Deepak

There are too many heart-wrenching stories like this one to tell. They are hard for me to tell because they are extremely hard for me to understand. Nonetheless, here is one of many stories, some of which I have seen, many of which I have not, and each of which is the most important story in the world because it is about a human life.

I met Deepak briefly when I was in Ahmedabad for Holi and have been learning as much as I can about him since I have been back. When I met him, I was in the library at Manav Sadhna's Community Centre in the Tekro slum. When he came in with Sunilbhai, the Health Project coordinator, I looked down briefly and saw something was on his face--since all the children who come to the Centre or any activities with Manav Sadhna are taught to bathe and be clean every day (and we are supposed to be repeating these lessons about hygiene to them), it is a reflex for me to tell children who are dirty to go clean up. So, when I saw he had something on his face, I thought it was probably remnants of lunch, and patted him on the head and said "hey, what's on your face? Don't you need to wash it off?" That is when I looked closer and saw that it was some sort of a rash, just as Sunilbhai came up behind him and started to tell me Deepak's story.

I listened as Sunilbhai told me that the adorable, dimpled, brightly smiling 9-year-old boy standing in front of me had holes in his heart and various other heart problems. This was the cause of the rash on his face. After he was diagnosed, his parents were told that he needed to be taken to a heart hospital in Bangalore for treatment ASAP. A volunteer from Singapore offered to pay all of the expenses--travel, surgery, post-op, medicine, etc.

It has now been a year and a half since Deepak was diagnosed. His parents have not so much as taken him to the local government hospital to get another round of tests done. While all the other kids his age run around and play, Deepak gets short of breath walking from one end of his small schoolroom to the other. His teacher says he can't hold a pen long enough to write an entire exam paper. His mother gets mad at him because he doesn't bring home great grades. When Sunilbhai and I went to talk to her, she sat in the corner of the room and listened, watching Deepak eat his lunch in the other room, as Sunilbhai told her that frequently going back to the village "bhua" (a village elder that many villagers look to as a supernatural healer, among other things) is not going to treat Deepak, whose condition is getting worse and worse. Sunilbhai even tried explaining that it would be less of a hassle to take him now, rather than at the last minute when he has to be rushed to the hospital without any planning and doctors have to work to try to do what treatment could have done to him before and with much less suffering. She nodded through the conversation, eyes wandering, sometimes listening, sometimes not, and at the end, said she would think about taking him after his exams are over in a few days.

From what I can gather, the main things she is worried about are: Going to a city where they do not know anyone and Deepak missing classes. But most of all, I think she is scared.

Seeing disease and sickness around me is one thing, but seeing disease and sickness that can be treated (having the financial, logistical, etc. resources) going untreated is a very foreign concept to me. It makes me sick to my stomach to see this beautiful boy sitting down with his classmates trying to catch his breath after a short walk. Every time he looks up at me and flashes me a big dimpled smile, I think, how can a mother watch as her son dies, literally before her eyes? How can she go about caring for him, fussing over him, washing his face and hands when he comes home and helping him with his homework, when what he needs is medical help, fast, and she is not getting him it even though she has the means to? What can Sunilbhai say, what can I say, what can anyone say to convince his parents to take him?

I know she is scared. But I hope, I am praying so hard, that her and her husband do decide to take their son to Bangalore next week. I really hope he is not expendable to them (I have heard, too many times, some parents say that they can always have another baby). And I really, really hope it is not too late when he does get to the hospital.