Thursday, February 13, 2014

Forgot to ask you...

My plan in Guwahati was to start launching our research project on quality of life of people suffering from cleft disease.  Even though the estimate is that 1:500-1000 children are born with cleft disease, it remains to be defined what the burden of this disease is, as in United States and other high-income nations, all these cases receive surgical repair, along with dental, speech, and psychological support right at the beginning of life.  But Guwahati, is a different place.  Here resources have been scarce and the majority of the population lives on what they make as farmers for big plantations of the world-famous Assam or Darjeling teas.  There is an estimated backlog of 30,000 cases of cleft disease and that also means, unfortunately, a lot of people with cleft that are reaching adulthood without having received any care.  I knew this, and this was precisely what attracted me to Guwahati.  In preparation for this trip, I tried to educate myself on how is cleft disease seen in the global health arena.  What I found was that cleft was lumped in a category known as “congenital deformities”, where club foot, polydactily, etc. were also a part of.  And it was thought of as a condition that had very low mortality and low morbidity, so therefore, it ranked low for disability-adjusted life years (DALY’s), a common currency metric developed to compare conditions against in each other and ultimately, have a priority setting that the United Nations, World Bank, World Health Organization, countries’ ministries of health and funders all refer to when making their own agendas and resource allocations.  Surprisingly, cleft patients were not part of the process of obtaining an idea of what disability cleft disease carried, especially if it remained untreated.  That is exactly what I set myself to do and Guwahati seemed like the right place to do it. 

As I trained the research assistants, who were 3 pleasant Assamese women, all in their early twenties, all with masters in social work or child development, I started to wonder, how much of these questions on quality of life, written and validated in developed nations with likely way more education than the patients coming into the center had ever had, were really going to get through to them and the patients we were about to interview.  But, I kept on and asked the questions.  I would simplify the phrases when necessary and assess their body language to see if they understood me.  But still I wondered. That is when I interviewed Kiran (named has been changed), father of 7 year-old, Meena (name has been changed).  His girl was about to have surgery that day, and they had come 8 hours away by bus.  I asked her about his Meena and how she was feeling about getting surgery.  As the translator explained to me, his girl had been suffering in school as she was teased for her cleft lip and palate, because her mouth looked funny and kids could not understand what she said.  She wanted to play with the rest of the kids, she wanted to be liked by her peers.  He shared that as soon as she found out that there was surgery that could fix her cleft lip and palate, she asked her father daily, “when will you take me to get the surgery?”  I tried to hold my own sadness, thinking how her father must have looked into her child ‘s pleading eyes, and wonder how he could help her.  But now she was here and his father’s broad smile, revealed to me, this was not a moment to dread or to be nervous about, this was a moment of joy.  He said that his daughter will go back and go show everyone her new lip, that she is already talking about that moment.  And as I listened to him, despite the world of experiences that set our lifes in different directions, I understood and I could hear Meena through her father's story, loud and clear.

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