A name that existed for less than 24 hours but a boy that will forever be remembered by the women at Saheli and me.
In my medical career thus far, I have had one patient die under my care, my direct service as a student: one very sweet Mr. R.W. during my general surgery rotation in my third year of medical school. He was old in age, a poorly controlled diabetic for many years resulting in the amputation of one leg below the knee and had been hospitalized for many weeks. His bed sores were the first I had ever seen in my life and after which I have not seen any that can nearly compare in severity. I remember going home one evening after rounding on the four patients I was carrying thinking that he was doing better but still has a long journey ahead. The next morning, I arrived early to prepare my notes—gathering the vitals and events from the previous night—and walked toward the file cabinet. His chart was not there. I checked on the computer for his vitals but his name was missing from the list. He had died during the night and I only found out in the morning. It was a difficult experience; my first time dealing with someone that I was caring for as a student doctor, yet there was an element of distance still because he was not my sole responsibility. There was always someone above me, a resident or attending, ensuring this gentleman’s care.
Friday morning just before 5am, my second patient died: A young, vibrant, energetic, sharp, rascal of a child named Rahul.
For the first week of January, I was on vacation with my parents and sister around Maharastra and then traveled to Dubai for a week. It was the longest time that I had been away from the Saheli crèche since I started working there in September. Sometime during those two weeks of my absence, Rahul had contracted measles from one of the other children. There were approximately nine children total with measles, exemplifying the inadequate access to immunizations in marginalized communities of India. These children—the next generation of commercial sex workers, beggars, or thieves, or potentially computer engineers, doctors, or teachers if they stay on track with their education—comprise a mixed group. Some lived with parents who were knowledgeable enough to take them to the doctor at birth and in infancy; some have never known the touch of a medical professional. Still, they all live in the constant threat of malnutrition, physical abuse, and neglect. Basically poverty.
The crèche was started to battle against these obstacles by providing a safe space for the children. The goal was to take them out of the brothel environment and give them a chance at a better life. The difficulty comes when providing proper care in terms of nutrition, education, health check-ups, and exercise is directly linked to money and time. This is where I fit in: As a medical student from the United States, I am supposed to fill this gap in delivery of health care. As an American India Foundation fellow, I am supposed to fill this gap in money and time. I cannot help but feel responsible for taking vacation, time for myself, to return only to the uncontrollable situation at the crèche of Rahul’s medical condition.
Back to the story, I arrived at the crèche on Tuesday. Rahul had been having low grade fevers on and off over the last few days by report from the women. He was breathing comfortably though very irritable and refusing to drink any milk. They had gone to the doctor the day before who prescribed Albenmite for the tape worm that he vomited a few nights before. We revisited the same physician at 5pm on Tuesday who said that Rahul seemed to be improving but that we should add Cefpodixime. I learned later that he was probably giving coverage for any potential superinfections associated with measles. We returned to the crèche that evening and gave him some vitamin B and iron supplementation for the angular cheilosis at the corners of his mouth. Granted one dose was not going to cure his deficiencies that may have caused the lesions, but it seemed like the best course to take at present.
The next morning I returned to the crèche to check on Rahul and immediately saw that he was tachypneic with a respiratory rate in the 40-50s and tachycardic in the 115-120s. There was obvious nasal flaring and subcostal retractions (though I know you mostly see those in babies, with his weight of only 10kg for an estimated 5years of age, it was apparent). I recommended to the women that we admit him to the hospital because I did not feel comfortable caring for him at the crèche. We quickly packed his and one of the Thae (sister)’s overnight bags and went to a seemingly respectable and proper pediatric hospital. We waited for half an hour even though I stressed the critical nature of our child’s case versus the well-baby checks that were ahead in line. Our name was finally called but only to sit in another set of chairs, outside the waiting room but closer to the office door. Our names were called again, this time to sit in the office but in the back row watching the previous patient’s examination.
As a side—the idea of HIPAA, privacy, and confidentiality does not exist in India. It may be changing in the adult patient population, especially in the private hospitals modeling after the States and Europe, but definitely not in the pediatric population.
Finally, we approach the physician’s desk, not examination table because the doctors never touch the patients anyway, and he asked,
“Surname?”… well, we did not actually know his surname because we did not know who his father was, whether he was alive, living in Pune, anything. “Kamble” we answered.
“Age?” “5 years” estimating based on his activity level, motor and speaking skills, and the fact that he has 6 other siblings.
“Address”… well, again that was tricky. He lives in the Saheli HIV/AIDS Sanstha Sangh crèche. As I have mentioned before, we are an NGO advocating for the rights—health, HIV and AIDS education, financial security—of commercial sex workers in the brothels of Budwar Peth. There is was, on the table lay our loving boy Rahul breathing heavy and right next to him the words HIV, commercial sex workers, and Sanstha (charity). I worried that we would have trouble with a hospital admission for those very reasons, but somehow I had faith in this physician. I was wrong.
He diagnosed post-measles pneumonia, by his account bilateral after investigating with fluoroscopy. “Change the antibiotics to amoxicillin with clavulanic acid, get these tests done (CBC, ESR, CXR), then come back in three days.” Out the door.
I still felt that Rahul should have been admitted to a hospital for IV rehydration, IV antibiotics, oxygen, and close observation. The doctor, a well established pediatrician far more knowledgeable than I as a student, sent us home. I emphasized to the women at Saheli to take special care of him that night, making sure he drinks the oral rehydration solution and milk and takes his medications appropriately.
The next morning, I took Rahul for the clinical tests and not to my surprise, the doctors at the testing center refused because he needed to be admitted immediately. I took him back to the crèche and again, we packed his bags and went to a different hospital.
This morning at 5:14am my phone rang. It was Didi from the crèche. In Hindi, she asked if I could come to the hospital. “Rahul’s condition is very serious” she said. It was dark and ominous as India seems to be in the early mornings, with few street lights lit and many random men walking aimlessly. I knew I would have to wait 45 minutes until it became light out before I ventured alone in a rickshaw through the red light district to reach the hospital on Laxmi Road. I quickly dressed in a sweater, long pants, and juttis to keep warm and waited on the main road. A few rickshaws passed with passengers; there must be a rickshaw stand down the road. The only problem was I was standing under the one bright lamppost and it was still just breaking into the day. Then a rickshaw-walla pulled up to me and I asked for V.J.Talkies on Laxmi Road. He knew the road but not the hospital and I did not know how to direct him. I pleaded that he find another auto for me that knew how to get there, assuming that most likely he would continue with his day disregarding my call for help. The “every man for himself” mentality is so strong in India that I assume it at all times. Ten minutes later, I see three headlights careening my way. A new character in the story yells for me to get in, that he does not know the way but one of his men does. We race in the opposite direction from the hospital to an auto waiting for me. I jump out of one and hop into the other, not paying in the chaos for that timely and selfless act. This here is a small shout-out, please excuse the informality, to that essential and unforgettable character. I finally reached the hospital; Didi was standing outside to receive me.
“Madam is coming also. I’ll wait. You go upstairs.”
I climbed five flights to reach the PICU, where I frantically searched for the pediatrician covering Rahul. I explained to him that I am a medical student from America working at Saheli and I asked what the situation is. He began to explain…”Rahul’s condition was very serious when he arrived yesterday, he has been sick for a long time with measles and at some point he developed severe pneumonia on the right side, he was already very malnourished with stunted growth, he looks much too small to be 5 years old, we tried to give him oxygen but he kept tearing the mask off his face, shaking his bony head side to side, he kept asking for thumb’s up to drink, in the night he had difficulty breathing so we intubated him, he went into cardiac arrest, we started chest compressions”…At some point I realized what I was listening to. I was in the middle of the speech that doctors give to family member when a death has occurred. With my foot in the first true door to the medical profession as a 4th year student, I should have understood. Still I listened with hope…“we were able to bring him back for a bit but he is so small, his condition was very bad when you brought him in yesterday…” My mind spinning, “What is his condition right now?” “He is no more.” “I’m, sorry, is he dead?” “Yes.” At that moment, Madam ran into the room. We stood in silence for a few moments, denial battling reality, and then the tears came. I keep agonizing over how I could have let this happen, why did I not insist that we hospitalize him sooner, on Tuesday when I first saw him, then he might be alive right now. But we went to the doctor, and I am just a student, and the doctor changed the antibiotics and said come back tomorrow. Then on Wednesday at the crèche when I held Rahul in my arms, his heart pounding above 100 and his breaths double the normal, I pushed for him to be admitted. We went to another doctor and he did the same, changed the antibiotics, ordered some tests, and sent us home. He even knew that he had pneumonia because I told him to listen to the lungs, that I heard crackles and maybe felt a consolidation. They are doctors, not students! How could they have let us just go home? I was furious, frustrated, and ashamed at the same time—furious that things like this occur in America also, frustrated that the situation in India involves such complicating factors like the child of a commercial sex worker living in an HIV/AIDS NGO in the red light district, and ashamed that I did not do enough to help. To prevent his death.
I walked into the physician’s room where he lay wrapped in a pink and purple fleece blanket, the tube still in his mouth outlined by some blue dye to soothe the angular cheilosis. The two Indian doctors, both in their second year of training for an M.D. in pediatrics, and Madam stood watching me. I lay my forehead on Rahul’s chest and I whispered ‘I am so sorry.’ I felt Madam’s hand on my back, motioning for me to control myself and pull away, but I had to tell Rahul. ‘I am just so sorry.’ I closed his eyes tight and walked out of the room only to meet his mother sitting on the bench outside. My eyes lifted to meet Didi and Madam’s stare and I knew their thoughts; they looked to me as Saheli’s doctor to tell Rahul’s mother that he is no more.
We brought her to a smaller room downstairs, the best location to control her grief and avoid making a scene in the children’s ward. Madam’s eyes set my heart pumping fast but I could not gather the words, a mix of fear and practicality that I do not speak Marathi. My eyes replied. She started explaining that Rahul had been sick for a while…sangithla, zala, aushwad…the only words I could discern. Vardla. Vardla? Vardla. Just then, I learned a new vocabulary word. She wailed and turned to Thae, yanking at her fluorescent lime green sari with yellow sequins to cover her mouth, the smell of alcohol filling our small circle. The next moments are blurry in my memory and all I can remember now is that she and Thae left to find the father. Questions flooded my head on how they would find him, who he is, is he really the father or just her current lover, is he going to be violent, will be hit me when he learns that they consider me the doctor who is supposed to be caring for these children, will he also be drunk?
Now standing at the entrance of the hospital were the remaining in the group: Madam, her husband, Didi, Frola Thae, and me. We waited in the cold of the early morning, though I did not know the reason and did not feel like I could ask what was to happen next, when the small Maruti ambulance-van pulled up. Madam’s husband ran upstairs to bring Rahul, still wrapped in the pink and purple blanket with small brown bears smiling and playing about the fleece, to the van. He lay Rahul in the stretcher and I followed, sitting at the back of the van with my hand on the bundle, Didi then Frola Thae, then the door slammed shut. We drove; I guessed the destination but did not dare to ask. This was going to be my first.
We reached a remote part of Pune and drove through the main arch, passing Rahul’s mother and father traveling by foot to meet us. There were several small buildings, tan walls stained with betel nut and dirt, and a few families squatting on the grassy areas. My eyes caught glimpse of a mother and son sitting near a blazing open fire and I wondered. We parked at the beginning of a long ramp leading up to an open room and a few offices inside. Rahul’s father and Madam’s husband removed the little rascal from the van and placed him on a pale green metal stretcher provided by the center. The pink and purple bundle, tightly wrapped and secure, looked so small on that stretcher. I just could not believe what I was seeing. The two men carried the pale green metal up the ramp to the open room where the ceremony was to be held. Rahul’s father disappeared for a while and the women sat on a wooden bench close by. He reappeared dressed in a simple white dhoti, resembling a thin toga split in two pieces. He sat with a pot-bellied man wearing a smooth white undershirt interrupted only by a white string traversing his chest from one shoulder to the other hip. This string under his shirt was the only sign to me that he was a priestly man, for otherwise, he exuded little warmth or divine spirit. Another man joined the two already seated around a small fire bringing his betel leaf plate and mixing the atta (flour) and water within. There was a smaller leaf bowl with five long cylindrical collections of rice. The ceremony started in Sanskrit, no one able to understand, then switching to Marathi when Rahul’s father was directed to wash his hands and change the direction of the cloth slung over his one shoulder to the other shoulder. Watching for twenty minutes, I kept wondering where and how Rahul was going to be cremated. The father then stood up, taking the balls of prepared atta and rice over to Rahul who quietly lay on the stretcher. He tore off some rice and placed it in the boy’s mouth, in his two nostrils, over his two small eyes, and inside his tiny ears. He then positioned one atta-rice combination on Rahul’s forehead, one beside each ear, one on his chest, and one over his neck. I watched; I had never even seen this in the movies. This was real and I was a part of it. I had only been in India for five months, just starting to form solid relationships with these women; it was clear they wanted me to be there, for them and for Rahul. The father then was instructed to pick up a mutka (clay pot) filled with water and place it on his shoulder. Madam’s husband was called to hit the mutka with a sharp stone, piercing a hole in the pot so that a stream of water perfectly and smoothly sailed out of the back side. The father walked around the pale green stretcher, the water splashing on the ground behind him as he moved. Again, the rock hit for a second hole. He slowly circled again with two streams softly pouring out from his shoulder. Again, the third hit and circle. He halted back in starting position, some words spoken in Marathi, and suddenly I watched him drop the mutka. The shattering sound shook my whole body and my eyes shoot to the small pieces of clay and droplets of water coving the ground. My guess was that Rahul was now purified for the afterlife and the divine bodies were awakened to receive him. I hoped for a life better than the one he has lived these past 5 years.
The father and Madam’s husband picked up the pale green stretcher with the small bundle of pink and purple fleece and carried it away, the women wailing Rahul’s name and more gibberish in Marathi. I was almost thankful that they were not speaking in Hindi, their words a jumble of sounds rather than translating true meanings. Still, the look of anguish on their faces and the shrill nature of their wails, I could feel the true meanings. We watched the stretched leave our room and enter another, the final destination.
The women gathered together and walked down the ramp, Rahul’s mother and father in arms, Madam and her husband in arms, me holding my sweater tight around my own shivering arms. They were going back to Saheli or their homes to shower, as tradition calls for a bath after touching or seeing the dead. I was told to go home, take a bath, and rest for the day.
Rahul, I love you and will always remember your wily eyes.