A maid in our building has a 10 year old son who sometimes comes to work with her. A month ago I tried to talk to him but mom told me he was born deaf. He could say a few words but that was all. After further questioning, she told me he had been worked up but never got any treatment. The hearing aids supposedly cost Rs. 10,000 ($200) but she could not afford them. I asked the lady for whom she works what the real story was. Unfortunately, due to a variety of reasons (language barrier, lack of education, lack of understanding, screwed up priorities, living beyond their means, etc, etc.) there are often two sides to the story. She told me that GE had done the work up and was even willing do get the hearing aids but mom never followed up. Mom added that she was not given any of the reports from the testing so she went and got repeat testing done on her own. It did not make sense to me but rather than try to get to the bottom of the whole story, I thought I would try to help the kid. I offered mom if she wanted me to look into it, I could look at the reports she had. It took several weeks for the reports to materialize. They were all Greek to me so I took them to the local clinic and found a kindly ENT who looked them over and directed me to go to a local hospital.
I was warned that the lines start early so to get there by 9 am. We reached at 9 am and the line already had 50 or more people in it! Not feeling particularly patient I went in search of the audiology department. If they were not going to be able to help, I sure did not want to spend an hour or more in line. After wandering around asking directions and being shuttled from one floor to another, we ended up 15 minutes later just next door from where we started. I found a doc who turned out to be the head of the dept and he said yes they can help but we had to go back and get a card. Getting a card meant standing in the line which seemed even longer now. But there was a line only for ladies. Mom was quickly put into that line. I noticed that everyone was holding a slip of paper. To get the paper you had to crowd your way up to a counter, fill out another form and pay a registration fee of Rs. 500 ($10). While waiting to get processed, several people were asking others to help them fill out their form as they were illiterate. For some reason, no one asked me. Maybe they thought I was as dumb as I look. I finally shoved my paper in front of the clerk and she told me to wait there for a bit. Our driver Murli had come along to help as I dont speak Kannada (the local language). Murli is a young guy with a good heart who looks out for me since I dress and speak differently than the locals whether it is Hindi or English. He thought I was being ripped off and got into an argument with the clerk. Murli told her I was a foreign doc (I was catching bits of the conversation in Kannada) who was taking time to help a poor kid. I got the impression that the clerk was going to speed things along in some way by her earlier tone so I gently told him to hang on. The clerk got our form processed, gave me a receipt for the full Rs. 500 and told me to go directly to the ENT dept. A little incredulous, I pointed to the long line and asked if I needed to go there first. She waved me on and said no need! So before she could change her mind, I grabbed Murli and scooted off while thanking her profusely.
Back to the ENT dept where we were led right into the dept head's office. If you are "foreign", sometimes you get ripped off but you also get pushed to the front of the line in other situations. He looked over the test results briefly and did a shoddy little look-see that a medical student would be embarrassed to do. He said the boy would need a cochlear implant and to go see another ENT. Dr. V spent about 45 minutes patiently examining the boy who did whatever was needed with a smile on his face. Never once did I see any sign of fear, frustration, or irritation. I doubt he had any idea of what really was going on. Dr. V said she was afraid his severe hearing loss and late age (they like to do it by age 2 or 3) may require an implant. She said hearing aids start at Rs. 20,000 each but an implant would cost Rs. 750,000 just for the device. The surgery however (OR time, 5 days inpatient, food, therapy, everything except the antibiotics) would cost........wait for it.........Rs. 500!! They have a huge trust that allows them to do that. If he was from out of town, he would stay absolutely free in the dorm for 3-6 months for the intensive therapy needed post implantation. Anyway, I was mulling over the challenge of raising about Rs. 850,000 ($17,000). How do you justify spending that kind of money on one child when there are critical needs all over the country that cost a fraction of that? Dr. V voiced my concerns regarding the committment of the parents to bring the child to therapy as that would be the more challenging part. Dr. V suggested that we get the parents to chip in as well. She explained this to mom in Telegu and stressed that whichever route we chose, post device therapy was absolutely essential anywhere from daily to every other day. Mom readily agreed to the financial responsibility as well as the time committment. Dr. V added that a strong hearing aid could suffice and they ranged from Rs. 20,000 to 80,000 each. A speech therapist would make the final call.
Ms K was the speech therapist who was also very patient with all of us. She spent another 30 minutes with us looking over everything and doing a detailed history and exam. She thought he might be able to avoid surgery but the hearing aid office was closed so we had to come back the next day. I again stressed to mom that this was a long term time committment and a financial outlay for multiple parties. She was completely willing. Still the skeptical old man, I wondered if she would come to the appointment the next day. I showed up at the hospital but no mom or boy. I was somewhat relived that she backed out at this point rather than a month into therapy. Murli and I wait for 30 minutes and just when we were about ready to leave, we get a call from dad that they were down the road. Glad that the parents were just running on IST (Indian Stretchable Time), we met up and went in. Ms. K eventually saw us and had borrowed an analog, and a digital pair. The previous day, he had been seated in a chair with the doc behind. Dr. V clapped loudly behind him with absolutely no response. Today Ms. K slipped in the analog pair and his eyes got a little big when she switched them on. Seeing him respond to a whole new world of sound was enough to warm even my cold heart! (You become a little calloused from all the bogus stuff you see, as well as a defense mechanism against all the real suffering you come across). And when Ms. K clapped, he turned around immediately. Surprisingly, he did better with the analog ones! His mom is going to have her employers hold back a little of her salary each month and pay it directly to the hospital. Building residents who heard about the little boy have come forward offering to help financially too!!
It is fantastic to see folks come forward. His hearing aids have come in and he should start therapy next week. Hopefully this will give him some options in life. Keeping my fingers crossed!
