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.