sameera, aged 6 and a half, has a round face with almond eyes and a huge smile. She is in the playroom at the moment and, though reluctant, she obediently comes to her room to be examined. I cannot find her brother, Aziz, but a few seconds later, he enters with a frown on his forehead under his ‘hoody’, wearing a thick, ‘mini-michelin’ coat, aged almost 3 years. He does not look happy to see me. The winter of 2011 had just started when I met them in the paediatric TB hospital.
Their mother, aged 32, was diagnosed with TB in May 2010 and was started on treatment. She continued to cough and lose weight despite the treatment and in April 2011, with further molecular tests, a confirmed diagnosis of Drug-Resistant TB was made. She is one of the lucky ones as she lives in the region where the government can treat her for drug-resistant TB. This lucky lottery meant she started treatment for drug-resistant TB in May 2011, soon after her diagnosis was made. Her children were started on treatment for tuberculosis when they presented to the hospital with progressing weight loss and a dry cough.
Given that they lived with their mother, it is very likely that they would have been infected with the same drug-resistant bacilli.
As the children could not produce the sputum and we have no method as yet of stimulating the production of sputum, we never had proof of our suspicions, but given that they were not getting any better on the ‘first line’ treatment, we advocated for starting them on ‘second line’ treatment for suspected drug-resistant TB. They started treatment in the second week of January 2012. It is now March and they have now been institutionalized in the paediatric TB hospital for 9 months.
Administering drugs to an older child is markedly different to that of a younger child and Aziz shows us his distrust. We have to cut the drugs into the right amount (according to their weight, which is not easy) and they taste disgusting. He fights hard and the nurse fights back and the battle leaves neither particularly friendly with the other. The whole experience makes the boy dizzy. Together with five oral drugs, he is also given a daily injection in his bottom, which is beginning to look sore. His aunt rubs honey onto the recent wounds, hopefully preventing infection and promoting wound healing. He is, however, getting better and we hope that he can go back to his family in his village.
The discharge is a whole new game! We have to find out about the family. Questions: could someone in the family, who has not been screened for TB have TB? This could re-infect the children. How are the children going to take the medication – will they have to walk a considerable distance or will the nurse come over? What is the level of understanding of TB like for this family?
The family live up in the mountains about one hour’s drive out of Dushanbe, a trip worthy of at least a morning if not a day, just to see how beautiful the country is. Dushanbe, the city, displays through its youth the new modernity of the western world, with shiny clothes and high-heeled boots and long coats lined with fake or real fur. Not too far from the centre of Dushanbe, there is a different display: more traditional clothes or a pick and mix of more colourful sports tops, handmade hats, holed tracksuit bottoms.
We are lucky today, it seems the winter is ending and the road to the house in Rudaki is a thoroughly enjoyable adventure. I am with the Tajik counselor, my translator and the driver or ‘aka’ (big brother) and we are in a good mood. Our four wheel drive takes us through small villages, and though I generally dislike these polluting monsters that can kill a child, I take exception here given that the road leading up to the house is littered with potholes and cliff edges.
We know the main town but we have absolutely no idea where the village is, so there is a general stop at two junctions to ask directions – personally I would not have asked one of the men with his bushy mono-eyebrow staring at us as though he want to murder us, but ‘aka’ seems to know better and the mono-browed man directs us westward up the hill.
To my surprise, he points us in the right direction and on we go, edging up the cliff peering to the left into the valley. As we go up the steep gradient, the houses are made of mud and there is cow dung keeping them warm. We pass the school, four caravans, perched on the edge of the cliff where the mountain children are fascinating, some with clear blues eyes and wind swept faces. We stare at each other each mesmerized by the other’s difference but I think I win the glaring competition. If it were not for the job, we could have all spent a day here, staring, talking and staring more.
We reach the house, the highest point in the village. It is a rural ‘Havli’, a traditional dwelling compound with a small plot of land for growing vegetables and fruit. I can see two cows grazing behind the ‘havli’ but no vegetables.
The parents meet us at the entrance, the father, who I have met before, and the mother, who I meet for the first time. Both appear quite well. We put our respirators on (masks), take off our shoes and place them facing the door. We are invited inside and into their living room, a rectangular area which also serves as a bedroom. In the corner, I notice a metallic chimney, allowing the heat from the coal to escape into the air. There is an electric heater but electricity is rationed here and i would imagine that in this winter, which has been long, it was cold.
We sit on a ‘kurpacha’, a long sitting mat stuffed with cotton, a flowered pattern on a bluish background. Both are younger than me in chronological age, but the mountain weather and a laborious life means their skin has prematurely toughened. Their home is quiet, and their ‘havli’ has had no children for the last nine months, curious in Tajikistan where the norm might be around five children in each household.
I take the history of the mother but she does not have the exact dates of when her illness started. After some initial frustrations, I realize that the seasons of the year are a more memorable description. It was ‘hot’ when the mother started taking her medication, suggesting summer time and in the end, we worked out that it was May or beginning of June of 2011. The mother tells me that the local nurse who lives 2.5 km away visits her once a week to give her the medications and charges the family one Somoni (Tajik currency) per visit. Our worry is that if the children are to go back home, the nurse would have to visit the family daily, and we are not sure how realistic this would be.
The father’s brother lives within the same compound in a different house with two other children and his wife. They have all been screened for TB and are not considered to have it. The children could go home as they are unlikely to be re-infected by other members of the family.
The father tells me that money is an issue as he does not have a job but will be going to Russia to look for a job.
For me, there is sadness in the village and when I look around the village later, I notice that there are not many men in the village. Many are in Russia because families are unable to sustain themselves and so look outside the country to bring back money. This breaks the families up for long periods of time, in sometimes cold and very hard conditions. This collective unity, which is so interdependent, starts to become fragmented, seems to me a loss for an already difficult life. Disease seems also to have broken this interdependent family network: The mother’s side seems to be the epicenter of the disease. The mother has four sisters, one of whom has drug-resistant TB and is on treatment. Two of her sisters died in 2008 of TB. Between the five sisters, they have fifteen children but two have died of TB.
The journey back to the city takes us through fields with the new spring flowers, a new hope after this winter. We get out of the car and climb up the hill to pick the yellow flowers for the women of the team in time for International Women’s Day. Later, we stop on the side of the road to buy some fresh pomegranates. I struggle to understand this world of TB and in times of utter confusion with feelings of helplessness, I love these moments; they remind me of young days in Kenya, when the bargaining over a fruit, creates a moment of human interaction that always brings a smile. (Though I still think she overcharged me for the 1kg that I bought!)