Working with Cleft Lip/Palate Patients in Guwahati, India

2/1/2011


We made it!


When I told my friends a couple of years ago that I wanted to go to India, I always heard the same thing:
“Don’t go to India! You’ll get sick!”
“Wow, India. (pause) Why?”
“Don’t do it!”


Much to the chagrin of my friends’ protestations, and thanks to the USC Institute for Global Health, my project this spring is in Guwahati, India, with Operation Smile.


Every day, our walk to the hospital includes the sights, sounds, and smells of Guwahati, the capital of the Indian state of Assam, most notably famous for its tea production. The people here are the friendliest I’ve ever met, offering smiles and waving hello every time we walk by. They’re probably just curious about the steady stream of foreigners that trek every morning past the public toilets and down Danish Road to MMC Hospital, where Operation Smile has been holding their last Mega Mission in Guwahati.


The timing of our project could not have been more fortuitous. Operation Smile had scheduled its last Mega Mission in Guwahati for the exact dates we were planning on arriving! Mega Missions invite dozens of talented plastic surgeons to a site where they perform free cleft lip and palate surgeries for an underserved community. There are an estimated 30,000 people in state of Assam living with cleft lip/palate. Guwahati is unique in that it has been the site for several Mega Missions over the years and will soon be inaugurating the Operation Smile Comprehensive Care Center at MMC hospital. The care center will provide post-operative care for these patients, as well as offer speech therapy, dentistry, and other follow up services.


We were put to work immediately. Patients had been getting screened while the plane carrying 27 Operation Smile volunteers (including me, Kelly, and half the medical team!) was literally sitting on a block of ice at the Newark, NJ, airport because of a snowstorm. When we finally arrived, scores of patients filled every seat under the colorful canopy where student volunteer translators recorded their medical histories. Patients were shuttled in from various districts in Assam, sometimes traveling four, eight, twelve hours to get to Guwahati for their surgeries. The air was a mix of tension and hope as they appeared, waiting anxiously to find out if they were eligible for surgery.


Operation Smile’s screening process has obviously been honed over the years. Patients were ushered from one station to the next like clockwork. Their chart went with them to each station as nurses, surgeons, pediatricians, imaging technicians, etc., filled out their designated sections in the chart and passed the patients along to the next station. After all the professionals make their recommendations for surgery, the chart gets passed to Electronic Medical Records and patients await their verdict.


During screening, we worked with the local student translators to hone the survey we had been working on in the states. Getting their input was really valuable because they were much more knowledgeable about their own cultures and beliefs than Google and PubMed. We’ll be testing out our surveys next week when surgeries start!


2/5/2011
Surveying in India


We’ve made fast friends with the volunteer translators, the local colleges students who worked tirelessly for 12 hours a day for free. I don’t think I’ve had a single internship that rigorous! However, without them this whole operation would never work and everyone is so grateful for their help!


We’ve successfully tested our surveys and have been implementing to patients scheduled for surgery. It was hard to find a niche since the mission is so well run and this public health research was just thrown into the mix. The best time to reach patients seems to be while they wait to get admitted into the hospital or, if they are scheduled for surgery in the afternoon the next day, we interview them early that morning.


The interviews can sometimes be really emotionally draining. Many people in this region are superstitious and believe that cleft lips are caused because of something the mother did during pregnancy. You can see the shame and guilt in the families’ faces as they avoid eye contact or remain silent during the interview. In most cases, the families were very friendly, and their thank yous were sincere.


The other day, Kelly and I decided we wanted to see surgeries, so we geared up and scrubbed in to watch. I had never seen a cleft lip in person before so I really didn’t know what to expect before getting to Guwahati. In the U.S., it’s rare for a child to still have a cleft lip by the age of two and a cleft palate by the age of 5. It just doesn’t happen. Surgeries are performed right away, with follow up care throughout infancy and early childhood. In other countries, that’s not the case. Some of the patients here are in their 20’s, 30’s, 40’s, having lived their entire lives with this disability. You can tell in their faces that it has impacted their self-esteem, and through the interview process, we discovered that sometimes, it keeps children from going to school because classmates ridicule them.


I’m hoping that the surgeries will help boost their confidence again and let them live normal lives. The only thing that bothers me is that they had to wait so long to get this surgery, which doesn’t happen in the states. Hopefully, the care center, which is attached to the maternity ward of MMC hospital, can help these patients at a younger age.


2/21/2011


Only in India!


Watching the plastic surgeons operate is like watching an artist at work. For cleft lips, they first carefully sketch out lines in the flesh, sometimes for half an hour, before cutting. As the operation progresses, you could see the mangled flesh magically turn into a symmetrical, perfect lip! For palates, it’s a much longer, more complicated process that probably takes weeks to heal, if not longer.


Flexibility is definitely needed when practicing medicine in a third world country. For starters, an earthquake rumbled through surgeries one night, shaking the entire hospital! Rolling blackouts are fairly common and nurses scramble to find flashlights while surgeons take a 10 second break. Cargo arrives late, planes arrive late, buses get stopped at district borders, and patients speak tribal languages that even our great translators can’t understand. Despite all of these troubles, friendly medical professionals and non-medical staff from around the world came together to a site for a common good. For one person, this was his 40th mission!


This week was post op, when patients come back one week after their surgeries. The surgeons staying in Guwahati for the care center evaluated each patient to make sure their wounds are healing nicely and that they are staving off infection. Kelly and I wrapped up our project by going through 208 medical charts, pulling demographic and epidemiologic data to supplement our own questionnaire. The past 4 weeks have been both emotionally draining and incredibly uplifting as well. I was walking down the hall once when a mother practically clotheslined me to give me a long hug. She remembered me from the interview and was so happy about the results of her baby’s surgery. Her joy needed no translation.


So my friends were right. In India, I did get sick, but I didn’t let that make me miss the last night all the volunteers were in Guwahati. There was an outdoor banquet with a dance floor and DJ, delicious Indian buffet, and everyone wearing their best saris and kurtas. While we celebrated the end of the mission and our project, we ignored the raindrops that began sprinkling ominously at the beginning of the night. By the end, everyone was drenched and dancing, in the rain, in saris, in India. And that’s how I like to remember my experience in India the best.
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