As a mystery epidemic kills children in Bihar, we chronicle the horrors of the dead and the living from outside an Intensive Care Unit
Chinki Sinha | 19 Jun, 2014
As a mystery epidemic kills children in Bihar, we chronicle the horrors of the dead and the living from outside an Intensive Care Unit
There is a moment in the makeshift pediatric intensive care unit (PICU) at the Sri Krishna Medical College Hospital (SKMCH) in Muzaffarpur when all cardiac monitors show no digits. They go blank. There are dots, and beeps. Gasps and cries of the children inside. They are all gone, and you dread being there.
They let you in. They didn’t stop you when you walked in through that door with its blue curtains on this hot and humid June afternoon, the sky blasted white: a typical summer day in these parts. In the 1930s an earthquake altered the topography of this region, turning it into a bowl, a receptacle for water, filth and every other residue.
They even offered you a stool to sit on, and chronicle the deaths of children. In registers, the nurses have scribbled ‘expired’, as they did for Sujeet Kumar, who passed away on 16 June. The details are scanty: ‘He didn’t improve.’ That’s all there is in the last paragraph of that page in the register.
Every year, hundreds of children die. The symptoms vary. A fever, and then convulsions begin early morning. Their eyes unblinking, they stare into space, and then their eyes roll and the limbs become rigid. There is a seizure, and many die before they are able to reach a hospital. All they can be given is anti- convulsant drugs and fever medicines, depending on symptoms So far, the official toll has crossed 111.
In three days, more than 60 children have died, say the report books of the nurses in the four PICUS at SKMCH and the intelligence collated from Krishna Devi Devi Kejriwal Maternity Hospital (KDDKM) and other medical units also in Muzaffarpur. But there are many more deaths. All too often, they take place outside these temporary PICUs. This district recorded 44 deaths in 2011, 121 in 2012 and around 40 last year. The PICUs are full of small children who have been diagnosed with the working term AES (Acute Encephalitis Syndrome).
“In 1995, AES was first detected, but it was sporadic then,” says Prabhat Kumar Sinha, deputy director of the Rajendra Memorial Research Institute of Medical Science, in Patna. “Since 2008 on, the number of cases started to rise phenomenally.”
Since 1995, the mystery illness has constituted an intermittent yet nightmarish epidemic, with an average mortality rate of 30 per cent. It returns every year before the monsoon. The administration started to take note of the mystery fever and the media started to report it only about five years ago. In 2012, there were 420 deaths overall. In 2013, there was a decline; 60 deaths. But this year, the fever has struck again with all its might.
Japanese encephalitis (JE), which is different, has been recorded in Gorakhpur post-monsoon, since the 1970s. It can be found in the Malda district of West Bengal and 50, 000 children have succumbed to it in the city of Gorakhpur, in Uttar Pradesh. But Bihar’s variation of the illness is different. Both strains are incurable and feature convulsions, but Bihar’s is more acute; sometimes killing children in just a few hours and affecting the brain directly, working neurologically. Experts don’t even know if it is metabolic (related to hygiene, filth or malnutrition) or viral. The lethal health threat is speculated to be a vector- borne disease (relying upon organisms such as mosquitoes, ticks or sandflies transmitting a pathogen), causing inflammation of the brain.
“The JE virus is identified, but AES is a generalised term that covers more than 300 viruses,” says Sinha. “The issue is that you are dealing with an unknown disease. With JE, a victim is never completely cured. With AES, he can recover fully. Both start with fever and convulsion. In AES, we are detecting less sugar levels [hypoglycemia] and elevated sodium levels [hyponatremia], which makes it even more confusing. If it is metabolic, vaccination and spraying could help. But we don’t know. We have not been able to find out. In Gorakhpur and Muzaffarpur, JE and AES are dreaded epidemics. Here, the virus is yet to be identified.”
The disease, previously restricted to Muzaffarpur, has spread to six more districts. Unfortunate residents are waiting for rain, when the epidemic might subside. This year, 300 children have been diagnosed thus far. Our National Center for Disease Control (NCDC) is clueless. In the USA, Centers for Disease Control (CDC) in Atlanta, Georgia has not been able to locate the virus. Seven Indian agencies—the National Institute of Virology in Pune, units of the Indian Council of Medical Research such as Patna’s Rajiv Memorial Research Institute (RMRI), Delhi’s Safdarjung Hospital and Lady Hardinge Medical College, as well as the NCDC and CDC— are trying to decode the fever, which roams the wards of this hospital, the fields and the homes of the oblivious poor, hunting and preying. They say it is the wrath of the gods.
You watch the monitor. It doesn’t make sense. The nurses tell you it marks the pulse rate, and arterial pressure. At any rate, both are too low in the case of three-year old Mani, who is heaving as she goes. Her father Ram Bharose, who works in a brick kiln, stands next to her, preparing for the inevitable. He didn’t have enough money to pay a random car they hailed to get them to the SKMCH from nearby Motihari. The child was foaming at the mouth, and convulsions were racking her body; he knew it was time. He went to the moneylender, borrowed Rs 3,000, and eventually got his youngest daughter to the hospital. He paid most of his loan, Rs 2,200, to the driver. But the doctor says it is too late. Downstairs, the superintendent, Dr GK Thakur, says the same.
Once the death is confirmed, this man will get compensation: around Rs 50,000 for each death. Now, Ram Vilas Paswan, Union Minister of Food and Consumer Affairs, says this must be declared an epidemic. Compensation will be upped to Rs 10 lakh.
What can a poor man do? Ram Bharose knows his curse. His wife isn’t here. She is in some part of this strange hospital with its ramps sprinkled with white chlorine powder, its corridors full of sick people with their exposed wounds. A daily labourer, Bharose works in the brick kilns during the season, and was planning on going to Punjab to find a job when the fever struck. On days when he works, he gets Rs 150 per day. There are four children to feed. Most days, the children run around the litchi groves, gathering and eating the fruit.
Although doctors say there is no connection, Dr Rajiva Kumar of KDDKM Hospital says there is a cumulative effect. “The fruits that fall are picked up by these dispossessed children, and have something to do with the epidemic that returns every now and then, ravaging the poor and killing their children,” he surmises. But experts have said the litchi has no connection to the virus. We do know that it afflicts only the very poor and that the convulsions start early morning, part of the given set of data they are working with at the moment.
They’ve found a name for the anonymous disease, here in Muzaffarpur. They call it chamki, literally electric shock; referring to how its victims’ limbs grow rigid as they start to get shocks.
This is the time of the epidemic. The hospital is an inferno. The strong smell of chlorine gives you a headache.
Ram Bharose is resigned to his fate. The cardiac monitor oscillated between hope and despair. From the sixties, it would dip to the twenties, then pick up again— though never crossing the 80 mark.
Dr Arvind Kumar, who is also assistant professor here, says normal would be above 90.
“Your child is serious. She may not live,” he tells Ram Bharose. In the other corner, a grandmother is applying a wet cloth all over her granddaughter’s body.
Professor Kumar talks about early days of his medical college. They were made to sit in the morgues for a week. In those days, if they couldn’t find soap, they would just wash their hands with water, and eat.
“In medical colleges, they tell you to sit next to dead bodies,” he goes on.
We both glance at the nine cardiac monitors. The numbers show in red. There’s a constant beep sound similar to what a cheap phone might emit when its battery is dying.
“When we were young, we were emotional. We saw how valuable the child would be to the parents, and we would cry. Now, we don’t cry. So many years have passed,” he says.
Mani continues to gasp.
“If you gasp, what are the chances that you will live?” I ask.
“Not much,” Professor Kumar says.
He gets up to check on Mani. He orders the nurse to inject more anti-convulsion medicines.
“We are doctors. We become insensitive to death. You see 10 or 100, you’d still feel bad. But not when you see hundreds,” he goes on.
A team of eight doctors has been dispatched in addition to 14 other doctors who have stationed at various primary health clinics (PHCs). They work round the clock. They can be found anywhere between the two floors, running between the four PICUs. They hardly sleep. They have saved 40 per cent. Another 40 per cent have perished. A doctor says the mortality rate here in 35 per cent. At KDDKM Hospital in the town, it is 20 per cent.
The finger strip comes off Shobha’s 7-year-old hands, and for a moment, the monitor goes off.
“The convulsions are not stopping in her case,” the doctor says. He directs the nurse to check who are critical out of the nine charges in the ward.
“All could die,” she says. “This is ICU. You know what it means.”
Meena Devi is crying. Hot tears on her granddaughter’s feverish body. Her grandson Nitesh is admitted in the PHC at Motipur where they are from. The brother and the sister got the fever the same morning. The brother was rushed to the PHC first. The sister had to be referred to SKMCH. She won’t live for too long.
Meanwhile, Mani’s cardio meter shows 19/86.
“In the beginning, I used to think like many others that it was because of litchis. Today, I have my doubts. It is a cumulative effect,” says Professor Kumar. “Whatever the cause is, it is hidden. We have saved 40 per cent of those that were brought here. Another 40 per cent have expired. Earlier, the challenge was of expert doctors. Now, we have got doctors from PMCH and other medical hospitals across the state.”
The first case this year was reported on 11 April. “We have seen this disease many times. It used to be highly sporadic. We used to call it encephalitis,” he says. “I first saw it in 1995. Children used to come, and die here. Rajbala Verma used to be the DM then. She opened the state coffers, but children continued to die. Hospitals can’t do everything. This is a socio- economic problem. They don’t have toilets. They have very poor hygiene. They are so poor they can’t feed their children.”
In the same room, a mother refuses food. Her child is critical.
That night Mani dies. Early next morning, Shobha passes away. Others have died and are dying in other wards.
In Sendhwari, about 20 km from Muzaffarpur, on this side of the highway, there’s a dilapidated additional PHC with two doctors who are wiping the sweat off their faces as they work. The air is heavy. Even the leaves don’t stir. Children play outside the building with overgrown grass. There are no beds, no fans, no lights. Nothing that could save a life.
Dr Dashrath Chaudhary says Shobha was brought here, and that he referred her to SKMH. There was an ambulance that took her there. But even when he was trying to send her to the bigger hospital, he knew the chances were slim.
It is like an inferno here. He sweats profusely. The other doctor, who is on deputation until the epidemic subsides, fans himself. They both live in Muzaffarpur, and there was no electricity last night.
“It is so bad that I sweep the floor here. There are no funds. There is one chair where we treat the ill,” he says. “It is so bad that I fear I will get sick here.”
He says the mystery aside, the fever gains strength only because the children, malnourished as they are, can’t fight it. “Have you seen a rich child suffer with it?”
On the way to Shobha’s house, there’s a National Rural Health Mission (NRHM) mobile medical unit van parked on the side. A nurse wields a thermometer and takes down the temperature of the children that have surrounded her. They first made the announcement, and out came the mothers and the grandmothers with the children. For the last three days, the state government has deployed the mobile units to counter the spreading of the fever by checking the temperature of children, and telling them about AES.
Pratima Kumari is insisting the children should keep calm, and the mothers hold them so she can insert the thermometer and check their temperature. She can then write the prescription and dispatch them to PHC if they show symptoms of AES. Children are dying by the dozen, she says.
She came to these parts on June 13 from the district of Araria. “Since this morning, I have checked almost 60-70 children in these clusters,” she says. “We found five cases. Two have been referred to SKMH, and three were treated at the PHC.”
In the cluster of hutments, children with the golden hair and bloated stomachs of malnutrition run around. Nine- year-olds look shrunken, and shrivelled. They don’t grow. They have nothing to grow on. It is a dalit village, and most families are BPL; below poverty level.
Ranjit, the elder brother of the deceased, says the body was cremated this morning. The grandfather lit the pyre. This is the first-ever AES death in this village of Sendhwari in Motipur.
Shobha passed away at 5:30 am on Monday morning. On Sunday evening, her brother was taken to SKMCH because his condition had worsened.
“She was so clever. She was beautiful,” Meena Devi says.
Daini Saini, the grandfather, tries to seem stoic. But he can’t hold it in for too long. There is a moment when he wipes away the tears, and looks away.
There are no keepsakes. Just a ration card with a small photo of the grandmother with her five grandchildren. It was renewed this year. Shobha stands in the left- hand corner in a pink frock. You would have to strain your eyes to see her face.
On Juran Chapra Road, there are too many hospitals, nursing homes and clinics. Towards the end of Road No 2, and past too many clinics, lies the KDDKM Hospital, the only other institution that can provide some treatment for the sufferers of the epidemic.
It is like a bazaar out here. Inside, a compounder is trying to maintain calm. This is a charitable hospital, and upstairs, there’s a dedicated AES ward. The hospital was set up in 1960 by the first chief minister of Bihar. It is a 300-bed hospital, and according to Anirudha Mehra, the administrator, the only other one that has the courage to admit high mortality AES cases in the region.
“It is a natural calamity,” he says. “27 children have expired here. Since 3 June, we admitted 136 cases. The mortality rate is very high. It is spreading. To Champaran and to Begusaria where we recorded a death yesterday, and Sitamarhi, Vaishali and beyond.” He too says it is not the litchis.
Last year, the hospital adopted a village where AES cases were reported. The staff cleaned up the village, installed toilets and conducted workshops on hygiene. This year, no AES cases were reported from the village.
“We can only speculate. The government is panicking and doing all kinds of things. They are trying to do their bit,” says Mehra. “They announced this immunisation program but implementation remains a problem. There is no infrastructure, no monitoring, no awareness. Vaccination isn’t the solution, and there are not enough doctors. What is sad is that only the poor suffer; 50 ambulances are not enough. We have three, and we need to cater to other patients too. We operate with limitations.”
He pauses. “Loss is best explained with poetry,” he says. There is panic in his ward, and the strange calm of resignation.
In the AES ward, Dr Rajiva Kumar repeats the same theories about the suspected causes, listing the litany—“No food, no hygiene, poverty, filth”—as he moves around the ward.
On a bed, Samina Khan is sitting and applying wet towels on the prone body of her three-year-old daughter, Guliyana.
“Two children died,” she says, and points to the corner where there are empty beds. “I am afraid. I am very afraid.”
On Monday evening in SKMCH’s PICU 3, nurses are waiting for shift change. A frail woman in her twenties sits and presses her six-month-old daughter’s feet. Rinku Devi is careful not to touch the needles that are pierced into her daughter’s body here and there. Nandini is gasping. By the bed next to her, a man has fallen asleep at the feet of his daughter. Both cardio monitors are still dismal.
Prabha, a nurse, says it is difficult. They are mothers, and they understand the loss. They can imagine its magnitude, and its threat.
“We feel sad when they die. We are not like the doctors. They are different. Our training tells us to provide care, and consolation,” she says.
They also provide hope. “Many more children will come. You should take care. Ek gaya toy doosra aayega,” (If one goes, another will come).
That’s what they repeat.
But Rinku Devi lost her eldest son to AES three years ago. Her husband is a migrant worker in Imphal. He knows but he can’t come.
She is here with her mother-in-law. Her other three children are in the village that is 20 kilometres away. The child had fever for the last four or five days. Only on Sunday morning, she started to experience convulsions, and slipped into unconsciousness. At KDDKM Hospital last night, they said to take her to SKMCH because Nandini could die.
“It’s like this electric current. We treat on basis of symptoms. We are trying our best. But we don’t know what we dealing with,” says Dr Raju, one of the eight doctors called in to assist.
They say more children have died. On Tuesday morning, a woman mourns her loss with a song. The guard outside the PICU 3 wields his stick, nudges the woman, who is wailing, and pushes her away.
“I have to sit,” he says.
The husband, who sits motionlessly, looks up, and shifts slightly.
Inside the ward, a man is cleaning the remains of a life. On a lone bed, the child is lying. Dead. The father’s brother lifts her up. Her eyes are unshut. The father totters behind. Outside, the mother is still singing.
Kajal was brought in on Monday morning. That morning she woke up with high fever, and the mother fed her milk. The convulsions started soon after, and she was unconscious. But she heaved, and on and off her little body seemed to jolt as if they had plugged in a wire. They took her to a private hospital, and then got her here, before she died this morning.
She was her mother’s only child.
In this sanitised space, the poor father of an ailing child looks like an anomaly. He is easily half their size. The bones of the poor aren’t covered with layers of flesh. And the poor are also, necessarily, too grateful for what is their right.
“Medical science can’t solve all the mysteries,” says Dr Thakur. “We can only figure out three or four viruses in India. There are almost 150 that remain. We can only give symptomatic treatment. If you bring the children on time, we can treat them. But if you delay, we can’t do anything.”
The hospital has a poor record management sections. A high-powered committee submitted its report last year, and there is a protocol of treatment. The government, he says, is running an awareness campaign in the villages.
“The Asha workers have paracetamol tablets,” says Thakur. “This year, the government has equipped the PHCs to treat children. There are ambulances, and about 24-25 PHCs in the zone are on full alert with doctors doing round-the-clock duties. We are even reimbursing the fare of the vehicle in case the family had to hire a car to get the child here.”
In Ward No 2, an emergency ward on the ground floor, there are people all over the floor.
On a blue tarpaulin sheet, Nandini is gasping for breath. The mother looks on. They were asked to shift her Monday night. The doctor visited once in the morning, and the nurses don’t listen. Nandini is dying, she says. Nandini is shifted to PICU 1. She is critical.
A girl is sitting on the bed. The oxygen mask has been removed, and she dips a piece of bread feebly into an almost empty glass of tea, and puts it in her mouth. Her mother holds the glass for her. She also smiles. Perhaps, she will make it.
Her mother stands outside. On the first floor, the two men are still doling out the coarse rice, the watery dal and the potato curry of the last three days. Each family is entitled to food for two people. It is measured carefully and frugally, and is then hurled onto the shiny steel plates.
Only the poor and the dispossessed come to government hospitals. The doctors tried their best. Silently, they take the bodies and walk to the vehicle that will take them home.