So I figured I'd give blogging a shot since I've been hanging around with not much to do these past fews days and thought that this would be a good way to keep track of what I'm doing on a day to day basis so I can remember things that I'll need to put in my paper later on.
But for those of you that don't know the main purpose of this trip is to do some field work for my masters practicum. As a country, India does not have a national newborn screening program. Different states have introduced pilot programs to screen for various conditions but there is no uniformity or consistency. Some programs provide the adequate follow up care while others just provide testing and leave the interpretation and subsequent action up to the families. There are a few regions in India where sickle cell disease and trait are prevalent (connected to the malaria belt if you remember that being a carrier for sickle cell is actually beneficial if you got malaria). I have been working with a doctor at Children's Hospital in Pittsburgh who has connections to two of the sickle cell clinics in India to see how we can help the clinics in India better organize and structure themselves so that they are providing families with the best care possible.
Right now, the clinic in Gudalur offers a comprehensive program for sickle cell. They screen everyone. Newborns, children, and adults so it technically is not a newborn screening program but in someways it is. The clinic in Gujarat provides the newborn screening but does not do much in terms of follow up and treatment because they don't want to step on the toes of the physicians in the area. A group of health care professionals in the US have created a document called PEAS: Performance Evaluation and Assessment Scheme for Newborn Screening. This document provides a checklist of all the necessary steps and conditions to have a full blown newborn screening program like those in the US. This checklist can be adapted for different developing countries and I am using a revised checklist to help determine what needs to be done at the clinics so that they can better serve the community.
I have done a lot of background research and shadowing but I have no way of knowing how this trip is going to go until I actually go the clinics and see what they have to offer. It's somewhat nerve wrecking but I'm excited to see how things work in India.
April 28th - May 3rd
I left Thursday evening around 6pm and reached India around 11:30am Saturday (IST) which would be around 2am Saturday (EDT). All in all a long journey but my flights were pretty uneventful. I forced myself to sleep through the majority of the long flights from Pitt-Paris and Paris-Bangalore. Had a 7 hour layover in Bangalore which wasn't too fun since it was from 2am-9am and there wasn't much to do. I had to stay awake since I had all my luggage and couldn't check anything in until the counters opened at 7am but I had Will and Grace to keep me company for a few hours.
But at 9am, I boarded my flight from Bangalore to Coimbatore and was at my grandmas by 11:30am where I promptly had brunch and fell asleep until 6pm. Of course it would be my luck that my computer decided to crash somewhere during the time from Bangalore to Coimbatore. At first it looked like it couldn't be fixed which threw me into a panic since I actually needed my computer while I was here working but from what my cousin told me, he and his friends at work managed to fix it but until I get it back from him I'm using a laptop a family friend lent me. Not the greatest way to start my trip but at least things are good for now.
The first few days here have been pretty chill. I've just been lounging around and unpacking and getting things ready for my first clinic visit. My cousin came to visit yesterday and brought her adorable daughter who will be one in June. The last time I saw her she was a one and a half month old baby. She was the cutest little thing and a good sport about pretty much anything.
But for those of you that don't know the main purpose of this trip is to do some field work for my masters practicum. As a country, India does not have a national newborn screening program. Different states have introduced pilot programs to screen for various conditions but there is no uniformity or consistency. Some programs provide the adequate follow up care while others just provide testing and leave the interpretation and subsequent action up to the families. There are a few regions in India where sickle cell disease and trait are prevalent (connected to the malaria belt if you remember that being a carrier for sickle cell is actually beneficial if you got malaria). I have been working with a doctor at Children's Hospital in Pittsburgh who has connections to two of the sickle cell clinics in India to see how we can help the clinics in India better organize and structure themselves so that they are providing families with the best care possible.
Right now, the clinic in Gudalur offers a comprehensive program for sickle cell. They screen everyone. Newborns, children, and adults so it technically is not a newborn screening program but in someways it is. The clinic in Gujarat provides the newborn screening but does not do much in terms of follow up and treatment because they don't want to step on the toes of the physicians in the area. A group of health care professionals in the US have created a document called PEAS: Performance Evaluation and Assessment Scheme for Newborn Screening. This document provides a checklist of all the necessary steps and conditions to have a full blown newborn screening program like those in the US. This checklist can be adapted for different developing countries and I am using a revised checklist to help determine what needs to be done at the clinics so that they can better serve the community.
I have done a lot of background research and shadowing but I have no way of knowing how this trip is going to go until I actually go the clinics and see what they have to offer. It's somewhat nerve wrecking but I'm excited to see how things work in India.
April 28th - May 3rd
I left Thursday evening around 6pm and reached India around 11:30am Saturday (IST) which would be around 2am Saturday (EDT). All in all a long journey but my flights were pretty uneventful. I forced myself to sleep through the majority of the long flights from Pitt-Paris and Paris-Bangalore. Had a 7 hour layover in Bangalore which wasn't too fun since it was from 2am-9am and there wasn't much to do. I had to stay awake since I had all my luggage and couldn't check anything in until the counters opened at 7am but I had Will and Grace to keep me company for a few hours.
But at 9am, I boarded my flight from Bangalore to Coimbatore and was at my grandmas by 11:30am where I promptly had brunch and fell asleep until 6pm. Of course it would be my luck that my computer decided to crash somewhere during the time from Bangalore to Coimbatore. At first it looked like it couldn't be fixed which threw me into a panic since I actually needed my computer while I was here working but from what my cousin told me, he and his friends at work managed to fix it but until I get it back from him I'm using a laptop a family friend lent me. Not the greatest way to start my trip but at least things are good for now.
The first few days here have been pretty chill. I've just been lounging around and unpacking and getting things ready for my first clinic visit. My cousin came to visit yesterday and brought her adorable daughter who will be one in June. The last time I saw her she was a one and a half month old baby. She was the cutest little thing and a good sport about pretty much anything.
Samyutha Shree
She was basically ready to be picked up by anyone.
We decided to put on the dress that my mom, sister and I picked out
Baby, My cousin's husband and my cousin
She did get a little antsy later on but it was so much fun to play with her :-)
I think they'll be visiting again right before I leave so I'll get to see her again
My cousin's visit has pretty much been the highlight of the trip so far. It's so crazy hot right now that I have no desire to even step outside the house. I took my grandma to the store at the end of the street yesterday and in the five minutes that it took I was sweating so much. I don't know how I'm going to deal with the heat when I get to Gujarat but at least the first clinic I'm going to in Gudalur is up in the mountains so it'll be nice and cool.
I think my aunt and I are going shopping later this afternoon so I can pick up a few things I'll need for my trips and some of the other things thats I have had requests for. If you want something let me know and I'll try my best but no guarantees.
I do need to pack at some point today because I leave for my first clinic visit tomorrow.
I'm going to a clinic in Gudalur, Tamil Nadu tomorrow. There is a population there that apparently has a high prevalence for sickle cell trait. This is the website for the hospital: http://www.ashwini.org/index.html
The hospital has done a great job with screening individuals and families and providing appropriate treatment and follow up care that is necessary for individuals with Sickle Cell Disease. They have also done a great job at establishing an "insurance" plan so that families don't have to worry about the cost of the treatment and will come forward when they need appropriate treatment. Apparently they have a lot of foreign visitors because they have a "guest house" for the visitors and provide food for them during the stay so I have everything taken care of for me. I just have to show up and bring my clothes for a week.
I have a four hour car ride ahead of me tomorrow so crossing my fingers and hoping that the first part of this trip goes well :-D
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