While there is a debate over the cause of children’s deaths in Gorakhpur, encephalitis continues to play havoc as sanitation problems remain unsolved.
There’s a flurry of activity around the hospital bed as the monitors beep wildly. One can feel a sense of urgency even though the proceedings are on the other side of a large glass window. A doctor and a nurse work frantically as three others watch. Then the beeping stops. And the staff moves on to the next bed.
A young man, possibly in his twenties, in a bright red round-neck tee moves to the foot of the bed and one of his companions to the head. Together they lift the patient, a girl not yet 10, turn her onto her back and cover her with a sheet. The third man, in a blue shirt and a red gamchha, or cotton towel, thrown over one shoulder, stands still, staring at the bed; his expression is blank, his gaze seems to travel, but doesn’t seem to register anything.
It’s an expression you become well acquainted with in the corridors of Baba Raghav Das (BRD) Medical College in Gorakhpur. Parents stand around helplessly as children, some as young as eighteen months, lie comatose, eyes shut, faces all but obscured by the Ryle’s tube that carries food through the nostrils into the stomach. The keening of a child occasionally cuts through the hubbub in the encephalitis ward where the faces of the bystanders wear a haunted look.
The BRD Medical College draws patients from across Uttar Pradesh (UP), Bihar and even Nepal. Spread over a sprawling campus in Gorakhpur in north-eastern Uttar Pradesh, as a tertiary care centre, it is not unaccustomed to tragedies, especially in the rainy season because various vector-borne diseases such as encephalitis, dengue, malaria, etc., are common then.
Even so, what unfolded here in the second week of August is unprecedented.
More than 70 children have died in this hospital since 9 August. Attendants of patients say the tragedy occurred due to a possible disruption of oxygen supply over non-payment of dues. The Uttar Pradesh government vehemently denies this, insisting that encephalitis, an infection that causes an acute swelling of the brain leading to high fever, coma, seizures and eventually death, is the culprit. It is an annual scourge not just in Uttar Pradesh but also Assam and West Bengal.
As soon as one enters the imposing gates of the BRD Medical College campus, one encounters a bright sign in Hindi, asking encephalitis patients to report to ward No 12. It’s a long walk, especially as one has to pick one’s way through the families camping in the corridors – sleeping, drying clothes, reading newspapers or eating.
Vipin Singh, a farmer from Kushinagar district, ran through these corridors on 10 August as his six-year-old daughter Aarushi lay comatose in his arms. She had been suffering from high fever for two days and the local doctor had advised that she be rushed to BRD Medical College. Singh’s village is more than 60km away from Gorakhpur and the only vehicle the family owns is a two-wheeler. He dialled 108 for emergency medical services to ask for an ambulance on the morning of 9 August but was told that none was available. An ambulance was finally sent the next day and she was admitted to the hospital.
“Naak aur munh pe tube lagaya,” (they inserted a tube in her mouth and her face), he says. She wasn’t conscious but she was breathing. Then, on the evening of 9 August, children started dying.
“We weren’t paying attention, everyone was sick,” recounts Singh, staring into space like Bahadur, another father interviewed by Mint earlier. “Then we were told the same thing, that our child was no more.”
Singh is holding two photographs of Aarushi. One from when she was two years old and one clicked in the last winter. He wants you to look at them even as his wife stands behind the door, face completely covered by her ghungat (veil). She refused to speak with Mint. He heard about the oxygen shortage only much later when it became clear that the series of deaths in the hospital was more than just a horrible coincidence. Colloquially, encephalitis is known as mastishk jowar (brain fever), but Singh says he has never heard of it: “We know about dimaagi bhukhar, par Aarushi ko kya hua samajh hi nahi paaye (we could not understand what happened to Aarushi).”
According to officials at the BRD Medical College, 77 children have died of acute encephalitis syndrome (AES) in Gorakhpur since 9 August.
The disease encephalitis, which includes Japanese encephalitis (JE) and AES, first made its appearance in the BRD Medical College in 1978. It was the last week of July and Dr K P Kushwaha, who retired as the head of paediatrics from BRD Medical College in 2015 and now runs a private practice, was a 24-year-old resident doctor then.
“It was a very sad phase, there were so many deaths. Patient after patient kept coming into the hospital, each with the same symptoms. It would begin with high fever, lead to seizures and coma. We did not have IV lines so we would make catheter from tubes fashioned out of polythenes, heat it, put it in the boiler.”
Dr Kushwaha puts the death rate at that time at almost 60 per cent. Medical teams from Lucknow Medical College and National Institute of Biologicals came down for brain biopsies. It was then that the JE virus was isolated and the real cause of the epidemic identified. A flavi-virus, JE virus spreads from pigs through mosquito bites.
“Not everyone who gets bitten by an infected mosquito contracts the disease. In a village 300 people may test positive for JE but it is only in one or two people that it actually takes on a deadly form,” says Dr Kushwaha. According to the World Health Organization, 24 countries in South East Asia and Western Pacific Regions have endemic JE virus transmission, exposing more than three billion people to risks of infection.
According to Dr Kushwaha, political energy, from 1978 till 1984, was spent not on ways to tackle the outbreak but to actually deny the presence of the virus. There were a few political promises along the way, of a medical research centre, of more beds, etc. But they led to nothing. By 1986, a change of pattern was noticed as the disease started affecting children much more than adults. Even today, children between the ages of two and 15 remain the most vulnerable to AES.
“Every year, come the monsoon season and my staff and I were rushed off our feet. We did not have an oxygen supply pipeline so we used to lug heavy cylinders through the corridors. I had a team of 8-10 people to handle all that would unfold around us. We were horribly understaffed and low on resources. Two to three children would share a bed,” recalls Kushwaha.
In 2004, at the behest of the state government, funds were sanctioned for cylinders and ventilators, but it would take a tragedy in 2005 before the issue of vaccination was even seriously considered. Gorakhpur and its surrounding districts witnessed over 6,061 cases that year and over 1,123 deaths were reported.
“The disease was playing havoc in the last few decades but now we have put in major efforts and the situation in UP has improved. We introduced a one-time vaccination in 2006, then we did a round of vaccination in 2010. And from 2011 the JE vaccine has been included in the Universal Immunisation Program,” says Dr Soumya Swaminathan, Secretary, Department of Health Research, Union Health Ministry and director general at Indian Council of Medical Research.
However, even as the vaccination drive brought down cases of JE, cases of AES have risen. In 2017, the country has so far registered over 5,926 AES cases, with the highest number reported in Assam (1,534), followed by UP (1,208) and West Bengal (826).
“AES is a group of clinical neurological manifestation caused by wide range of viruses, bacteria, fungus, parasites…,” explains Dr Pradeep Haldar, Deputy Commissioner, Immunisation at the Union Health Ministry. AES’s symptoms also include high fever, inflammation, convulsions and even paralysis. It cannot be prevented by vaccines.
“Thirty percent of those who contract the disease will die. Thirty percent of those who survive will be permanently affected. They will be either paralysed or have neurological issues,” says Dr R N Singh, a Gorakhpur-based medical practitioner who has been working to eradicate the disease for some time. Singh makes detailed diagrams to explain his points.
Malnourished children and those from the weakest sections of society are the most at risk to JE and AES. Since its outbreak in 1978, more than 25,000 children have died due to AES in Uttar Pradesh.
Sooraj, who uses only one name, is a daily wage labourer from Kushinagar. He is in BRD with his four-year-old son Manjesh, who is sitting in his mother’s lap, staring into space. His father gets testy as he answers questions. Does he know what his son is suffering from? Yes, he snaps, “I have an older son at home, six-and-a-half-year old Anikesh. He too had the same symptoms. He survived, but his entire right side is paralysed. We live hand-to-mouth and I am staring at a future with two disabled sons, so I know what ails them.” The haunted expression is replaced here with anger and anguish. Sooraj doesn’t know if his children were vaccinated.
But vaccination, as Dr R N Singh explains, is not a magic bullet. Gorakhpur in Uttar Pradesh and the country at large is plagued by sanitation and hygiene problems resulting from open air defecation and contaminated water supply which makes the population susceptible to entero virus encephalitis. “Open defecation in the region remains a challenge and as such fecal matter finds its way into drinking water. There is no vaccine available for entero virus encephalitis and as such it can only combated with sanitation and the usage of toilets,” says Dr R N Singh.
In fact, Uttar Pradesh Chief Minister Yogi Adityanath blamed open defecation rather than interrupted oxygen supply as the main reason for the deaths in BRD Medical College this month. “This region is known as terai, essentially low lying areas that are prone to flooding. It is also very fertile for the cultivation of dhan. All these factors lead to accumulation of water bodies, especially during the monsoon. We have been asking for hand pumps, etc, to ensure that at least the drinking water is safe,” says Dr R N Singh.
In village after village, public health instructions have been written on walls on how to keep encephalitis at bay. The main among these is to drink hand pump water only. General directions of cleanliness to keep mashtisk jowar at bay make up the rest. “Yes, there are instructions painted everywhere, but we’ve never had a concentrated effort to change mindsets and tackle the disease. This requires concentrated efforts by the government. You need volunteers who go from village to village spreading awareness, changing habits, encouraging cleanliness. I don’t see that happening,” says Dr Kushwaha.
Adityanath is a five-time member of Parliament from Gorakhpur since 1998. He has raised the issue of encephalitis several times in Parliament, including in 2005 when the disease had taken several lives. It is an issue which is reportedly very important to the Chief Minister – but will it lead to the required steps being taken? On 13 August, Union Health Minister J P Nadda announced the establishment of a research centre in Gorakhpur at a cost of Rs 85 crore to look into the disease. It’s another matter that the proposal for this facility has been pending with the state government for some time now.
Inpatients at BRD Medical College speak about being made to buy everything from cotton gauzes to syringes and children sharing beds three to one. Facilities are abysmal and resources near nil. “Several hospitals in Uttar Pradesh such as BRD Medical College are suffering from overburden of patients. They get far too many patients beyond their capacity to handle. We need to work out a plan and strengthen the periphery of more medical facilities in the state,” says Health Secretary C K Mishra.
For almost four decades now, the children of some of the poorest and most disenfranchised people in the country have been dying because of an abject failure of governments and bureaucracy.
The haunted look of the people in the corridors of BRD Medical College indicate not just their grief but also that this region, marked with excessive poverty, has been all but forgotten by a nation eager to become an economic superpower.
Neetu Chandra Sharma contributed to this story.