I should have actually written this update when I was still in Ahmedabad, but somehow, time, as always, escaped me.
I ended up spending more and more time with Deepak and his mother, going by his home in the Tekro often with Sunilbhai or Ajaybhai to talk to his mom about taking him to the municipal hospital just to get a checkup. Finally, we agreed on a date. However, on that same day, Sunilbhai had to go somewhere else; I did not want all of the effort of finally convincing Deepak's mother to go to the hospital to go to waste, so I still went by their home and sure enough, they were ready to go. I was determined we would go. With a few phone calls, I got Ramanbhai, another very dedicated Manav Sadhna staff member who has a badge to let us into the municipal hospital, to come and help take Deepak and his mother there. We spent about 6 hours at the municipal hospital, where Deepak had a 2 minute check-up and echocardiogram taken.
The doctor explained to us how there was a hole between the bottom two chambers of Deepak's heart--so, blood that was not completely clean was being pumped through his entire body, thus stunting his growth, causing his shortness of breath, and various other problems. An 8 hour operation that would place a pipe near his heart would help solve this problem. Though his SPO2 level was measured at 70%, which is extremely low, the doctor, after hearing about Deepak's parents' reluctance to have an operation done, told them to just bring him in every 3 months for a checkup and to keep monitoring if his symptoms worsened (dizziness, etc.).
Spending 6 hours in line at the hospital with Ramanbhai, Deepak, and his mother turned out to be a blessing in disguise. I spent much of the time talking to Deepak's mother, getting to know her, finding out what her reservations about Deepak's possible operation were, and building a relationship with her. She told me about how she had seen neighbors in the Tekro slum around her get very sick, go to the hospital, and never come back. She didn't want that to happen to Deepak, and an 8 hour operation sounded very long and scary for her little boy. The only symptom Deepak shows, she kept repeating to me, is a shortness of breath--nothing as extreme as she's seen with other sick people in the slum, so Deepak can't be that bad off, right? I explained to her what the doctor said about Deepak's heart, that shortness of breath at the age of 9 is actually quite a worrisome symptom. Very soon, I saw that a difference was made in her mind not by the content of our conversation but rather by the conversation itself--the fact that I was sitting down and talking to her for hours, telling her about myself and letting her tell me about herself and her son. Soon, she was giving me her phone number and asking me questions about Deepak's condition without any prompting.
Speaking with Kirsten, a neonatal nurse back in the US who was volunteering with me at Manav Sadhna (her and her friend Nattie came to India for the first time for a couple of weeks--only one of which was to be spent at Manav Sadhna-- and ended up not traveling to the other places they were going to go and quitting their jobs, staying for 3 months to volunteer with Manav Sadhna), I learned that she was extremely surprised about the doctor's recommendation that Deepak just come in for regular checkups when his SPO2 level was so low. Doing some research myself, I found out that a normal SPO2 level is well above 90%. Talking to Sunilbhai, who has connections with local cardiologists since he has been a health worker for MS for 8 years, we agreed that Deepak should be taken to a private cardiologist, who may be able to spend more time on Deepak's case. I was apprehensive about Deepak's parents' reaction to another trip to the doctor, especially after it had taken so much convincing to go through with the last one. However, when I showed up at Deepak's home with ice cream, markers, and sketchpads and mentioned that I thought he should go to a private cardiologist (and assured his mother it would not take as long as going to the government hospital), his mother was ready to take him--the very first time I told her!
Once again, I found that building a relationship--the simple small acts of taking the time to talk to her, touch her arm, smile at her, show her I care about her son--accomplished much more than just repeating to her that she was not doing enough for her son. Because Deepak's mother trusted me, she was willing to try a new approach to her son's illness--one that she fears but now understands may be a better path to take than the one she has been treading on.
I've been in touch with Sunilbhai since I have been back in the States and hope to hear more about Deepak soon.
