When Dilip Deka, a medicine shop owner and his wife Kalyani arrived in Guwahati on June 6 2008, carrying their 4-years old feverish son, they did not know that for the next three years their little son would only be a frozen self of himself. After a brief stay at the Sanjeevani Hospital, Guwahati, the couple shifted the child to International Hospital on June 7-where he was prescribed a MRI scan. With the hospital not having a facility for MRI, the patient was taken to a nearby diagnostic centre for the same. Recounting those horrible moments Dilip Deka says, “While returning from the diagnostic centre, babu developed a severe respiratory problem in the ambulance. There were some difficulties in removing the nut bolt of the oxygen cylinder and I became very nervous. Those were bad times….only a father can understand.” Reaching the hospital, the patient was rushed to the paediatric ICU, and that was the last time till now that the couple could interact with their son- Hrittik Raj Kashyap. I heard a lot about this couple and their struggle with their son, and always wanted to meet them and talk. And finally in late May, 2011 I struck up an interview.
As I entered the ICU and was ushered into a special section, my eyes fell on a terribly weak and pale face, with the hair tied up in a pony. A thin pipe from the ventilator penetrated into Hrittik’s neck and a feeding pipe into his abdomen. On top of the bed there hung a yellow balloon reminiscent of the patient’s small birthday celebration held within the ICU. The deflated balloon read, “Happy birthday Hrittik.”
Hrittik, a class KG student of Frontline English School, Baihata Chariali then had been quite healthy and sporty, always with a smile on his face till early June 2008, when he started speaking in delirium and had fever. In the MRI he was diagnosed with Japanese encephalitis and on June 8th young Hrittik was put under the ventilator. For three years now, Hrittik is under that ventilator, opening his eyes sometimes, twisting his lips, smiling when his mother tickles him and sometimes restlessly kicking the nurses when they give him injections. Hrittik’s encephalitis has paralysed his body and damaged his brain. Many of his vital activities have stopped for good. Probably he will never talk or walk again. His treatment now consists mainly of palliative care, caution against any infection and physiotherapy. Every day for about an hour or two, the ventilator is put off, to allow Hrittik’s body to accustom itself with the natural environment, but after a stipulated period of time, he can’t stay normal and the machine is put on again. Prolonged ventilation has somehow made his body lose the spontaneity required for normal breathing.
Japanese encephalitis is a neural inflammation and infection of the brain causing neural disturbance and damage. Its severity is much more pronounced on children than on adults. In patients who develop complications in the central nervous system, lifelong neurological defects such as deafness, mental retardation are expected. Domestic pigs and wild birds are reservoirs of the virus. One of the most important vectors of this disease is the mosquito Culex tritaeniorhynchus. This disease is most prevalent in Southeast Asia and the Far East.
Hrittik’s parents took a cabin in the hospital for themselves for a few months, but unable to manage it financially, decided to let it go and started sleeping in the lobby outside the ICU. Doctors told them that sleeping in the common lobby for a prolong period might lead to their subsequent ill health. The couple now lives in a rented house near the hospital.
Dilip Deka has given his lifelong earning for the treatment of his son. Till now he has already spent about 50 lakhs rupees, but they still owe around 28 lakhs more to the International Hospital and another several lakhs to friends and relatives from whom they borrowed the money at the time of utter crisis. Whenever there is an infection, the expenditure suddenly shoots up. In late 2009, Hrittik developed a severe pneumonia and those frantic three weeks of pneumonia treatment cost about 1.5 lakhs.
The Chief Minister of Assam donated about 50 thousand rupees for Hrittik’s treatment while the Jalukbari Block Congress gave one lakh rupees for the purpose. Popular singer Zubeen Garg led a procession in the city and raised about 38 thousand rupees for the diseased child. Several media houses including NDTV broadcasted the family’s plight and that paved the path for donations from all over the world. Help in the form of about 15 lakh rupees poured in from Singapore, Abu Dhabi, Qatar, London, and the USA. Well wishers from all over Assam, came forward with whatever they could.
As I was talking to Mrs. Deka, she suddenly got up, and pulled out an envelope from her bag. From the envelop she took out a bundle of photographs. Pictures of Hrittik getting ready for his first day at school, playing with his uncle, with his dad, kissing his younger brother, Dr. Prakritish Bora, Senior consultant paediatrician International Hospital, cutting a birthday cake on Hrittik’s birthday in the ICU, and many more. Holding one of the photographs, she said, “He looks like Darsheel Safary, doesn’t he?”
Hrittik’s brother Bondhon was only a year old when Hrittik was diagnosed with the disease. Little Bondhon doesn’t have any memories of his elder brother nor of his parents who have left him to his uncle and aunty for the last three years. Mrs. Deka says in a sad tone, “I left my younger son to my brother in law. He and his wife will be Bondhon’s parents…. I couldn’t have been unfair on my Hrittik….. I can’t divide my attention at this point of his life. So, I have sacrificed my younger son.” Bondhon, now a four years old healthy school-going child, visits his brother once in a while, stares at the pale yellowish face, and sometimes asks to the air, “Whose house is this?”
Hrittik’s mother laments, “God shouldn’t have done this. He has neither given us our son nor taken him away. We are in the midst of a chakravyuh– we don’t know where all this is leading us. We don’t know how tomorrow will be or what more challenges tomorrow will throw at our face. I keep looking at babu’s face all day long and whenever he opens his eyes my heart leaps up with joy but then again…….”
In a sympathetic tone I asked the parents if they had ever considered a decision favouring the removal of ventilator service from Hrittik. But they vehemently said, “We can’t even think of anything like that, even in our most eccentric dreams. If God is not taking him away from us even after all this, we have no right to do so…..”
As I was coming out of the room, my eyes again fell on the child’s face and then the deflated balloon on top. It suddenly seemed as if in that gloomy cold ICU, the balloon looked at all of us and said, “Look I still have some air inside me. If destiny wants, I will swell up again!”
I looked at Hrittik’s face again, prayed for his recovery and left.
This article appeared in The Assam Tribune on August 6, 2011 and on the online literary journal Vayavya.