Four years ago, doctor and medical photographer Kaushik Ghosh tracked and photographed children with encephalitis at the Baba Raghav Das Medical College hospital for two months during the monsoon of 2013. He documented the overcrowded wards, the poverty and malnutrition of the victims and the physical and mental struggles of their parents. He saw children struggling to breath, children who lost the ability to speak and children who died. All this in the hospital that is supposed to be best equipped one among all hospitals in Uttar Pradesh to handle encephalitis and even has a ward dedicated to treat these cases.

On August 10 and 11 this year, as many as 72 children died at the hospital even as there was a disruption of oxygen supply at the hospital. Many of these children had acute encephalitis syndrome, which is a general term for inflammation of the brain and can be caused by a number of different factors including the Japanese encephalitis virus, enteroviruses and scrub typhus.

Immediately after the sudden spike in deaths, both the hospital and state administrations admitted that there was an oxygen supply disruption but denied that it was linked to the deaths. Since then, three different inquiry committees investigating the deaths have come to three different conclusions.

A three-member committee instituted by the central government visited the hospital and said that the deaths of the children were not caused by the disruption of oxygen supply. Another report by the district magistrate of Gorakhpur has remained silent on whether the oxygen supply disruption played a role in the deaths. However, it blamed the medical college principal, the head of the anaesthesiology department and the oxygen vendor responsible for the possible life-threatening shortage of oxygen. The report pointed out anomalies in record maintenance with respect to the liquid oxygen supply system and cylinders.

The third report was from an independent inquiry conducted by a three-member committee instituted by the Indian Medical Association. This report also does not mention the causes of death. “It was the beyond the scope of the committee to find out the cause for these deaths and we have left it for the authorities to inquire,” said Dr KK Aggarwal, president of Indian Medical Association.The association has held the medical college principal and the head of paediatrics “responsible for this situation” and criticised the general quality of care provided at the hospital. Aggarwal urged the government to airlift the sick children to better equipped hospitals. “Children are still dying at that hospital,” he said. “We can at least save them.”

Long history of suffering

Acute encephalitis syndrome has been endemic to Uttar Pradesh for four decades after the first outbreaks of the condition occurred in the late 1970s. Since 2010, there have been about 3,000 cases and 500 deaths in the state due to encephalitis every year, according to data from the National Vector-Borne Disease Control Programme. The Gorakhpur division is classified as “highly endemic” for encephalitis, with people from eastern Uttar Pradesh, Bihar and even Nepal coming to the Baba Raghav Das Medical College in droves for treatment, especially in the monsoon months.

Ghosh recalled his first day at the hospital in 2013 when he met a father of a young boy who had a suffering case of encephalitis. The boy had all the tell-tale signs of the condition – fever, convulsions and disorientation. “I spoke to his father, who had come from a far off village, while the doctors admitted his son,” said Ghosh. ““ [The next day] I was shocked when I was told that he died.”

He describes this as his first encounter with this endemic emergency.

In the epidemic ward, some children strain to breathe even when they are on ventilators. Many are shrunken with their ribs sticking out.

Ghosh saw many similar cases where children were brought to the hospital near-unconscious and they would be declared dead within a few hours of hospitalisation. “I saw a team of dedicated doctors and nurses who were trying.”

The corridors, paediatric and epidemic wards are crowded with parents of children being treated for encephalitis.

Ghosh then travelled to the nearby Kushinagar, Gopalpur and areas near the Nepal border where the encephalitis cases are frequently detected. “The [bad] roads and the long distance to the hospital ensured that the children took longer to reach the hospital,” he said.

Pigs, which are reservoirs of the Japanese encephalitis virus, are found everywhere in the district including in the hospital surroundings.

He met parents who were daily wage workers and were stuck in the dilemma of either to take the children to the hospital or go to work so that the family does not go hungry on that day. “Imagine, they are earning Rs 300 per day and how would they pay the van ambulance driver who is demanding a few thousands to transport their sick child to the hospital,” he said.

The lack of proper transport and the absence of good primary healthcare in the hinterlands of Uttar Pradesh have been compounding the problem of child deaths. Ghosh also observed that mothers even if they knew that their child was sick had to wait for their husbands to return from work to take the decision to take the child to the hospital. “Also most children are malnourished and hence having very little immunity to fight any infection, making them easy victims,” he said. Ghosh was never able to complete his documentary project due to lack of funds.

A boy suspected of having AES undergoing an electroencephalopathy (EEG), which indicates cerebral involvement in cases of encephalitis and detects background anomalies. Many survivors of AES develop neuropsychiatric deficits and loss of mental balance.
Six-year-old Sharif became completely mute due to global aphasia after an encephalitis infection damaged the Broca's area of his brain, which controls speech.
Eight-year-old Nishu lost her mental balance after an encephalitis infection and, as a result, frequently hurt herself.

Gorakhpur remains a mystery for the medical community as several efforts to control the spread of Japanese encephalitis through vaccination and control of mosquito breeding sites have not yielded significant results.

As Ghosh’s experience shows, the combination of a stubborn disease, the lack of proper healthcare and sanitation, apathy of government authorities and an overburdened public hospital is responsible for the continuously high death toll among children in Gorakhpur.

A father prays during what feels like an indefinitely long wait for his child's recovery.

All photos by Dr Kaushik Ghosh.