Harbanshpur village in Bihar’s Vaishali district is a reflection of what the death of over 100 children has done to the landscape in and around Muzaffarpur. Deaths of at least six children from this village due to Acute Encephalitis Syndrome (AES) have sparked an exodus of sorts. Some families have abandoned their houses for now and plan to return only when AES cases subside. Villagers claim 17 families have left their homes so far.
Those who couldn’t migrate themselves have sent their children away to their relatives’. And those who couldn’t send their children away are anxious and fearful; Reena Devi is one of them. She lost two sons to AES. Sitting outside her small kuccha house in Harbanshpur, Reena Devi is attentively listening to the state health officials who are on the rounds distributing ORS sachets and spreading awareness about AES.
She loses focus only when her five-year-old son Ayush tries to wriggle out of her lap. When Ayush insists, she spreads a cloth on the floor and makes him sit on it. “He is the only one left now. I won’t be able to live if something happens to him,” says Reena Devi.
When the health officials ask her if she has a toilet, Reena angrily responds, “No house in this village has a toilet. We don’t have money to eat and you expect us to build toilets.” Like Reena’s house, most of the families TNIE visited did not have toilets.
Reena breaks into tears as she narrates how she lost her two sons to AES on two consecutive days. Her eldest one Prince (7) succumbed to it at Sri Krishna Medical College and Hospital (SKMCH) in Muzaffarpur on June 7, and her youngest son Chotu (3) breathed his last at Patna Medical College and Hospital a day later.
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“They both suddenly fell ill -- first Prince and then Chotu. When we were doing the last rites of Prince, Chotu started getting convulsions. We left Prince’s body and rushed to the primary health centre which referred Chotu to PMCH. The hospital did nothing to save him.”
Reena’s husband Chatur Saini, who is a labourer, says PMCH didn’t even give them an ambulance to get Chotu’s body home. “We are poor. We don’t have resources but we rushed both of them to hospitals somehow. I spent whatever I had but still couldn’t save them,” says Chatur.
Chatur’s neighbour Rajesh Saini has also lost his 8-year-old daughter Rupa Kumari to AES in SKMCH on June 9. Rajesh has sent his other children - two sons - to his sister’s place in a nearby village. The fear of the “mysterious disease” is so prevalent that Rajesh did not even bring Rupa’s body to the village. “Too many children have died already. I didn’t want the disease to spread. We performed Rupa’s final rites at my in-laws’ village in Dumrigarh.”
Living in fear
The fear of AES is not just palpable in Harbanshpur. From across North Bihar in as many as 16 districts AES cases have been reported. Labourer Chulhai Ram of Manika village is among the unfortunate, but a growing lot of, parents who lost their children to this tragedy. Just like the other parents in his position, Ram thinks the administration is to be blamed for his loss.
As he sits to eat and make his two-year-old son eat along with him, a swarm of flies hover around him.
Recalling the day when he lost his toddler, Ram says, “We rushed her to the block hospital in Mushairi but they did not give her any treatment. We had to wait for hours to get an ambulance that finally took her to SKMCH. Her condition worsened in the ambulance. Within hours of reaching SKMCH, she was declared dead.”
Fatalities on the rise
While deaths in hospitals due to AES have been documented, in many cases where children could not be brought to hospitals in time such fatalities remain unaccounted for. In Shahbazpur, for instance, Kiran Devi lost her one-year-old Shivani to a suspected case of AES. “She suddenly got high fever and convulsions. The symptoms looked like that of “Chamki” (local name for AES). We were rushing her to the hospital but she died on the way.”
Mystery disease
Kiran claims that no Accredited Social Health Activists (Asha) workers - who are supposed to run awareness campaigns in villages against the outbreak of AES - visited her home until two days ago.
Since the root cause of this disease is still a mystery, precaution and containment of the disease is the only steps that can be taken for now, experts say. The Bihar government had prepared a Standard Operating Procedure (SOP) with UNICEF after AES claimed at least 117 lives in 2014.
The SOP included many important steps. For instance, according to the SOP, Asha workers are directed to undertake a survey of villages in order to identify such patients. They are directed to provide ORS to the affected families and ensure that no child in the village sleeps hungry. Apart from this, there are provisions for a number of basic amenities in primary health centres.
An Asha worker from Minapur block said she has been meeting families regularly to create awareness about prevention of AES and that she was working overtime to distribute ORS sachets. She however, added that ASHA workers got the sachets only a few days ago. “How do I distribute sachets from May if I get them only in June? Also, we received few packets initially and were unable to give it to all in danger. We are doing our best to educate people to keep their children indoors, bathe them daily and give them proper meals. Our job is to advise them. It is up to the people to decide if they want to listen to us,” said Leela Devi (name changed).
The Litchi connection
Mustafapur village resident Ali Hussain who lost his three and a half-year-old daughter to AES said that he got an ORS packet from an Asha worker for the first time only on June 19, six days after losing his child.
Like most victims of the tragedy, Hussain is a Below Poverty Line (BPL) card holder but unlike most others, he has a toilet at his house. His house is surrounded by orchards of litchi. Several theories explaining the epidemic have connected the death of children from AES to the consumption of litchi. Hussain, however, does not agree. Muzaffarpur - the epicentre of AES, is known for its juicy litchis that ripen in the same summer months as the outbreak of AES.
“I don’t think all children who died consumed litchi. Had the government been better prepared, many children could have been saved. When we took our daughter to SKMCH, no doctor paid any attention to her for hours. Next day, she died.”
No water or toilets
Many children have fallen sick in Jalalabad village too where small unclothed children can be seen playing outside their thatched houses to escape the scorching heat. Sunaina Devi - who lost her three-year-old grandson Prahlad - can barely speak between sobs. “There is no facility in the village here. He was first rushed to the Primary Health Centre but that was shut in the morning. It opens at 11 am. We rushed him to SKMCH where he was kept in ICU.
They said we should have reached the hospital before.” Prahlad’s mother is in tears too. “We are helpless. We try to keep the children indoors but it’s very hot and they want to run around. There is no electricity, no water, and no toilet in our village.”
Save our Kids
While authorities are grappling with the humongous number of patients being wheeled in daily, ICUs have run out of beds for the patients. As many as three patients are sharing a single bed at the SKMCH in Muzaffarpur. The hospital converted the prisoners’ ward into a special ward to handle AES patients.
Heat is definitely a factor which leads to AES
TNIE reported on June 20 that awareness campaigns were not carried out this year owing to Lok Sabha polls. The Asha workers were engaged for poll duties rather than their actual duties. The SOP was reportedly followed over the last three or four years - which brought about a decline in such cases. Statistics from Bihar’s health department show that the disease claimed the lives of 15 children in 2015, six in 2016, 11 in 2017, and seven in 2018.
Senior paediatrician Dr Arun Kumar Thakur who co-authored the SOP said when the exact cause of the problem is yet to be ascertained, the only solution is preparedness. “Were we prepared this time? I don’t think so. The SOP needs to be followed every year. In 2014, we went to all areas where this disease could be a possibility. Water and Sanitation are very important in the areas. Has the condition improved in these areas since then?”
Thakur added that enough space needs to be created in hospitals and that the SKMCH - which is the headquarters for at least 12 districts - was severely hard-pressed. Dr Thakur said the heat is definitely a factor which leads to AES. “This becomes an epidemic in every 3-4 years. Last year, the temperatures were not so high so the cases were less. It is usually when temperatures go above 44 that we see this sort of situation. The hospital needs to create enough space. They need to have AC wards for these patients.”