Affected families in Muzaffarpur have much in common: low social status, low income, poor access to healthcare and the non-existent reach of government schemes

The countryside in Bihar’s north-western region of Tirhut is in full bloom at this time of the year. One is constantly in the vicinity of mango trees and litchi orchards and a good portion of agricultural land seems fallow. The sun is excessively punishing but it does little to stop life here—men are usually away at work, women adorned in colourful saris assemble outside houses and giggle, bare-chested village elders camp on and around a charpai to talk politics as grubby children play.

But the anxiety is palpable.

A mysterious malady has gripped Tirhut. Almost every village houses a family mourning the loss of a child to chamki bukhaar, or Acute Encephalitis Syndrome (AES). Biharis and their annual encounter with the syndrome—whether in person or in print—has turned it into both a verb and a noun in the local tongue: to be afflicted by it is called chamkiana, a reference to the flashes (chamak) that affected kids claim they see when the sickness latches on to them.

The before and after story of every victim is surprisingly similar. The child plays in and around the village all day. Between 8 or 9 pm, he has dinner and goes to sleep. Around dawn, he begins twitching violently, fists clenched, head shaking and teeth grinding. The worried parents arrange transport and head to the nearest doctor. Sometimes the child dies on the way; at other times, he reaches the hospital but the treatment does not save him.

The families too have identical profiles: lower caste, poverty-stricken, landless, illiterate, living in kacha houses and with kids that are half-clad and malnourished. The fathers are either peasants or labourers. The children do not go to school.

By the time Newslaundry met almost a dozen affected families across villages in Muzaffarpur and Vaishali, it became clear that AES is as much a socio-economic disorder as a neurological one.

Ragini: Gosaipur, Muzaffarpur

In a typical village in Tirhut, every caste group has a tola or hamlet. In Gosaipur in Kanti block, the Sahni tola is located at the rear end of the village. The Sahnis are Nishads—traditional fisherfolk and agriculturalists. On the way to Prabhu Sahni’s thatched hut, there is a functioning temple and a non-functioning school.

At about 9 am on June 6, Prabhu’s two-and-a-half year old daughter Ragini began convulsing. “She woke up around 8 am and asked for water. Her mother also fed her milk. She went to sleep again and an hour later began shaking strangely. So we took her and ran directly to Kejriwal [Krishnadevi Deviprasad Kejriwal Maternity Hospital],” Prabhu says.

At 3 pm, Ragini died.

Her father says, “She seemed fine the day before. Dusre bachon ke saath khel-kud rahi thi (She was playing with other kids).” The family says Ragini was “well-fed”: she had milk and bread in the morning, rice in the afternoon and two rotis for dinner. She went to sleep by 8 pm, and woke up with AES 12 hours later.

Prabhu’s brother Krishan says Ragini did not consume litchis. “In the city, we used to hear people say that litchis make children sick. So we don’t really encourage them to eat it. It’s another matter if she had it while playing with other kids.”

The Sahnis are a family of 14 living in three adjoining huts with floors made of dried mud, built upon the only piece of land they own. Prabhu has five children and is the family breadwinner along with his three brothers. While his brothers are labourers, Prabhu is a painter who finds work in and around the town of Kanti, about 20 km from Muzaffarpur. The profession finds him work for 20 days a  month, and his daily wage falls between Rs 250 and  Rs 300. Spending on travel and food leaves only Rs 200 for his own family.

But Prabhu hasn’t worked in more than a month. “My brother had a stomach operation in early May. I had borrowed Rs 30,000 from a local moneylender to pay for his treatment. Since his operation and recovery, I haven’t been going to work. And in the middle of all this my daughter also passed away.” Prabhu will be paying Rs 1,500 every month for the next two years to repay the loan.

Ragini is the first child in Gosaipur village to succumb to AES. The family spent Rs 5,000 on the day of her demise, as multiple bills show. “The hospital took Rs 1,100 after she died,” says Ragini’s mother.

“Things have been fine in the family lately, lekin dukh toh abhi bhi mehsoos hota hai (but we still feel the pain),” Prabhu says, leading me to a nearby hut where the syndrome claimed another life.

Sachin: Gosaipur, Muzaffarpur

Ten-year-old Sachin Sahni’s father died two years ago in an accident. Soon after, his mother married into another family and left the village. He had since been brought up by his extended family of two elder brothers and grandparents.

There are three women in the family and seven children. All seven of them wear shirts and underpants and no slippers. The rash on their faces point towards prolonged exposure to sweat in the region’s prickly heat.

While I talk to them, only the men sit on a wooden charpai. The women stand and the children lie on the mud floor.

The family lives in two adjoining huts made of bamboo and straw, built on their own land. The huts cover 150 square feet between them and do not have doors. In addition, they own 0.25 acres of agricultural land which they cultivate for their own subsistence.

According to Sachin’s 60-year-old grandfather, the family left to attend a wedding at about 10 pm on June 14. “Sachin wanted to come as well. I told him it’s too far and we did not take him along. That night, we returned at around 3 am and went to sleep. At 6 am, I was woken up and told that he was having convulsions.”

The family took the child to a private doctor five kilometres away. “He gave him three injections and put him on a drip. When water started coming out of his nose, he referred us to [Shri Krishna] Medical College. When we reached there at 9 am, the doctor said the boy is dead,” says Chunnu Sahni, Sachin’s 20 year-old brother.

Chunnu does not work; his grandfather and brother put food on the family’s table by working as labourers, digging borewells in Kanti. Their daily wage does not exceed ₹300 and both are illiterate. “None of the children go to school,” says a family member.

“Wo khata hi kahaan tha (when did he even eat)?” says Chunnu of his late brother. “He would have biscuit here and there and then two rotis at night.” The family says the boy seemed fine the day before. Again, he was playing around the house all day with other children.

The Sahni huts are cornered on two sides by sprawling litchi orchards. The grandfather says they’re mindful of the fact that children shouldn’t eat litchis. “Lekin dehat ka bacha kahaan baat sunta hai (But does the village boy ever listen)?” he asks helplessly.

Birju: Hariwanshpur, Vaishali

In the Manjhi tola of Hariwanshpur village in Bhagwanpur, Vaishali district, I meet the family of three-year-old Birju Manjhi. The Manjhis are Dalits. The family demography is much the same as those I’ve met before them: a few women, two of them very old; three old and irritable men whose only mode of communication seems to be shouts. Half a dozen children are busy with their own games around small huts, and there’s the additional presence of goats and their young.

Birju’s father Dilip is away in a nearby hamlet; his wife explains that he’s a landless farm worker. Their  house is built on a piece of land owned by the village’s Rajputs. In the house, two old men sit on the floor and look morosely at the distant fields that do not contain any litchi orchards.

The family’s huts are the smallest I saw in my journeys in the region. They are made of straw held shabbily together with bamboo. No one here, adults or children, can read or write.

On June 22, government volunteers came to Hariwanshpur and lectured the Manjhis about AES. They gave them packets of ORS and some medicines to ensure that their children do not get afflicted. It was the first time the Manjhis learned about chamki bukhaar. But it was too late. Birju had died of it only two days before.

“He had some food in the evening. When he slept around 10 pm, his mother fed him milk. At 4 am, he began groaning in his sleep. His fists were clenched and he was shaking,” says a visibly tired Dilip, who has just returned. The family took Birju to a local doctor who had little idea of what he was dealing with. The next doctor asked them to go to a government hospital in the town of Hajipur 40 km away. There, little Birju was “referred” to another hospital in Patna.

The ambulance, which is supposed to ferry patients to the hospital for free, demanded Rs 800 from the Manjhis. After an unsuccessful bargain, they finally zeroed in on a tempowallah for Rs 400. “He took the money first, but Birju died in the tempo,” a sullen Dilip says.

Dilip says his mazdoori earns him not more than Rs 200 everyday. He finds work only 15 days in a month. He hasn’t heard of the MNREGA. When a local leader arrives, he too appears to not know about it. “Koi kaam yahaan dega nahi toh hum karenge kaise (how will we do work when there’s no one to give it to us)?” the leader asks.

Dilip’s wife says she receives five kilograms of rations each every month for two members of the family, but the accounts have been merged into one and the ration thus halved.

“Yahaan ki sthiti dekhkar sab Dilli chala gaya. Waha suna hai kaafi paisa milta hai (People have left for Delhi after facing such conditions here. We hear they get good money there),” says one village elder. Why don’t you go too, I ask Dilip. “Jana chahte hai, lekin paisa nahi jut raha hai (I want to go, but can’t put together the money).”

Rupa: Hariwanshpur, Vaishali

The neighbouring Sahni tola in Hariwanshpur is a hamlet with 10 households. In the middle of it stands a tall tree under which sit three nurses with a table of medicines and ORS packets before them. The hamlet has earned their presence since seven children have been affected by AES here over the last two weeks. Four of them did not survive.

“She was a very beautiful and intelligent child. I still cannot get her face off my mind,” says a grief-stricken Rajesh Sahni, whose six-year-old daughter Rupa died on June 10. Rajesh is a labourer who earns anywhere between Rs 200 and Rs 300 a day.

Rajesh says his daughter went to school and also took lessons from another masterji after school. He insists that she never slept with an empty stomach. “The night before, she had food and went to sleep around 10 pm. My wife woke me up at 5 am and said that she was convulsing and grinding her teeth. Her arms were stretched and fists clenched tightly.”

Rajesh says he knew about Kejriwal hospital in Muzaffarpur thanks to his relatives. “We reached Kejriwal at 6 am. The doctor looked at her and said, ‘take her to SKMCH as fast as you can’. I reached SKMCH at 7.30 am. The doctor there asked me to go get medicine and injections for her which cost me Rs 3,000. She lost her life the next day at five in the morning.”

Even during the worst hours of his life, Rajesh says corruption did not leave him. “Rupa lay dead in my arms and the ambulance driver kept asking me for Rs100. I handed him the money from my pocket while she was lifeless. I cremated her in Muzaffarpur and then returned home.”

Rajesh says the only land he owns is the one where he has built his house. “That too because when my brother died a few years ago, we pooled money and brought it from our maalik.” He does not know about the MNREGA nor has he benefited from it.

There are no litchi orchards around the hamlet and hardly any residents inside it. “They saw kids dying in this tola and left,” he explains, leading me to a couple of houses in the neighbourhood which have either been closed off with charpais or locked with chains. In other houses, families have left the elders behind. Rajesh too has sent his two remaining children to his sister’s house in a village 10 kilometres away. “They’ll return when it rains.”

Until June 21, the tola did not even have a hand pump. The women would walk and fetch water from neighbouring villages. On June 21, however, government officials showed up and the villagers surrounded them and demanded answers to their woes. “Some anti-social elements shouted murdabad slogans. I’ve heard the press reported that we captured them.”

The local press did report exactly that. “But since then, they’ve installed two hand pumps here,” Rajesh tells me with a twinkle in his eye.

Sumit: Khirkhawan, Vaishali

Sumesh Paswan lives five kilometres away in Khirkhawan village’s Paswan tola. The Paswans are also Dalits. There are two children in the family, and both were afflicted by AES. Four-year-old Ratnesh survived, but six-year-old Sumit died on June 9.

An anxious Sumesh is hard of hearing, so his wife and neighbours have to intervene to answer half of my questions. “We used to call our son bhola. He was all right and was playing during the day, even ate one roti. But he fell ill around eight in the evening. We did not even get a chance to take him to the hospital. He died half an hour later,” says Sumesh’s wife.

The younger Ratnesh fell ill only a couple of days later. He was taken to a private hospital in Hajipur where he soon recovered. As opposed to the Rs 3,000-5,000 that other families spent in Muzaffarpur’s two government hospitals, the Paswans have spent Rs 20,000 on Ratnesh’s treatment so far.

“I had to borrow Rs10,000 from my brother. Humra paas ab paisa nahi bacha hai (We don’t have any money left),” broods Sumesh’s wife.

The family is a portrait of complete destitution. They do not own any agricultural land and are unaware of the MNREGA. The Paswans received five kilograms of rations for Rs 50 a few days ago. Before that, the last time they received rations was four years ago. Some time during the intervening years, the ration accounts of Sumesh and his older brother were merged. Sumesh says: “My brother used to say, ‘I don’t get your ration anymore’. The dealer used to say, ‘don’t come to me, go to your brother’.”

Sumesh lives in a kacha house. He used to work in a bakery in Hajipur where he made  Rs 6,000 every month. After the bakery closed down, he turned to road construction and earns Rs 300 every day—whenever he finds work. “At the bakery, they would give him food. But now he has to spend from his own pocket. By the time he returns home, we have some Rs 250 left,” says his wife.

Coda

If AES truly had been a viral and infectious outbreak, segments of populations in Tirhut’s villages might have fallen to it collectively and in larger numbers. Yet, with the sole exception of Hariwanshpur, the state government’s data shows that the syndrome is scattered and claims only a couple of lives but in dozens and dozens of villages.

People in Muzaffarpur town like to point out how none of the AES-struck kids belong to the town. “Ye sab dehat mai hota hai (All this occurs in the countryside),” they parrot with some amount of contempt. In the countryside, villagers like to state how it’s never the Brahmin, Baniya or Rajput child who falls to the syndrome. “Chhota jaat mai jaisa jeeta hai toh yehi na hoga sahab (It happens because this is how the lower castes live),” one person in a Kanti village told me.

In an afflicted household, the family is always surprised that their child died all of a sudden. He was playing all day just the day before, they claim. “We never let him eat litchis” is constantly repeated.

But the litchi story is an incomplete one; so far, we only know that a half ripe or unripe litchi might exacerbate AES, but not cause it. But in rural Bihar, it is amply evident why AES stands tall as an efficient grim reaper: it’s because of extreme economic and social poverty.

A malnourished and poorly-fed child in rural Bihar is an embodiment—not a living one because many of them are dead—of low social status, unreliable and paltry means of income, precarious housing, poor access to healthcare, illiteracy and the non-existent reach of government schemes. This is compounded by a ferocious summer which makes weak children very susceptible to heat stroke—the main symptom of AES.

This pattern repeated itself again and again in Newslaundry’s interaction with another half a dozen AES-afflicted families.

“Chamki was like a storm,” a villager called Ganesh Sahni told me as I was leaving Hariwanshpur village, “those who stood in front have been killed. I don’t know if you city people realise this, but it’s always us destitute who have to stand in front.”

www.newslaundry.com