Challenge is perhaps another name for life and struggle is another metaphor for existence. We never know what surprise lies in store for us, a few hours from the present. And yet, we move on. We move on, not because we are great warriors, but simply because for most of us, life is actually not that harsh. But for some, life can be ruthless.
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 ws 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. By the side of Hrittik’s bed, two huge computer-based machines were placed, and a number of critical indications were constantly observed on their screens. A thin pipe from the ventilator penetrated into Hrittik’s neck and a feeding pipe into his abdomen. By the other side of his bed, a rack was placed which contained, a few lotions, medicines, and some religious books- all neatly arranged and systematic. 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. Even now as Kalyani Deka recounts that horrendous day she has tears in her eyes and says, “We felt as if a tsunami has struck us, blowing away with it our home, our dreams and snatching our son far away from us. We did not know where to look for help, whom to believe whom to put our faith on.” On a practical note, that day when the doctor read out the MRI report Kalyani Deka didn’t know that her son would plunge into a deep sea of unconsciousness for an extent which no one could predict. 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.
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 soon realised that the treatment would be a very costly one, especially considering the uncertain prognosis of the disease. They discarded the idea of an airlift to Apollo, Delhi considering the huge cost of the entire process. Instead they suggested to Dr. Prakritish Bora, senior consultant International Hospital, Paediatric Department to call experts from Delhi. After a few days, Dr. Dhiren Gupta from Gangaram Hospital, Delhi came to check Hrittik. He checked the young boy’s pupils and told the parents that the case is “not hopeless” and efficient and effective medical care may return their son to them- though may be in a paralysed state.
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 sleep in the lobby outside the ICU. Things were going out of proportion and the couple didn’t know which way to turn. Doctors told them that sleeping in the common lobby for a prolong period might lead to them being hospitalised. The couple started searching for a room in a lodge or a rented house, and they faced tremendous problems in that too. Mr. Deka says, “Some of them worried that we wouldn’t be able to pay them the rent, while others had issues with us returning at about mid night from the hospital.” Somehow they found a lodge just behind the hospital complex and stayed there for some time until it was taken over by builders for newer constructions. Then started another desperate search for accommodation in this busy city bustling with selfish activities, and finally they found a rented house at about three thousand rupees per month.
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 ( but the authorities have never put any financial pressure on the party) and another several lakhs to friends and relatives from whom they borrowed the money at the time of utter crisis. Hrittik’s father says, “Whenever there is an infection, the expenditure suddenly shoots up. We are then placed in a very difficult circumstance.” In late 2009, Hrittik developed a severe pneumonia and doctors almost gave up any hope for his recovery. Those frantic three weeks of pneumonia treatment struggling with the infection had cost the about 1.5 lakhs.
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. A possible way to cope up with the high cost treatment at the International Hospital was to shift the child to Guwahati Medical College Hospital. Expressing his strong dismissal of that possibility, Deka said that he could in no way compromise with the facilities his son was receiving in the private hospital. On the other hand, the parents are all praise for the authorities and staff members of International Hospital. The patient has not developed any bed sore in these three years and the feeding and changing positions are done with utmost care.
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. Hrittik’s grandfather believes that his grandson will return home one day, fine and healthy. His relatives visit him regularly in the hospital, pray with the family and are very optimistic about his recovery.
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. Bora cutting a birthday cake on Hrittik’s birthday in the ICU,… 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 the former 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. None of our family members think so. We think even if there is a court order, no one can press that death button for my little son. 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.
(Abhishek Saha, a third year Civil engineering student BIT, Mesra, is an active blogger and freelance photographer. He can be contacted at firstname.lastname@example.org)
The article has been sent to The Assam Tribune for publication.