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.
Thank you for your well-written and honest account. I am very sorry to read the outcome of this poor boy. Hopefully an end to his suffering.
hi Kartik
You are a gem in the Chandaria family.
Keep it up
Dinesh
Dear Kartik,
What a powerful story, so futile in some ways yet hopeful as you finish it with Rafiq eating fried chicken!
Stay positive. There is always a way! I am sure you will find it!
Take care.
miss you.
Bina
dearest son
Dad who rarely cries and Mum had tears in our eyes for you and Rafiq and his mum
kartik mum wanted to see you in a suit as a consultant in London hospital but you always were drawn to the less priviledged
We have such mixed feelings happy in what you do but always worried about your health are you eating well keeping warm wearing masks etc
Has any mother in a similar situation,if so please help
If you can’t change the rules of the game, you have to beat your opponents in their game. Rafiq’s appetite for food is a powerful sign of hope. Is there a possibility to improve his diet in the hospital where he is? Fatten him up, improve his energy levels and boost his immune system-rouge his cheeks and then approach the Concilium-not as a ‘in need of miracle case’ but as a ‘sparkling case of hope’-would be in line with the ‘sanatoria’s’ concept.
Project hope is the alternative option….. if funds are non existent for Rafiq’s diet -let me know. loads of love to Rafiq and his mother. A lot of positive and hope vibes your way.
Dear Kartik,
I literally feel your frustration by reading the story, it must be so so difficult over there sometimes. (great writing kartik btw!) .
But you do reach people, don’t feel too frustrated in all of that, knowing your energy does somethimes changes the lifes of some of us (-:
I still remember morning yoga’s and keep on running (in fact i’m putting on my shoes now)…
Warm belgian greetings,
J
Dear Dr. K.,
Just a note to say that you are reaching someone, that your efforts matter, and that you should work to find the balance between caring for yourself and persevering on behalf of others. Thank you for your efforts and for the inspiration you are to me.
Suzanne
Thumbs up for a very brave boy and his courageous doctor…
The great protestant reformator Martin Luther once said: ‘… and if I knew this world would perish tomorrow, I still would plant a tree today…’
Meanwhile, do we have any opportunity of bringing this child for treatment to a clinic specialising in respiratory communicable diseases in Europe?
Specifically, I think of the Medical Clinic 1 of the Goethe-University-Clinics of Frankfurt/Germany under the highly qualified leadership of Prof. Dr. S. Zeuzem.
Please do check out ther website, also availble in English: http://www.kgu-med1.de/
Dear Kartik,
I came across your blog as I randomly read MSF blogs often; doctors/people like you inspire me to go to work everyday. I am also a doctor, working in Nepal, in emergency department and running to places all over Nepal when there is an epidemic or disaster. I plan to work with MSF as well in future, but after I have completed my residency.
Thanks for the inspiration and best of luck for your days to come. I can understand the resource constraints, and the complex politics, being a Nepali doctor. Still, I see hope everyday.
Regards,
Vivek
A very sad situation indeed. Everyone has an agenda; the authorities, the prof, dare I say it , even your good self! Sadly, the weakest have the least chance of getting justice. You are my hero.
Did they do TB drug susceptibility testing for the boy?
The Green Light Committee has approved Tajikistan’s MDR TB project, which means they are receiving low cost, high quality second line TB drugs. UNDP is the primary recipient of Global Fund TB funds, and Project Hope as a sub-recipient has been training laboratory specialists for TB Microbiology tests.
I would say, get in touch with Project Hope or UNDP to check if and how a referral could be realized.
I’ve been following your blog for a few weeks, and am consistently amazed. Thanks for showing us a human side to the work of MSF. As a first year med student, your stories give me context for my studies, and something to aspire to in my career.
Thank you for taking the time to write this article, with all that you have to do. This is a heartbreaking story. It seems that all around us is incompetence and lack of caring, but you MSF doctors make such a difference in the world. Thank you!
Every time I see your article, I cant stop myself from reading it and wondering how selflessly you work for the impoverished people. My heart goes out to such people in distress. The world is so engrossed in violence, wars and materialism that they have forgotten the plight of these poor souls. There is so much pain, agony, disease, hunger and illiteracy in the world and it is the responsibility of developed nations to help other under developed nations overcome this. After all, all we need is a little love and a lot of peace.
When you have done everything possible in your power, sometimes acceptance is the next step. Your unselfishness to give your medical expertise and time is amazing. God might be needing this darling brave little boy. Making him comfortable and being there for him and the mother, might be all you can do at this point. I will send my prayers to the boy and the mother.
I understand the conflict, a child, his mother and his family. I also understand the conflict with resources. If the child is treated with the kind of resources we are used to seeing in the USA, then are there resources for other children and their families? And if his disease is controlled and he returns to his home village and exposure to drug-resistant TB again, when his resistance goes down, when there isn’t enough food, or he is ill with something else, will his disease continue in a controlled state?
I’ve been to Haiti three times now, which doesn’t make me an authority on poverty in developing countries, but I have seen and understand that just because in the USA we can do extreme things to save lives, that the resources aren’t available in other parts of the world. It is very painful and heartbreaking and you need to take care of yourself.
It sounds like the local authorities are trying to use what resources they have to the benefit of those they can save.
God bless you in your work. And many blessings to the mother and her child.
Please take care of yourself so you can continue to advocate and treat. May everyone you treat receive added blessing from your intentions. You are an inspiration.
Beautiful and sad story. The resilience of kids. I would love to email with you around your experience with MSF. Have thought alot About joining myself!!
Dear Kartik,
I think you are a brave young man. To be willing to see suffering every day is something most people cannot do. For your own health, I ask you to remember that the people you work with have an understanding of this issue that is valuable even if it differs from yours. Uncover what they know who have lived there all their lives. You may have to accept their wisdom, as well as their ignorance, if you want to help your patients. Allies are easier to work with than enemies! Kartik, taking care of your health, both mental and physical, is essential to your ability to help others. I have learned this myself after much frustration.
I have a request to make of you: would you please give a hug to Rafiq and his Mom and tell them that someone from Canada sends her love and best wishes. Tell the Mom that I understand her suffering as only another mother can.
I send a big hug to you and please keep all of us informed,
Sandy
Hi Kartik,
Godspeed to Rafiq and Godspeed to your courage in questioning the unfair ways of the world. May your love for this boy and for the other kids prove successful in healing them.
Do you think the early regimen of administering Isoniazid and Rifampicin might have a part in his developing the drug resistant strain of T.B?
I hope God gives you strength in not giving up on them.
Keep the Faith.
Namaste,
Sitarama
This is such a sad story. I’m appalled by the cruelty of the authorities, but then again, this happens everyday, everywhere. I wonder how they can go to bed every night with this guilty conscience, taking away the life of a child as innocent as Rafiq. I guess our governments would rather build streets, and buildings and buy weapons instead of planting flowers and saving lives. Who will enjoy these buildings in the end? Unfortunately at the pace our countries are moving, nobody will.
Dear doctor Kartik
Your message is so sad that I cannot bear to read it all, I can only pray for that little boy’s recovery and for your work. You are really a good man to work in those conditions and to continue without despairing. The mixture of politics with medical practice is not a very constructive one. I hope things get better for you and enable you to work. My NGO in Brazil would like to send you pencils, paper and pens for those children to play. If you think that is possible, please send an e-mail to c.lopesborio@gmail.com
Regards
Claudia L. Borio