Shobha Sahni thought she knew what had caused her son’s death. But seven months later, she was not so sure.
On a quiet afternoon in February, sitting at the doorstep of her one-room house in Brahmasari village, Shobha, 30, recalled how six-year-old Ayush had taken ill. “He had a fever, and then he complained of a stomach ache,” she said.
It had been late July 2021, after rains had deluged their village in Gorakhpur district, Uttar Pradesh. The flooding was not unusual. “It happens every year,” she said. “There is no outlet for the water.”
Brahmasari gets waterlogged every time it rains, and the water mixes with cow dung, human faeces – due to open defecation – and the garbage strewn all over the village. “There are dead insects in the water, and there are mosquitoes. The dirty water enters our homes where we cook food,” said Shobha. “Our kids play in the water no matter how much we try to stop them. People here fall ill a lot in the monsoons.”
It was her son’s turn last year. “We first tried to get him treated at two private hospitals – in Barhalganj and Sikriganj – but it didn’t help,” said Shobha.
Then, about a week after the fever had set in, Shobha took Ayush to the community health centre (CHC) in Belghat, which is just 7 kilometres away. There he was referred to Baba Raghav Das Medical College (BRD Medical College) in Gorakhpur, the nearest city, 50 kilometres from Brahmasari.
BRD Medical College is a state-run medical college and hospital, and the only tertiary care facility in the region. It serves patients from eastern Uttar Pradesh, the neighbouring state of Bihar and even Nepal, and claims to cater to a population of 5 crores. The hospital is often overwhelmed, and the health workers overworked.
Ayush started having seizures after arriving at the hospital in Gorakhpur. “The doctors told us he had encephalitis,” Shobha recalled. About five days later, on August 4, 2021, he was dead. “This shouldn’t have happened to him. My son was a good kid,” she said before breaking down in tears.
Encephalitis has afflicted Gorakhpur district since 1978, when the first major outbreak of Japanese Encephalitis (JE) occurred. For over four decades, recurrent outbreaks of Acute Encephalitis Syndrome (AES) have claimed thousands of lives in the region.
An umbrella term for conditions associated with inflammation of the brain, AES is a serious public health problem in India. While the Japanese encephalitis virus (JEV), a mosquito-borne virus, has been the major cause of AES, the disease aetiology includes bacteria, fungi and non-infectious agents besides a variety of viruses.
The illness is characterised by acute onset of fever, a change in mental status (mental confusion, disorientation, delirium or coma), and onset of seizures. Although AES can affect a person of any age at any time of the year, it most commonly affects children under 15 and can lead to severe morbidity, disability and death. The cases peak in monsoon and post monsoon periods.
And areas lacking in hygiene, sanitation and clean water are the most susceptible to the disease.
Brahmasari ticks all those boxes.
To be sure that Ayush had had encephalitis, we asked to see his death certificate given by BRD Medical College. “It is with my brother-in-law,” said Shobha. “Take his number and ask him to send it on WhatsApp.”
We did, and minutes later the phone beeped. The document said he suffered from acute meningitis and died of cardiopulmonary arrest. “But the doctors had told me that Ayush was being treated for encephalitis,” Shobha exclaimed in surprise. “How can they tell me one thing and write another on the death certificate?”
Baba Raghav Das Medical College had hit headlines in August 2017, when 30 children died within a span of two days after the hospital’s piped oxygen supply ran out (on August 10). The state government had then denied that the oxygen shortage caused the tragedy. Instead, it attributed the deaths to natural causes, including encephalitis, saying that an equal number of children had died between August 7 and 9.
The hospital’s high death count was not an anomaly.
More than 3,000 children had died at BRD Medical College since 2012 until the August 2017 incident. They were among 50,000 children who had died there – most of them due to JE or AES – in the three decades preceding the tragedy. The deaths in 2017 reignited an issue that had been dogging Gorakhpur, and its busiest hospital, which handles almost all of the region’s AES cases.
It has been a sore point for UP’s Chief Minister Yogi Adityanath, for whom Gorakhpur is home turf. Before becoming the CM, he had represented the Gorakhpur parliamentary constituency for five consecutive terms since 1998.
According to officials of the state health department, the chief minister took a personal interest in controlling encephalitis after the 2017 incident. “We have proactively sprayed [insecticide] in vulnerable areas to stop mosquitos from breeding,” said Dr. Ashutosh Dubey, Gorakhpur’s chief medical officer (CMO). “We have started doing the vaccination drive in April [to control JE]. Earlier it was done in June or July, which was quite late because the cases usually peak in monsoon.”
Over the past few years, CM Adityanath has been cited as saying that his government had controlled AES in the state. Data published by the Directorate of National Vector Borne Disease Control Programme back the claims.
The number of AES and JE cases reported in Uttar Pradesh has been declining consistently. Uttar Pradesh recorded 4,742 AES cases in 2017, of which 693 were JE cases. The total death count was 654 – 93 due to JE.
The state reported 1,646 AES cases and 83 fatalities in 2020. It did better in 2021, recording 58 deaths out of 1,657 cases, and only four due to JE.
The decrease in AES and JE deaths from 2017 to 2021 is a staggering 91 and 95 per cent, respectively.
Less than a month after his victory in the recent assembly elections, Adityanath said, on April 2, 2022, that his government had succeeded in “ eradicating encephalitis ” in the state.
However, as in Ayush’s case, the inconsistencies in causes of death recorded in death certificates suggest a misreporting of the numbers.
Ayush couldn’t have died of encephalitis said Dr. Surendra Kumar, officer in charge of the CHC in Belghat block, where Brahmasari is located. “I am familiar with the case you are talking about,” he said. “It wasn’t an AES death. The medical college would have informed me if an AES patient had been admitted from my area.”
Dr. Ganesh Kumar, principal of Baba Raghav Das Medical College, contradicted the Belghat CHC in-charge when PARI met him in February. “Technically, meningitis also falls under AES,” he said. “The patient is assigned an AES number upon being admitted.”
We showed him Ayush’s death certificate, which stated he had had meningitis. “There is no AES number here. There should be one,” Ganesh Kumar said, looking confused by the document issued at his medical college’s hospital.
It isn’t difficult to identify an AES patient, says Dr. Kafeel Khan. “AES is a provisional diagnosis. If the patient has a fever of less than 15 days [in duration] and shows any change [like seizures], you can assign them an AES number. You don’t have to do any tests. That’s how we worked until the August 2017 incident,” he explained.
Khan was on duty at BRD Medical College hospital on August 10, 2017, the day that 23 children died there. Following the incident, he was accused of dereliction of duty and suspended by the UP government. He was then arrested for medical negligence, among other charges, and jailed for seven months until his release on bail in April 2018.
He believes he was made a scapegoat after the 2017 tragedy. “I am being denied my job because the hospital is manipulating data,” he said. The UP government terminated his services as a lecturer of Paediatrics at BRD in November 2021. He has challenged the move in Allahabad High Court.
AES cases are being listed as Acute Febrile Illness (AFI) to show favourable numbers, Khan said. “But AFI has no brain involvement. It is just a high fever.”
The district’s CMO, Ashutosh Dubey, denies any misreporting. “Some AFI cases can be AES cases,” he said. “Which is why the cases are first investigated and grouped accordingly. But not all AFI cases are AES cases.”
Acute Febrile Illness can progress to Acute Encephalitis Syndrome, and both illnesses share some aetiology, including a bacterial infection called scrub typhus. The infection has lately been identified as a major cause of AES outbreaks in Gorakhpur region – studies in 2015 and 2016 assessed that scrub typhus was responsible for over 60 per cent of AES cases.
It was only as recently as in 2019 that BRD Medical College started tracking Acute Febrile Illness as a separate illness category. But neither Dubey nor Ganesh Kumar was forthcoming with information about the numbers.
AES is characterised by acute onset of fever, a change in mental status, and onset of seizures. Although the illness can affect a person of any age at any time of the year, it most commonly affects children under 15
However, PARI was able to access the list treated at the medical college that year. The numbers peaked around the rainy season, just like AES and JE. (Dengue, chikungunya and malaria are among the infections that lead to AFI.) Out of a total 1,711 AFI cases in 2019 at BRD Medical College, 240 were reported in August 2019, and 683 and 476 cases were recorded in September and October, respectively. But not a single case was admitted in the first six months of the year.
Some of this data was first published by the journalist Manoj Singh on his website , Gorakhpur Newsline , in late 2019. Singh, who has been reporting about encephalitis cases in BRD Medical College for a long time, said, “If the hospital has nothing to hide, why are they not releasing numbers like they used to?” He also pointed out the JE cases listed among AFI patients in the 2019 list – 288 out of 1,711.
However, only 235 JE cases had been recorded in all of UP that year.
“It is possible that some of the 288 patients [at BRD] didn’t belong to UP, as the medical college receives patients from western Bihar and Nepal as well,” Singh said. “But the majority of cases are from the state [UP]. So the numbers raise doubts.”
Ganesh Kumar, principal of BRD Medical College, said: “It is tough to tell the exact number of cases from Bihar and Nepal,” but they are usually “not more than 10 per cent”.
This increases the concerns about misreporting and undercounting of AES cases.
The consequences of treating an AES case as AFI are far-reaching. “The main difference between AES and AFI treatment is a medicine called mannitol, which stops brain inflammation. The moment this medicine is used, the case has to be categorised as AES,” said Kafeel Khan. “Treating an AES patient as an AFI case would mean not using mannitol. And if you don’t use it, children [with AES] will end up becoming disabled for the rest of their lives even if they survive.”
The family of an encephalitis patient can’t apply for government compensation without the AES number assigned to the case. In the case of death, the family is eligible to receive Rs. 50,000 from the state, and a survivor gets Rs. 1 lakh, as many struggle with long-term health consequences of encephalitis.
AES mainly strikes neighbourhoods of the poor and marginalised, who need the compensation the most.
Shobha is among them.
Before taking Ayush to BRD Medical College, she had spent a total of Rs. 1 lakh on his treatment at the two private hospitals. “We borrowed money from our relatives,” said Shobha, who belongs to the Nishad community, listed among the Other Backward Class in UP. Ravi, her husband, runs a small clothing store in Mubarakpur town in Azamgarh district, about 75 kilometres away from their village. He earns about Rs. 4,000 per month.
Had Ayush been assigned an AES number, Shobha could have at least repaid her brother-in-law. “My brother-in-law had saved Rs. 50,000 for his studies. We had to use that too.”
The family owns less than an acre of farmland, where they cultivate wheat for self-consumption. “We only take one crop a year because our land is flooded during the monsoons,” said Shobha, while operating the hand water pump outside her home in Brahmasari.
About five kilometres from the village, in Belghat gram panchayat , 26-year-old Karambir Beldar remembers he kept asking the doctors at the BRD college hospital for a diagnosis of his niece’s condition. But no one answered him – not even after she died.
His five-year-old niece, Riya, had caught a fever in August 2021, and she then had seizures. “The symptoms were similar to AES,” he said. “It was the monsoon season and contaminated water had filled up around our house. We took her to the CHC immediately, where we were referred to BRD.”
Riya was admitted to the hospital’s infamous paediatrics ward. “We asked the doctors what was wrong with her, but we were never told,” Beldar said. “They kicked us out of the ward whenever we asked questions. A staff member asked me whether I was going to treat her.”
A day after she was admitted to the hospital, Riya died. Her death certificate cites ‘septic shock crush failure’ as the cause of death. “I don’t even know what it means,” said Beldar. “What’s the reason for secrecy? The death certificate may not mention anything about encephalitis, but kids are dying every year.”
That is what Shobha fears.
Ayush is gone, but she worries for her younger sons, Rajveer and Kunal, 5 and 3. Not much has changed. Their village is likely to be inundated during the monsoons this year – the water will get contaminated, and she will have to use the dirty groundwater drawn from the hand pump. The circumstances that took Ayush’s life remain a threat to his younger siblings. And Shobha knows the consequences better than anyone else.
Parth M.N. reports on public health and civil liberties through an independent journalism grant from the Thakur Family Foundation. The Thakur Family Foundation has not exercised any editorial control over the contents of this reportage.
This story first appeared on Rural India Online.