Every year, some thousands of children of different states of India become victims of Acute Encephalitic Syndrome (AES). AES is an umbrella term for all clinical-neurological manifestations of inflammatory brain diseases caused by wide range of viruses, bacteria, fungus, parasites, spirochetes, chemical and toxins. The disease is mostly affecting children up to age group of 15 with high mortality rate or leaves them with permanent neuropsychiatric disabilities.
Gorakhpur of Uttar Pradesh and its surrounding areas are one of the worst affected zones by AES every year. It is strongly believed that AES is significantly linked with enteroviruses in this zone because of contaminated water, improper sanitation and unhygienic habitation; but the exact aetiology is not identified in most of the cases. Monsoon makes this condition more vulnerable every year.
Baba Raghab Das (BRD) Medical College & Nehru Hospital in Gorakhpur alone gets more than thousand of AES cases every year and witnesses nearly 700 child deaths in every monsoon. It is the only medical institute with a dedicated epidemic ward that caters the endemic victims of 19 districts of Uttar Pradesh, Bihar, Assam and also bordering areas of Nepal.
“Monsoon of Death” is an “incomplete” long-term visual reportage project on one of the most ignored and underreported hyper-endemic medical emergency of post-independent India that has claimed nearly 10,000 innocent lives only in Uttar Pradesh since 1978.
[Year of documentation: 2013; Status – Incomplete]
Rajinder Arora, Prof. (Dr.) K. P. Kushwaha, Shyam Tripathi, Dr. Safi Ahmed, Sayantan Bera and Kaushik Dasgupta
Every day some hundreds of children along with their families are coming from different parts of Gorakhpur and its surrounding areas in the pediatric out patient department of BRD Medical College, Gorakhpur. The lack of access to the basic healthcare facilities in the rural hinterlands that creates the enormous pressure to this institution.
BRD Medical college is the only medical institution in this entire region that has a dedicated epidemic ward of about hundred beds to tackle the encephalitis victims. But the number is too less to handle this hyper-endemic situation.
Every monsoon, AES creates the medical emergency in Uttar Pradesh (UP). Though the numbers of entero-viral AES are on a higher side, but number of vector borne Japaneese Encephalitis (JE) cases has been reduced in past few years after the introduction of the JE vaccine, but not yet completely eradicated.
AES is a constellation of clinical signs and/or symptoms, i.e. acute fever, with an acute change in mental status and/or new onset of seizures. Along with that severe headache makes these children crazy.
Children between the age 6 months to 15 years are the common prey of AES. Tragically, this disease is affecting only poor children – the ones struggling against malnutrition and poverty.
These children, mostly malnourished, are suffering from AES. Doctors say malnutrition is a major reason which makes children vulnerable to this disease. They are children of labourers working in brick kilns, agricultural farms and marginal farmers.
Most of the AES cases come from the lower socio-economic groups of hinterlands and stand at no point of return. And the epidemic wards become the home of these families for indefinite time. This creates the risk of opportunistic & cross infections to others.
The corridors, pediatric & epidemic wards are crowded with parents whose children struggle for every breath in the intensive care units.
In the epidemic ward and ICUs, some children breathe strenuously even on ventilators. Most of them have shrunken beyond recognition with their ribs sticking out.
Often the children brought to the institution in comatose condition because of severe lack of healthcare facilities in the affected hinterlands, thus forcing these people to commute even hundreds of kilometers before the actual treatment takes place.
The situation throws a tough challenge to the doctors to take proper intervention to these comatose children. This disease does not allow much time for a doctor to treat the patient.
The survival rate of AES is rare, those who survive often become the victim of neuropsychiatric deficits with loss of mental balance. In these cases, the Electroencephalogram (EEG) is an early and sensitive indicator of cerebral involvement and usually shows a background abnormality.
A suspected AES victim is undergoing Electroencephalography (EEG). The Electroencephalography (EEG) department of BRD Medical College is one of the most busy department. The EEG is an early and sensitive indicator of cerebral involvement in cases of encephalitis and usually shows a background abnormality.
6 years old Sharif is one of the rare survivor of AES and became a victim of neuropsychiatric deficit.
Sharif became completely mute because of Global Aphasia, a post encephalitis consequence resulted due to the damage of Broca’s area (the region of frontal lobe of brain responsible for speech production).
8 Years old Nishu of Kushinagar is another rare survivor of AES, but lost her mental balance compeletely as a consequence of AES. In this process, she is frequently hurting herself badly.
Every week, Nishu along with her father Lakhan, a marginal farmer, have to commute from Kushinagar to Gorakhpur to visit the pediatric out patient department and rehabilitation centre. Kushinagar is located 53 kilometers east of Gorakhpur and taking more than an hour to commute by public transport.
No cure of the diease exist till date with a high mortality rate. The cases become more complicated because of severe lack of early intervention. Hence parents and family members have no other option except to pray and wait for a indefinite period of time for any possible (and rare) recovery.