…The realities of life in India have hit me like a freight train. Today, I walked to a distant part of the slum to see Santosh for the first time since his operation that we organized for him last year.
This is a picture from my first encounter with Santosh on April 3, 2012, when his mother brought him to us because she had heard there were foreigners taking children to receive medical care.
Over the next month, I spent many days with Santosh and his mother, Sugo Devi. We made multiple trips to hospitals in Delhi to see pediatricians and surgeons for consultations, lab work, and surgical preparation.
Most children with cleft lips and cleft palates can have their first surgeries when they are as young as three months old here. However, due to his malnutrition, Santosh had to grow much longer before he could safely undergo an operation.
Santosh grew to the necessary size and on August 30, 2012, was admitted to a hospital in New Delhi to have his surgery.
Santosh’s operation went according to plan and the physicians who cared for him were very happy with the results of his bilateral cleft lip surgery. Due to Santosh’s high risk of infection living in the slums and our inability to ensure proper post-op care, Santosh was kept in the hospital for 12 days. His mother stayed by his side the entire time.
Santosh was finally discharged on September 11, 2012. This is the last photo I have of Santosh, which was taken that very day.
As you can imagine, I was very excited to see Santosh today. I knew that his scars would have healed by now and that his smile would be even more beautiful than ever. I had a big camera in hand to capture his progress.
Ajeet and Mithlesh led the way past thousands of slum residents, fields of trash and feces, and legions of children who will never attend a day of school in their lives. We arrived at Santosh’s home but neither he nor his family was present. We waited while neighbors searched for their whereabouts and crowds amassed to gawk at the foreigner.
Santosh and his family were nowhere to be found and we walked back from where we had come. I carried on with my day and visited other patients, students, and families.
This evening, I received the tragic news. Mamta answered a call from Mithlesh after dark and, while still on the phone, turned to me and said, “John…Santosh is gone.” I asked, “Where did he go?” She was listening intently to the phone and simply pointed to the ceiling.
Earlier today, on the very day that I returned to see him, Santosh left our world. The cause of his death is still uncertain and I expect that it will never be known. His father reports that Santosh became noticeably ill about 4-5 days ago. That is all I know at this time.
This is obviously not the way I envisioned my journey beginning. However, this is the burden we have chosen to bear. Mamta, Mithlesh, numerous physicians, and I spent many days of our lives fighting to improve Santosh’s life. We thought that his biggest hurdle would be overcoming a deformity. The thought of him dying never crossed my mind.
Life here in the slums is grim. I do not always convey the extent of the suffering and poverty because you would probably stop reading. After a while, it is natural just to look away. We are fighting destiny, there is no doubt about it.
Although we will certainly cherish the many victories of our work, we must also be prepared for, understand, and learn from the failures. These are human lives at stake; no matter how difficult this work can seem we must never lose sight of its importance.
I predicted that my return to India would come with many challenges. Santosh’s death today has made this poignantly apparent. However, we also have much to celebrate and those posts will come at a more appropriate time. For now, let us remember Santosh and his smile. May we learn, through his death, to sustain and improve the lives of those still with us.