Time and institutions

Time flies and on occasion the need to react feels impulsive. The project suddenly requires quick thinking and meetings to discuss the unsettling news from the Pamir region. I refrain from describing what we hear from reports in case we cause damage to the people we are trying to help. I hear of an epidemic of leishmaniasis (Kala Azar or ‘’black sickness’’) in Tajikistan and a need for MSF to provide assistance. Our small paediatric TB project, contained in the chaos of what we have now defined as ’normal’, seems a little anxious.

Drawing our eyes back to the project, we learn of a 12-year-old girl needing treatment for drug-resistant TB. She lives in the north of the country, 400km from the capital city. This area has no drugs to treat anyone with drug-resistant TB. We agree, in full MSF spirit, to go and help the Ministry of Health doctor support this patient.

We arrive late in the evening, our translator preoccupied with the disturbances in the Pamir. She reacts to the phone with a nervous tick hoping for any news, though her professionalism is unashamedly contained regarding the task ahead. I joke to lift the spirit. My Tajik is now at a level where I can flirt and argue which I think will suffice but my modesty is very often challenged – I try and be poetic in Tajik but quite frankly it never works !!

I had a Tajik lesson the other day. What I wanted to say is ‘’I like the summer season because I like to sit under the tree, meditate and listen (gush kardan) to the beautiful birds’’. Instead, I say, ‘’I like the summer season because I can sit under the tree, meditate and fart (guz kardan) to the beautiful birds’’. There are always little moments of joy in the hardships of learning a foreign language. The air is fresh again and an escape from Dushanbe and the situation in the Pamir seems to come at an ideal time.

Stacking hay © Kartik Chandaria

The next day, we head towards the hospital. I meet the doctor looking after the patients in the TB hospital, her wise expression enhanced by her glasses perching on her nose. We sit on the couch and the introductions are formalized in our usual set manner, a session that requires the added time of translation from English to Russian and visa versa.

For me it is interesting to see how the girl we are here to see will react to us. I meet a girl in green fluorescent slippers and a yellow dress with flowers, a style not uncommon in the summer of Tajikistan. The left side of her neck is covered with a green cloth. She looks scared, her posture strict and upright with her uncle nodding silently with desperate appreciation. I don’t like his gesture of desperation, this helplessness, and this subservience. I calm my thoughts and I ask the girl her name.

This is Zulfia’s* story. TB pervades her family institution, the roots emerging from her grandparents, both of whom died from the disease. Her father works and lives in Russia, bringing money to the large household. Her parents are divorced and she lives with 15 other members of the extended family. She was five years old when she was first diagnosed with TB of the glands in her neck. She did not take her full course of medication – a common and understandable story – she felt better and stopped taking the drugs. She was labeled a ‘’defaulter’’ and re-started medications when her symptoms returned.

She has been institutionalised in the hospital for about five years now, with repeated efforts of the same impotent medication. Her history is marked, not by the lack of exact dates of previous treatment available, but written on her neck. She has seven tight scars where she has had surgery to remove the large glands, from the right to the left and up towards her ear. The last one is covered.

She trusts us a little more now and we are able to joke in Tajik, though I decide not to recite the faux-part that I made with attempting to write poetically. I look under the cloth and an open hole with an open tract is revealed. It is quite amazing that this disease has been contained in this area and not spread to the rest of her body. This disease has no rules and as always with life, it is dependent on those multiple factors that we can never quite understand. Perhaps, one of those factors is resilience.

She is loved in the hospital by the doctor, the little Uzbek boy that brings her water, by the cleaner who she helps and the hospital school that she attends daily. Her reactions are thankfully so normal in so many ways, she cries like a little girl with the injection of the needle in her bottom, a fate she will have to accept over the next six-to-eight months. She will take seven medications in total per day for six months and then six after that for another probable 12 months at least. I am not sure how much she understands of this. She will remain in hospital because there is no one to take care of her at home. I wonder if time stands a still for her, the normality of her community substituted by a hospital. I wonder if she trusts our persuasive nature, that she will be cured if she takes these ‘’new’’ medicines.

Zulfia will enter adolescence, and will face her disease and her life in the hospital, and if she recovers from her illness, her life will largely be confined to the duties she will respectfully fulfill, but I suspect her schooling days will be limited. If she passes the 18-20 month regimen and is cured of her disease, I wonder if she will remember her time here or will those surgical scars be the only shadows of her past.

We leave the hospital and I feel positive for Zulfia’s future.

She runs behind with her friend hoping for that one last photo. I must remember to give it to her when we visit her again.


*Names have been changed to preserve anonymity

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Power struggles

Baktyor is a four-year-old boy with two black front teeth and huge eyelashes who taunts his brother. He has no idea of the tensions he brings to the department while he plays with the oversized Chinese toy truck. His story is one that confuses the mind of an expatriate doctor trapped between chaotic decisions and political moves, which can leave the patient and science lost in the process.

TB circumscribes Baktyor like an incestuous habit. His mother is on treatment for drug-resistant TB. His maternal aunt is on treatment for drug-resistant TB. His maternal cousins are on treatment for drug-resistant TB. Three of his maternal cousins died from TB. Two of his maternal aunts died of TB, despite treatment, suggesting that this TB might have been drug-resistant also. Baktyor is certainly at high risk of TB but he presents with no symptoms or signs suggestive of classical TB.

Disease may not manifest at first sight and there lies truth in time and patience. Over the next month and a half, he does not really gain weight and he finally reveals the previously occult disease. His X-ray shows white shadows (infection) in his right lung. He does indeed have TB and given how close he is physically to his mother, he is likely to have drug-resistant TB.

Now we have evidence, we need to start him on treatment for drug-resistant TB. I explain to Baktyor’s father the nature of the disease but he is apprehensive about what I say, I can sense it but I cannot understand why. I ask one of the counselors who works with MSF about this.

The father has heard that foreigners come here and experiment on people. Rafiq, the first child we treated with drugs died and the mother reported to others that the drugs we gave Rafiq killed him. This leaves me deeply upset. As a doctor, I have to justify that what we do is ethically and morally right for the patient. All I know is that Rafiq was not an experiment. Who are these foreigners that the father talks about? Is it us? Is it others? Is it the past when the civil war brought foreigners to the country?

Life is never straightforward for very poor families. There is some worrying politics in this system that makes decision making into a schizophrenic frenzy. The hospital wants the child out because he is considered a threat to the other children. I talk to his father. His face is wrinkled, his hands heavy and sliced with small cuts, an appearance of labour and lack of education. Added to his status in society, he does not have a job. He lives in a village where the nearest clinic is 7 km away. There is no public transport up to his house; the ragged road does not permit this. He, like so many others whose families have been crippled with TB, is left alone in his house, with no work. There is no way to give Baktyor the medications safely. I beg the authorities to allow Baktyor to stay but my impotence once again is apparent as I fail to convince the authority to let him stay. He is discharged on the same day.

Power is an interesting phenomenon. My loss of power is someone else gain and we fluctuate between the two. While this insanity continues, Baktyor stays the first night with his father and his paternal uncle. I meet his father the next day. Baktyor tried to run away the night before uncomfortable in his new surroundings. I report to higher figures within MSF and the situation is escalated. There is a meeting and voices are raised “If this were your child, you would not allow this to happen”.

There is so much politics within the Ministry of Health and each has his own agenda. In this system, to give in to someone else’s power is sign of weakness and the one authority that has dictated the whole situation wants something out of this. The problem is that we have nothing to offer immediately. The authority gives us permission to keep the child in the hospital for two weeks while MSF provides the renovations for a ward to house children with drug-resistant TB. Baktyor is permitted to stay and the balance of power has equalized a little better. I do not know what will happen after two weeks are over and pray that the ward will be renovated in time.

By closing their eyes to children who were likely to be drug-resistant TB, the medical system allowed poor medication to be given. Patients and their families have no trust in doctors who use their power to suppress questions, especially to those individuals who have little education. MSF with our new ideas are certainly not the saviours that we like to think we are and trust needs to build. This takes time and emotions will continue to dominate in the struggle to do the right thing.

It is not an easy struggle but at least Baktyor is lost in his innocence.

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Village TB

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?

MountainsThe 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!)

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Rafiq’s end

Rafiq.
Time of death 8.30.
Cause of death: Sudden deterioration.

We were in a meeting when Rafiq expired at 8.30 in the morning. His strength had faded away and he eventually left. The news is shocking and leaves no time for contemplation. In the few moments one has in these situations I feel my head exploding in a futile effort to find answers. I had seen Rafiq two days ago and my colleague reviewed him again yesterday. He was sick but stable. He had played with the rubik’s cube that was in front of him. We had adjusted his medication to accommodate his current status.

We leave the office to go to the hospital where the body is about to be taken away.

While those that surround her outside the main entrance are silent with their head respectfully bowed, Rafiq’s mother’s expression is not reserved and she cries, or rather wails, her weight supported by her female relatives. I place my hand over her head in an attempt to soothe her sorrow. In her grief, which I imagine is worse than my guilt, she takes time to thank MSF for all our support. He is finally at peace. His mother’s words as she leaves in the car “it was my son’s destiny”. She stayed in the hospital for 13 months.

The room is disinfected, his infected body lying in the flowery, red blanket that covers him. The nurses and general population of the hospital are ordered to continue with their work, perhaps a sensible option given that emotions need to be contained and others need not be scared.

Every action has a reaction and in the case of Rafiq, two questions will always remain; did we do the right thing by treating such a sick child or was palliative care a better option? Could we have pursued this option more carefully? Did we cause more harm than good for Rafiq? He will not have an autopsy which means that we will never find out the exact cause of his death. I am not sure if, as health professionals, we can ever be certain of anything. We use our studies to guide us, looking at the evidence presented before us, but there is never certainty. While I knew him, he had blood tests every week, he had fluid drained out of his sickened belly every two weeks, and we gave him a total of 9 drugs every day. His older brother sent money to the family every week from Russia and the mother never wanted our help in paying for her son’s treatment. Her determination to help her child was not only admirable but of unreserved selflessness. My problem is that I think I had a hunch that he would not get better, and though I was honest about this to his mother perhaps I should have been more direct with her. She once asked whether she could take Rafik home, but we had suggested that if he went home he would surely die. He died anyway.

Perhaps, through Rafiq, we learnt about how illness can be treated here in Tajikistan. We battled with the authorities to start his treatment. After his treatment started, I realized that this was not a place to treat children who are sick, and it worried me. He was confined to what is essentially a ‘sanatorium’ where he remained as a sufferer of disease in exile for 1 year of his life and now he will be called a ‘treatment failure’ for statistical purposes. What he allowed us to do was to help create a system where better monitoring took place, like you would do in any hospital setting. With the help of a bright young MSF nurse I saw a change in the local nurses, in their motivation to improve the care of their patients. In a culture in which the nurses are generally subordinate to doctors, there is a sense that a little bit of knowledge was given back to the gatekeepers of the child.

The legacy Rafiq leaves is one that makes bitter taste. In Tajikistan, there is little room for discussion of diagnoses; uncertainty in diagnoses appears to be a sign of professional weakness. I recently attended a consilium for another patient and there was a sense that the trust the consilium members had for MSF had diminished, the sense that we were wrong and they were right. This is a situation I have tried to avoid in this kind of work – the language of “they and us”.

I never saw the family again after his death though I have the mother’s telephone number and perhaps, when my own guilt is eased, I will call her. For a few days, the name Rafiq continued to slip out, but we are distracted by the ‘new’ patient, the ‘interesting’ patient, and slowly Rafiq has faded away, though in moments of silence, he appears with his mother, shy and teaching me how to count to 20 in Tajik.

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Mystical men and Christmas in Dushanbe

I sit silent in the darkness of our street without electricity, six candles burning on the breakfast table and a copy of the book I am reading “Young Stalin” by Simon Sebag Montefiore, in a world far from the conventions and hedonism of Christmas. I like this peaceful moment in my five layers of multi-colored clothing, two pairs of socks, hat and scarf (the only exposed areas are my eyes, fingertips and the tip of my nose). It is a week before Christmas, the air is still and misty, and I think, though I may be wrong, that snow is on its way.

Curious events have occurred over the last two weeks, leaving emotions that are difficult to contain and even more difficult to express. On Friday, 9th December, the concilium members decided that Rafiq should be given a chance of treatment for drug-resistant TB, and, if after 3 weeks he did not improve, we would re-consider the diagnosis. An unexpected decision and one that was not easy for any of the panel members. Given the potential consequences, this was a brave decision. Rafiq is a sick child and one has to justify every action, because any action could be the one that is fatal to him. His mother has withered from caring for her son who is still slowly deteriorating after 11 months in hospital. She remains faithful to the God she knows, praying relentlessly in Rafiq’s room, a reflection of her love for her son and her duty to her faith, meshed in an unquestioned manner. In this medicine of uncertainties, both the doctor and I explain to Rafiq’s mother the realities as we see them: the diagnosis is not certain but given what we know of the history and ruling out as many differentials as possible (we are still waiting on one more test), this is likely to be drug- resistant TB. If he does not receive treatment, he will not improve on his own (I cannot use any more transparent words, but she knows what we mean). If he receives what we hope is the appropriate treatment, he may survive or he may not tolerate the toxicity of the drugs. Her response – “there is no other option.” This was the informed consent that Rafiq’s mother signed.

On Saturday, we started Rafiq on a cocktail of five medicines, a combination that will hopefully kill the TB bacilli. He looked terrible the day we started him on treatment, his jugular throbbing at the neck, the machinery of his heart straining with resistance and ribs exposed with every inhaled breath he took. His right lung full of fluid pushes down on his liver and the fluid in his belly pushes against the diaphragm and how his tiny frame copes with this is quite phenomenal. I don’t think he fully understands the treatment and I have no idea what he makes of our tall worried looks but when we tell him we will start some new medicine, he looks at us with distrust, his head flexed into his pounding chest.

I speak about Rafiq to Junie, one of the new members of the team, a slightly nutty but brilliant woman, who the kids adore. I hope she can explain to Rafiq a little about TB and why it needs to be treated. The kids call her “mualima” meaning teacher in Tajik. She writes a little story to explain to the younger ones what TB means. Our tall office assistant or “aka” (big brother to the kids) narrates the story to Rafiq and the others:

TB was a furry and naughty little germ. One day TB played a trick and made himself so tiny that no one could see him. He thought it was fun to hide. The wind was blowing hard and TB decided to catch the wind as it was blowing by. It was fun to fly up high and then swoop down low on the wind. TB flew very close to some children who were playing near-by. One of the children took a deep breath in, and TB quickly popped into his mouth. TB started to make mischief inside his body, making him feel very hot, then making him cough, then making him feel very tired.

His family was very sad to see him so hot and tired and coughing. They decided to take him to the doctor.

When the doctor saw him hot and coughing and tired, the doctor said “I think that TB has paid him a visit. I know how to make that naughty TB go away”. The doctor gave him some medicine and he swallowed it down. When the medicine was inside his tummy, it started to fill up all the spaces inside him with its good stuff. The medicine made so much good stuff that it took up all the room inside him. TB was squashed by the good stuff and felt so uncomfortable that he decided it was time to leave.

When TB was gone he started to feel better, there was no more coughing or feeling hot or tired. His family was so happy that he was better, that they held a party to celebrate.

The children here love story telling and even the most mischievous (there is one girl, aged three, who likes testing my knuckle reflexes with a wooden car) are attentive. It is strange that in a TB institute, the message the children receive about TB is that it is caught by poor hand washing and a story like this provokes a healthy discussion.

It has been a week since Rafiq started treatment. The side effects from the drugs leave him weak and feeling sick, though the sickness is transient. His body remains unstable but he sleeps better at night. His mother has spent thousands of Somoni over the last 11 months, so MSF now pays for all his investigations and treatment. His body needs to re-build itself and we buy him the local ingredients so that his mother can make him food he enjoys. In a hospital where there are other children who do not as yet get this privilege, it feels unjust to exclude them, but today I have put my personal dilemmas about the role of an NGO aside, because there is no other option for Rafiq.

snow-in-tajikistanToday it started to snow! Though, Rafiq takes up most of my thoughts, an evolving obsession I need to learn to control, the snow is a beautiful distraction. I walked to work and the slim students defy the snow, fashionably dressed in their Beatles outfits, with a carpet of snow dusted lightly on the heads. There is a sense of magic in the air – there is no Santa (there is no obesity epidemic in tajikistan!), but instead old men clustered together to keep themselves warm in their fur hats or turbans or little black caps, and long velvet blue tunics. I walk past the bread shop where a group of them play cards, a daily ritual not disrupted by the cold. Right then, in the morning mist and rising sun, the blue tunics, called ‘Joma’ come alive. The old men, emerging from the mist, with their snowy white beards, look like magicians, as though they will be taken by the wind and turned to snow dust and I love it – a mystical illusion rather preferred to a glossy one.

So this will be Christmas, away from mum’s freshly cooked roti and indian curry. But our team is a cohesive one, one that resembles the family and loved one that I miss so dearly. With my last thoughts about Rafiq, I pray to all the Gods and mystical beings, that he starts to feel better. If anyone deserves a break this Christmas, it is those kids away from their families by no fault of their own, other than to have been exposed to a disease that is polarized to the poor.

The hospital is having a party on 26th January and there won’t be any old man, but an overweight Santa played by our resident logistician, the great Tamas. It is exciting for the kids who I imagine will be happy for any distraction to their institutional lifestyle. The snow is now very thick, and it is beautiful, a sense of peace in this chaotic world. It is hard to hold back my not so dulcet tones singing in true NGO worker John Lenon’s “War is Over” as i crumble my snow boots into the dense snow. I think even I have accepted that Christmas is here and actually, it is not so bad!

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Case Report (I have called him Rafiq)

The room fits three small beds placed in a U-shape and he shares it with his mother and another boy with tuberculosis. I am just in time to see him; his mother has just rolled the carpet suggesting the Friday prayer has ended. The wind is unusually rough today and the closed windows are stained with the prints of the fallen autumn leaves. The air is still and inescapable, ideal for infection and a threat to all those who enter.

Rafiq, aged seven, sits quietly, supported by a pillow against the wall. With his legs stretched out, he eats a fresh pomegranate. He has not eaten for three days so this little step is one that is worth holding on to. The colour of his skin is an unhealthy creamy white, and though only a child, he sits like an old man, his belly hanging out, full of fluid that has seeped into the normally empty abdominal spaces. His arms are so thin, his bones stick out like two small twigs ready to snap free. He has not slept for a week and the little bags under his eyes are heavy with burden. I ask him if I can examine him and he shifts along the edge of the bed like the old beggar men of India without legs, who move on wheeled platforms. Rafiq´s closed fists mark the bed as he uses them to shunt along. The effort is enormous, and Rafiq struggles to draw breath. His breathing is so laboured, the air is sucked through his ribs to generate the required pressure for oxygen to be delivered to his lungs.

This is his story.

In October 2010, when he was just six, his mother noticed the onset of laboured breathing, a non-productive cough and a belly that was getting bigger. He comes from the region of Khatlon, an impoverished area that breeds tuberculosis, and more specifically, as new data shows, drug resistant tuberculosis. His family, including two sisters aged 19 and 10, live in poverty, in a brick house with. The little money they have comes from the father who works in the local bazaar and from Rafiq’s older brother in Russia; sufficient money to buy food but not enough for electricity.

When the breathing became worse, his mother brought him to the local polyclinic where he was treated with antibiotics for a presumed lung infection, but as expected, they did not work. His mother returned for a medical review and Rafiq was thought to have tuberculosis. His chest x-ray at the time showed that his right lung was filled with fluid, and he was eventually diagnosed as having TB. The results of his sputum never showed the TB bacilli. In January 2011, he was transferred to the only TB-specific paediatric hospital in Tajikistan, here in Dushanbe. He was placed on a cocktail of medications on a known WHO (World Health Organization) standardised regimen that included two of the most potent drugs known to treat tuberculosis: Isoniazid and Rifampicin. The doctors treated him for two months and when his symptoms improved, he was discharged back home where he could continue with the treatment.

I see Rafiq’s mother caring for him everyday and she seems devoted to him. She tells me that despite daily efforts to give him the medication, his symptoms returned and Rafiq did not respond to his treatment. In April of 2011, his mother brought Rafiq back to the hospital and a repeat CXR showed that the fluid in his lungs had returned. His treatment then continued in hospital and again, the results of his sputum did not show the TB bacilli. He was changed to a different regimen that included the original drugs and Streptomycin, which is currently thought to be ineffective to treat TB. Rafiq is a complicated boy and the doctors have tried to ensure that they are sure of the diagnosis. He is now 11 months into his treatment and he continues to experience a worsening of his symptoms. He was referred for assessments by different specialists who conducted their own investigations, each at a cost that the family could not afford.

I saw Rafiq at the end of October 2011, when we first thought that he might have drug resistant TB. His mother showed me a blurred photograph of Rafiq before his symptoms started, a plump, healthy child, unrecognizable from his current skeletal, haunting, pale, pathetic state. The fight for his survival sickens me with grief, of political forces that govern his fate, and the attitude towards this disease in children gives me an insight of why this child suffers, and makes me nervous and angry.

The discussions around this child take place within the conciliums that decide whether he has drug resistant TB or not. I reflect on the concilium I attended when I first started (see post Reflections of the concilium), when Rafiq was not considered worthy of discussion because there was no microbiological confirmation of the disease. His sputum was collected by a hospital staff member who prides himself in being able to collect sputum specimens in un-orthodox ways (he puts some water in a syringe and injects it down the back of the throat to induce an ‘irritability’, as he describes it, of the lungs – not only is this dangerous and may cause a child to stop breathing, but the likely result is probably not that of sputum and more likely the mucous that sits in the mouth, and therefore unsuitable for diagnostic tests). The research suggests that even if sputum had been collected, or fluid from his lungs analysed, the chances of positive findings are less than 20%. This was never taken into consideration at the concilium.

We fought hard for him to be presented again, but unfortunately the conciliums have been cancelled four times. When I ask the professor of the paediatric hospital to consider him for drug resistant TB, she agrees with the diagnosis but adds there is no hope for this child. She continues with, “it is the mother’s fault that he has this diagnosis – she did not give him the medications when Rafiq was sent back home.” She has assessed the child twice in the last 11 months but is keen to make a point that this is not the fault of the doctors, nor the system in place. I explain that his mother is a highly motivated woman who is a nurse and cares for Rafiq daily in the hospital. It is possible that he was infected by another member of the community, given that he comes from an area with high prevalence of drug-resistant TB, but once again, the motion is dismissed.

MSF cannot treat this child as yet without the full agreement of the authorities, who in my opinion, do not know this child, and furthermore do not have an understanding of TB in children. This is becoming a chess set battle where Rafiq is the pawn in the middle slowly breaking down the basic cellular components of his body. His mother told me that she will take him home where he can be treated with herbs. She cries and wipes the dirty tears with her pink headscarf explaining that “Rafiq is not an experiment. Why do the nurses and doctors not care when he suffers like this”.

The truth is difficult to dissect, but my impression is that this paediatric hospital is not a hospital, but rather like a nursing home or a sanatoria, where children who are relatively well get treated for TB so that they are segregated from the rest of society members, where if the beds were not occupied, the hospital could close down, and where little or no monitoring of children takes place.

So when a child, like Rafiq presents as a complicated case, there is a sense that he is a “hopeless” case, not worth the fight. But the image of the hospital cannot be tarnished by admitting poor monitoring and treatment, and therefore to the uneducated families who do not ask many questions, they will remain accused as guilty of their inability to protect their child. It is a horrible situation which questions my role as a doctor here. How do we fight for these children to get the right treatment? If I see poor medical practice, that cannot be solved by respectful discussion, who am I fighting for: the credibility that MSF can stay in Tajikistan by not upsetting the authorities or am I really fighting for the lives of these vulnerable individuals? How does one change the culture of blame on a family to one that takes a collective responsibility over a child’s fate?

I go back to Rafiq the next day. His mother tells me that she thought he might not wake up from his sleep. He defies my own faith in his resilience and today, he is munching away at fried chicken.

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Buzkashi

Buzkashi: buz = goat / kashidan = to pull – not for vegetarians!

It’s the day after one of the guards, Rasoul celebrated his birthday with several cows, delivered in the guise of Shashliks (skewed meat) and Russian Vodka, and I am not feeling so good!

The celebrations started tamely. The vodka sitting like a benign water bottle on the side table, I assumed, was for ‘the westerners’. Murodbek, one of the other guards, changed his clothes for the day into the white uniform of an experienced chef and showcased his genius by preparing a meal for all the staff in MSF. It was really a welcome break from the 4 weeks of hospital work where my emotions peaked and troughed like the Russian Mountains.

Anyway, back to the vodka. Rasoul asks me if I want a vodka and in jest I respond ‘’only if you have one’’, a response that I was sure would be ‘’no’’, given that we are in a relatively conservative country. Of course, my preconceptions were wrong; an empty glass was given to me and I was ‘encouraged’ to propose a toast. And there began the 2 hour journey into a different plane and the spirits were awakened and many lost into another plane. From friendship, to love, to memories, to further repetitions of the same for reasons of memory loss passed smoothly between the team, well at least the men in the team. The truth is, despite the difficulties that we face in this project with the mindless authority, the Tajiks we work with and the Tajiks that engage in our everyday lives, are warm, and the friendship and love and brotherhood that is developing is a natural one. I realize what I really like about working with MSF here in Tajikistan; that each person has a respected role but we are a cohesive ‘whole’ when it comes to this project. In the midst of the drinking, I am convinced to go and see a national sport the next day, called Buzkashi, by the logisticians, Tamas and Shavkat. I had never heard of it but being the new man that I had become after several vodkas, I agreed (as a man should in these situations – the vodka had clearly posted delusions of grandiose in my head). I had no idea about the venue, nor the time, but it was something to do with horses and a goat at around midday in a field outside Dushanbe. I was excited.

The journey from Dushanbe south to Khatlon leaves behind the tall buildings to give way to clear blue skies, green, carpeted fields and donkeys contemplating the world. I am with Ulogbek, the driver, Tamas, our trusted Dutch logistician, and two medical advisors, Sebastian (a modern day Che Gevara look alike) and Philipp who are visiting for a few days. An hour later, we arrive at the destination and park the car high up on the hills overlooking the valley. In the distance, men on horses pull on the reigns as a horn is trumpeted. The game is about to begin.

We walk to the top of the hill where the men are sitting. There are men and horses everywhere from Iran, Afghanistan and Tajikistan and thousands of people have come to watch the game. I ask Ulogbek what this is all about and patiently he explains ‘’there is a goat that is dragged from one end of the field to the other (about 1.5km) and back again to the final line. Each man, on horse, plays against each other and every time the goat is brought back, he wins a point. The man on a horse who has the most number of points at the end of the 45 minute game will get a prize (money or a car for example)’’. With two hundred men on horses and only one goat, I suspect there is likely to be danger!

The scene is like a film set, green fields with mountains silhouetted in the background. Some men wear Tajik tunics, some with long green warm tunics called ‘Joma’, black gumboots, and heads protected by traditional white cloth wrapped like a turban. Others wear a more modern version with Russian pilot hats and sporting jackets with stripes on the arms and logos of various countries on their backs. The men sit on wooden saddles balanced to allow an almost 90 degree bend to pick up the goat. There is a surge of horses towards us and we move higher up the hill. It is like a film set, but the protagonists are real, barbaric and extremely skillful. The men ride the horses at full speed and hit each other with sticks on the head, the leg or quite frankly anywhere exposed, to bend down and grab the goat in mid-gallop. The mass of horses follow until the ‘goal’ has been reached. It is so thick and I cannot see the goat.

Later, I ask one of the Tajik logisticians, an experienced spectator, how this sport originated. Shavat is a man of knowledge and given that he has helped translate a film about this sport, I trust his words. (I will tentatively try to use his words here to describe the origins but I cannot express his excitement when he talks about it and wish that he could write them himself) “When Ghengis Khan and his Mongols made their way through Central Asia, they brought with them shepherds and goats. In the middle of the night (here, he lowers his voice), the wolves would try and attack them, so the shepherds would mount the horses and grab the back of the wolves (he raises his voice) and strike the wolf against a rock to kill it. The shepherds enjoyed this and it became a game.” And that is how it all started!

The spectators are mainly Uzbeks and Tajiks but quite different looking from the Iranian looking people of Dushanbe. The influence of Ghengis Khan in both the sport and the visage of the people, with the Mongolian features, is striking. I also notice that many have flat occiputs (a flat back of the head) and my medical advisor tells me that babies are laid on a wooden decorated cradle for the first few months of life to look beautiful, although perhaps the people here were more advanced in their thinking as we know now in the western literature that babies left lying on their back are less likely to die of cot death.

The game is over and we head back to Dushanbe. With a picnic of Indian food, friends and family (only men allowed though), I could watch it again. The freedom of space, the movement of horses and the shaded mountains is not a bad setting for a man, even for a vegetarian! As for the goat, well, I think he will have a better life next time.

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Weather and language lessons

The potholes that litter the side alleys are bursting at the edges, full of brown water, so it seems easier to step on the recent bed of fallen autumn leaves at the side that leads from the house to the office. The cars veer wide of the large potholes, occasionally jolting into one. The weather has changed and it has rained for the last two weeks, with the temperature dropping to single numbers. The atmosphere is grey and the colour has slowly disappeared from the city, leaving even the grandiose presidential palace looking insignificant. Irony is that for the last 24 hours, while the roads are almost flooded, our water supply was cut off. When it came back on, the electricity switched off, the fuel which heats up the water, and so basically nature has beaten me and the only place to stay warm is the office!

With little to do outside, there is an opportunity to learn the ancient language of Tajik so I may eventually get to know this world and speak to the kids in the hospital. The letters are so foreign to me, that they hurt my eyes and being a slightly impulsive student, the frustration of the poor understanding is even more evident. My teacher is a young Tajik lady who cannot understand why I cannot pronounce the words properly. The language sounds like a mix of urdu and mandarin to me, the latter bringing a smile to my attempt at Tajik. The alphabet is the beautiful Cyrillic alphabet which has shape and music to every letter. Well not quite, there are some sounds which are guttural and I have to practice them in front of the mirror to see where the tongue lies! They say the language is poetic and there is a lot of folktale and theatre here but until I have a basic foundation, the nuances of the language are just a dream.

The guards help me a lot here in the office. One guard is Rasul and he is a tall man worthy of a Tajik medal. He offers me bread, an offering that one must never refuse, and patiently teaches me. I like his style: he smile and teaches me with lots of repetitions. The basic greetings are to the gods and health, generally followed by a hand to the heart and a bow of the head (I love it). Any further conversation is a mix between Hindi, Spanish and English in the hope that one of the languages associates with Tajik, and with an innocent smile, I start listening to the words. They slowly start to spring to life, a joy which is difficult to suppress, because slowly, things start to make sense.

The kids in the hospital giggle at any attempt to speak Tajik, so I decide to hold an English class, as a pay-back for giggling. I enter the school/dining room. The low tables are coloured red and the small hand-made wooden seats are the only objects that suggest this might be a small school. The children here are not considered to be infectious to others and are generally quite well.

There are four children who are infectious. They are housed in a separate area, and fall victim to other consequences of this consumptive illness, the separation from normality, from play and learning and helping the others. The two 15 years old girls and two 13 year old girls do not receive any education and spend the cold days in the rooms, mostly sleeping. It is hard to imagine their boredom, but they never complain. This worries me – why are they so accepting of their fate? Is this cultural or the role of poverty that determines the freedom to express one’s wishes? Do the children and families receive an informed view of their health and if not, does it matter in this culture? Or should culture be ignored and should MSF serve to enhance the view of the child more? The problem, I feel, is that a western construct of childhood is different to that of another culture and without a good understanding of what Tajik culture is, it is very difficult for me to implement our slightly two dimensional standardized view of how to serve the interests of these children.

I speak to the teacher, a lady of mature years with laughter lines running down her eyes. She has worked as a teacher for 40 years and in the hospital for 4 years. The children love her classes because they can practice their singing and although as yet I have not heard their songs, I look forward to listening to their dulcet (and not so dulcet) tones. There is nothing to draw or write with and the white walls speak of hygiene, but not of stories or messy hand prints and colour. The children, however, are noisy and eager to learn so I ask the teacher if I could teach them the body parts (I feel as a doctor, I know something about body parts). The lesson begins: there is the creek of the small wooden chairs unceremoniously dragged across the floor in two lines and the noise makes me shiver. There are more children than chairs, so those who are able to speak generally have the better seat (the under 2′s group themselves on the side and the boys in the back row). I sing ’’head, shoulders, knees and toes’’ and there are glazed expression. I repeat ‘’head, shoulders, knees and toes, knees and toes, and eyes and ears and mouth and nose, head, shoulders, knees and toes, knees and toes’’. There is movement, but the expression is still of confusion. I repeat the song with accompanying gestures remembering that language is easier to learn through gesture and here we go, we are getting somewhere, and once I get over the image of me looking like a monkey as I place my hand neatly cupped over my head, there is an imitated response. The girls are generally the better at the words but the boys don’t do too bad considering the horror that they are subjected to. We continue for another 10 minutes before the lesson terminates and lunch is served

I learn through experience not to promise too much to children because the disappointment they show is quite palpable and makes you feel quite sick. Still, I’m sure a few notebooks and a blackboard could be managed, without too much problem and I promise at least to myself that we can buy this. It is the kids in the positive ward that worry me more.

The damp has settled in the bones but after the two weeks, the sun came out for two days. A group of children make a fire out of the nearby fallen twigs and the groups of men and groups of women wander in the streets to celebrate the holiday. Last night, it all changed and the wind returned to Dushanbe. By the morning, there was fresh snow and now there is a foot of thick snow. Earlier than expected, the women are still in their high heel stilettos – a scenario that is always amusing in the slippery surface. I hear a boy shout “mama”, when his poor mother slips on the damp snow. I turn around and she smiles hopefully realizing the impracticality that she puts herself in. The snow was dense and lasted for two days before the sun emerged and melted it rapidly, making it fall on unsuspecting foreigners. The pot holes are full again of dirty water. The leaves had fallen prematurely and the hospital grounds have a thick carpet of unwithered leaves, that should have fallen and become crisp from autumn. I returned to the hospital, where the day is beautiful and most of the kids are out. The older ones are at work clearing the fallen leaves in the tarpaulene left over from construction work. And they look healthy today, not cramped away inside the hospital. It also means that I do not have to wear the respirator (mask) as the natural ventilation will rapidly take away the cough particles. The children are relaxed , those that are deemed to be not infectious, but once again, the kids in the positive ward are left to watch what appears to be a normal day outside from within.

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Reflections of concillium

The concillium is an event attended by various senior figures of the TB world here in Dushanbe. The venue, the TB dispensary, seems the perfect placefor informed discussion and teaching. This is my second week here in Tajikstan and we have three patients to present.

Bobojon, the dutiful doctor preps the patients beforehand (as well as they can be) and will present at the event. Two of the patients are sick in the hospital and therefore, consideration of treatment needs to be discussed as soon as possible. We have taken into consideration that the children may need treatment but we do not have the drugs until end of November 2011. MSF have agreed to buy the relevant investigations, the food and the drugs for these three patients from MoH before our own supply arrives. We think that the children are sick, and by considering treatment for the children, we can help with their health and decrease transmission.

The concillium is attended by the MDR coordinator for the region, a friendly figure, with whom I have had a lengthy discussion about the patients. My close allies are my trusted translator, observing every change in body language or tone of discussion, and the office assistant discretely positioned out of sight. I do not recognize the other three bodies in the room, but they seem to be of authority. With the greetings of assalom aleykum and a gentle placement of the right hand on the chest, I am offered tea. The forum has started; the initial calm a false shadow of what is to become a difficult event.

The first patient, a 13 year old girl, has multidrug-resistant tuberculosis (MDR TB), based on her diagnostic investigations. This girl was diagnosed with TB in March 2010. She has been under conventional treatment for a long time but the bugs have become resistant. This result of the resistance was known back in May 2011 but there were no beds for admission, an explanation for which I have not yet heard. She remains in her community until we can locate her and bring her in for an assessment. The concillium are in agreement that this is MDR TB.

The next patient presents a challenge. I notice that the conventional manner of the presentation by the doctor starts with name, age, region and then straight to result of HAIN, a rapid screen for resistance to drugs. The decision is made that we cannot discuss the patient until the HAIN result is known. I speak because there seems to be an injustice to the patient, who I and the hospital doctor believe is sick and infectious. We are presented with no narrative for this patient, and if there was a fly on the wall, it might be mistaken into thinking that the patient’s name is actually HAIN. We talk about investigations which may be incorrect, especially given the fact that the lab may not be one hundred percent accurate here in Tajikistan, but the understanding of sensitivity and specificity is not fully understood. I ask why the patient might be failing treatment and the response suggests that the patient is to be blamed, “the patient did not follow the instructions” (a further injustice to the patient whom this team of people know nothing about – I also remind myself that the patient least likely to comply is the one least likely to be able to). I try not to gain the position of an unwanted guest and adjust my calm. I plead that we consider the narrative and repeat clearly that we are doctors who look at history, examination, investigation all of which are taken in context of the clinical history. I fail, and subject moves swiftly over to the next patient we wanted to discuss.

Our patients will be discussed at the next concillium. I pass the cups of tea back, show my respect with the Tajik ‘thank you’ and with learnt manner, I smile as I walk out.

I have met with many people of authority here, all indivdually wanting to improve the care of the children. I have no doubt that the doctors care about their patients, but I think they are subject to forces, likely to be economically driven, which ulimately govern how the doctors practice medicine. The doctor in the hospital is good, but he is torn between the demands of the commissioners (every day over the last 2 weeks), the chief doctor (who sits quietly in his office watching daytime TV), and the doctors of the TB programme in general. But in my heart (perhaps naive) and irrespective of money, there is a code that we all follow when we become doctors, the code of duty to our patients. And I remind myself of this, a fortunate reminder in fact, when I go back to the hospital after the concillium; the children are dutifully in bed, but with the odd delinquent still awake, they share a smile and the patient we discussed does not look as bad as she last week, but still sick and in need of treatment. The medical need is great but the forces that will affect change can only come from the highest authorites. This is going to be a personal challenge.

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Around here

I live in the leafy suburb of Dushanbe, surrounded by embassies, well-meaning NGOs and rich Tajiks, who have accepted modern living well, judging by the mid-waist bulges.

GreeneryThe only sign of work is the gardener, who climbs up the rusted ladder, each step about 2 foot apart, to pick the green grapes that neatly dangle in their protected bunches. A boy, probably in his early teens, pushes a wheelbarrow on the uneven road. He is thin and has a long face, slightly skewed to his right. His gait appears normal, but his speech is limited to “beep, beep” imitating the cars that rush by. The wheelbarrow is full of stones and he runs by using his little language. He has a disability and a job ‘of sorts’. In the two days I have been here, I have not seen him play with the other children in the neighbourhood, but no one seems to bother him.

When I return an hour later, he is still “beeping” but his expression has gone from exuberance to tiredness. A house owner in a yellow shirt opens the door of his yellow house to the boy and his wheelbarrow. The boy struggles, to keep the wheelbarrow straight and drops two of the stones. He is not the only disabled person I notice – there are two more, each limping to their right, one pushing a wheelbarrow of stone and the other cleaning the pavements, each in their own world. It is difficult to know what the acceptance of disability is other cultures, only that in this society, the three have a place in this structure.

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