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.