Sunday, November 11, 2012

Following on up

The other day I was invited to go on a DUFAST (District Follow-Up And Speech Therapy) trip. One of the many things that makes the Guwahati Comprehensive Cleft Care Center unique is that we follow up with our patients. Follow up patients should come to the center four times in total. They should should come for a one week check up, one month check up, six month check up, and nine months check up. It is hard to get the patients to come to Guwahati for follow-up because the journey is often long and they do not consider it important. So, GC4 (Guwahati Comprehensive Cleft Care Center) goes to them.

Almost every two weeks, GC4 sets up a follow-up camp in a remote village. This week we went to Barpeta, which is a three-hour drive from Guwahati, in the middle of nowhere. Barpeta is the capital of the Barpeta district. (All of the states in India—such as Assam, which includes both Barpeta and Guwahati—are broken up into districts.) Barpeta is a quiet and old area (very different from Guwahati) that is known for its curd (yogurt), and historic temples. 

This particular DUFAST was to last two days. But a group of us including Runa Rafique (who is manager of partnerships), two doctors from Sweden, and I drove to Barpeta on some seriously bumpy roads early in the morning and came home late that evening.

The drive to Barpeta
Rice plantations

Let me just say that the highway system in Assam is very different from that in the United States. As a matter of fact, I do not think a highway system exists. On the way there we passed through tiny villages and numerous tea and rice plantations. I was looking forward to experiencing what a follow-up camp is like and of course I was excited about playing with the kids while they waited to be seen, because that’s my favorite job.

When we got to the DUFAST venue, there were lots of patients who had had repaired cleft lips 6-9 months ago. We immediately got put on stage and presented in front of all the patients and their families. They presented our names and put a traditional Assamese scarf around our necks to thank us for our work. 
Patients and their families
Dr. Gaurav, the plastic surgeon getting presented. 

Except for pictures, I have never really seen kids after surgery with repaired lips who are leading normal lives. Most of the kids who come to the center are so shy and withdrawn because they are embarrassed about their lips and/or speech due to their cleft palates. But these kids who had had surgery were so outgoing and so willing to play and smile now that their lips or palates had been repaired. Although I was not familiar with these kids, I am confident they were not this outgoing before their surgeries.

The process at the DUFAST works likes this. A patient is registered. A patient sees the plastic surgeon to determine if a revision surgery or more speech therapy is needed. If more work is required, they are told that a bus will leave from Barpeta on Sunday to take them to GC4. If they need a revision surgery, a patient imaging technician takes their photograph for the records, and off the patient goes. Free lunch is given to the patients.

Most of the patients we saw at this DUFAST needed more speech therapy. The speech therapist was very busy. Even though the cleft palates are closed, it is hard to learn how to talk correctly after
using the nasal cavity to talk for so many years. The patients are given lots of exercises to practice. And speech therapy patients all around Guwahati travel a long way to see the GC4 speech therapist. Having speech problems because of cleft palates can be really embarrassing. No one understands many of these children so they do not go to school and do not have any friends. Also, our speech therapist during DUFASTs educates local people in the community about speech therapy and how to help those with cleft palates speak normally. The speech therapist will come back several times to continue this process.

Repaired cleft lips and cleft palates waiting to play! 
Repaired cleft lip! Isn't she beautiful? 
With her father! 

She had her cleft palette repaired. 

There were also new patients at the DUFAST. 
A new patient! 

Mommy love. Doesn't get better than this. 
A question you might be asking: How do the patients know to come to this DUFAST? GC4 has a top-notch relationship with the National Rural Health Mission (NRHM), which is a health program that provides health care across rural areas of India. A program within NRHM, known as ASHA (Accredited Social Health Activists), trains women from villages to be the face of public health within these small communities. GC4 finds most of the patients—and keeps in contact with most of the patients—through these ASHAs. I really encourage you to read more about the ASHA/NHRM program online as it is really interesting. 

It was such a great experience to meet people from these rural areas and on top of that see GC4’s patients living their lives away from the center.

After the DUFAST, we went to see two historic and famous temples in Barpeta. These temples were used as community centers many years back. At one, loud drums began to play. Everyone literally froze in their place (which was probably staring at us), and stopped what they were doing. It was amazing and seemed so unrealistic. I have never seen so many people stop at one time. 

These women work at the temple. They wear white because they are widowed. 

Females are not allowed inside the temple. 

Standing with Gunilla, a Swedish doctor, and the men who live and work at the temple. 

Sending smiles from India,

P.S. Everyone talks about getting sick in India. They call it "Delhi Belly." We're talking intestinal ills. Westerners are not equipped with the right kind of stomach protection to deal with a lot of the bacteria
in the food here. My roommates can generally eat anything now that they've been here. And I made it a long time without getting sick.

I am in the grip of it. Both of my roommates are nurses, and I will recover, but I'm sick as a dog. This should explain why it has been a long time since my last blog post. 

This little boy was getting surgery at the center earlier this week. He kept coming to find me throughout the day to make funny faces. He loved to play and was so happy. The next day, he got correction surgery to fix his scars. Unfortunately, we cannot help him with his missing eye. 
The cover of the newspaper in Guwahati!
Diwali is coming up (it starts Tuesday, November 13). Lights are everywhere! 


  1. Sorry to hear you are ill - inevitable no doubt.

    Thank you for continuing to share your adventures and insights - you are clearly a remarkable young woman and I am enjoying seeing your world through your eyes.


  2. Hi Hannah

    Hope you get well real soon.. and enjoy Diwali in India. I have read some of your posts and its really nice that you are working for the people in these rural parts of India where its needed the most.
    I live in Silchar and on behalf of all the people here would like to thank you for your work and bringing smiles and confidence back into the lives of these kids. And ones again get well soon and Godspeed.