This is the second part of a two-part story which profiles Manju, a Dalit woman in Uttar Pradesh, who gave birth to triplet boys in a public hospital. In the previous part, we saw how neglect in a poorly functioning health system brought the middle triplet to death’s doorstep. The manjala-wala was slowly loosing his grip on life….
There are ways in which parents can avoid such situations, but once a baby has become so weak there is little a family can do on their own. Rehydrating an unresponsive baby and dealing with neonatal jaundice requires a trained doctor. By the time the manjala-wala fell sick, Sateesh had not gone to look for day labour, the family’s main source of income, for several weeks because Manju could not manage three newborns and three older children on her own. They had run out of money and had exhausted their borrowing options from friends and neighbors. Thanks to charitable donations, the manjala-wala was taken to a well-functioning, but expensive hospital run by Christian missionaries near the district capital.
“The baby is too lethargic and is not responding, what in this world made you wait so long from taking him to a hospital? His chances of survival are grim. Go sign the consent form and submit the fees at the counter,” a young doctor told Sateesh when he arrived. The baby was admitted to the hospital’s Neonatal Intensive Care Unit (NICU) where he received milk from a feeding tube, some antibiotics, and several sessions of triple phototherapy. Sateesh was surprised by how involved and active the nurses were in terms of their hands-on approach to giving the babies medicine, given the hostile staff he’d met at the public hospital. He also noticed that the missionary hospital was much cleaner than the public hospital.
The next morning, the doctor told Sateesh, “He is doing well. His body responded well to the treatment. We will keep the baby for one more day in the NICU and then you can take him home.” After a two-day stay at the missionary hospital, the manjala-wala was discharged, but the underlying cause of the jaundice remained unaddressed. He would need a very careful feeding regimen, which the nurses explained only cursorily. Indeed, both private and government health providers in India are generally more concerned with cure-oriented health care and often overlook the benefits of preventing disease. They explain little, leaving patients unaware of how to prevent future illness.
The manjala-wala was still too weak to start feeding directly from his mother’s breast, so paladai or spoon feeding, which helps the baby save energy which otherwise he would invest in sucking his mother’s breast, was the only way to feed him.
“Although hand expressing the milk out of my breast sometimes caused pain but the worth of my child’s life outweighed the pain,” says Manju. She continued feeding the manjala-wala baby her expressed breastmilk using a paladai for fifteen days, until he had regained the strength to latch on her breast.
Perhaps the manjala-wala baby’s brush with death could have been prevented if any of India’s large network of health workers – the ANMs, the ASHAs and the Anganwadi workers – had visited in the days after birth. Although village health workers have been important in improving immunization coverage, they rarely provide much-needed advice on breastfeeding, hypothermia, nutrition, and hygiene.
Indeed, the first time the ASHA in Manju’s village visited after the triplets’ birth was when they were already a month old. She was there not to check on them but to inform Manju about the ANM’s visit for immunization.
In several years of field work in rural north India, I have often heard villagers say, “sheher ke dawa aur dehat ke hawa ka asar barabar hota hai.” That is, “the city’s medicines are equal in impact to the village’s air.” It is true that outdoor air quality in villages is better than the outdoor air in cities; I have often seen the blue skies in rural areas whereas they are near-impossible to see in Delhi. But due to the widespread use of chulhas, indoor air pollution in rural India can be much worse than the pollution in Delhi, the most polluted city in the world.
Traditional chulhas, which burn wood, dung cakes, or other forms of biomass, create smoke that contains fine particulate matter, which causes respiratory infections, especially in infants. Respiratory infections are the leading cause of death among children over one month old in India.
A study conducted in 13 districts of the Bundelkhand region in Uttar Pradesh and Madhya Pradesh found that the houses with chulhas had average levels of PM 2.5, a particularly dangerous form of particulate matter, of over 520 µg/m³, which is more than 8 times worse than what the government considers safe. Moreover, the study also found that in the evenings households had PM 2.5 levels as bad as 4140 µg/m³!
Although there are important price and supply side constraints in getting LPG in rural India, attitudes and beliefs may play a role as well. In a recent survey of over 3200 families conducted in five north Indian states, one of which was UP, we found that over 82% of the families falsely believed that cooking food on chulhas is better for health than using kerosene or LPG.
Like so many other families in rural Uttar Pradesh where, according to census 2011, 92% of rural households cook on chulhas, Manju and Sateesh also bake rotis, cook rice, and make dal by burning cow-dung cakes and wood. Their house has one room, and when I first visited them there, the chulha was kept inside the room in a corner. Once they learned about the relationship between smoke and respiratory infections, they happily shifted the chulha outside. They were also enthusiastic about preventing disease by washing their hands and keeping dirty diapers in a covered bucket so that flies could not bring the germs on them to their babies’ mouths. When I asked Sateesh why people in villages do not normally do these small things to improve health, he said, “We are village people, we are not aware; all that we know was passed down from our ancestors. These are simple things but one cannot expect us to know them without being told.”
The government has been making little effort to teach people about ways to prevent diseases in children. In fact, the approved budget outlay for Information Education and Communication, which is supposed to disseminate behaviour change messages under the National Health Mission, is only INR 160.18 cr for the year 2015-16. This is even less than what the government set aside for a statue of Sardar Vallabhbhai Patel!
Similar to the health benefits of food cooked on chulhas, there are several other fallacies which are ubiquitous in rural India. Traditionally, new mothers are asked to avoid drinking too much water and other foods that are considered to be cold. People think that doing so will save the mother from catching cold, which may get transferred to her baby through breast milk. Instead, they believe, she should consume hot foods to speed up recovery after child birth.
In earlier times, women were advised to fast for the first few days after delivery, and were often allowed to eat only Panjeeri, a homemade mix of spices, dry fruits and jaggery. Panjeeri does no harm for the rich, but for the poor it siphons off money they could use to buy more nutritious, inexpensive food for mothers.
“Some amount of dirty water [amniotic fluid], remains in a new mother’s body after delivery. To dry this unwanted water one must eat panjeeri and avoid other food for some time, not doing so would have bad impacts on the mother,” said Ballu, Manju’s father-in-law, who borrowed some money from a neighbor to make ‘panjeeri’ for Manju.
Cultural practices of not letting new mothers to eat and drink enough after delivery, and just relying upon panjeeri for calories causes dehydration and hunger. A dehydrated and hungry mother has a harder time establishing an adequate milk supply for her baby and is often forced to supplement her breast milk with cow or goat milk.
Triplets return home from the witch doctor on a borrowed tricycle.
Inadequate milk supply is not the only factor that prevents babies in rural Uttar Pradesh getting the full benefits of breast milk. Many rural Indians also discard colostrum, the first milk produced after delivery. Because it often comes in a mother’s breast before the delivery and because, unlike milk, it is often yellow and thick in appearance, people consider it to be bad, even “polluted.” Some people, instead, give their newborns pre-lacteal feeds like ghutti, honey or sugar-water; others supplement it with cow or goat milk. This exposes them to fatal germs and keeps the baby from developing immunity against diseases.
Manju’s understanding of what is good for her and her babies did evolve over time, but it was hard for her to erase all the traditional practices which she had learned during her life. Expecting her to always make the correct decision was perhaps unfair of me.
Two days after the manjala-wala came back from the hospital, Manju and Sateesh took all the three babies to a local witch doctor. They thought that the baby has already received western medicines from the hospital and taking him to the witch doctor could only help. She, like most people in rural India, whether rich or poor, educated or illiterate, spent a lot of money on both witch doctors and western medicines, often when neither is necessary. Sometimes witch doctors harm patients rather than help them, and overuse of medicines leads to antibiotic resistance and inflicts unnecessary financial losses.
One morning in April I received a call in Delhi at 6:30 am. It was Sateesh, crying so hard that he could barely speak.
The previous night, just like every other night, Sateesh, Manju, and the babies stayed up quite late. “All three were awake and playing. They had started recognizing us and all three of them wanted our attention,” Sateesh remembered. In another part of the village, someone was chanting a twenty-four hour Ramayan Path into a loudspeaker. Sateesh and Manju were not invited to the ceremony because they are Dalits, but they could clearly hear the verses during the still night.
At around five the next morning, when Manju was changing the diapers of her babies, she noticed the youngest born among the triplets was lethargic. She thought he was still not properly awake and tried to wake him up. When he would still not latch onto her breast, she realized something was wrong.
He was breathing but only slowly. As his breath slowed further and his eyes started to close, the family got worried. Sateesh cuddled him in his arms and rushed towards the highway to find a shared tempo to a hospital. But as he reached the highway, he realized the baby had stopped breathing.
The last-born among the triplets had died on the 34th day of his life.
“He was alright when I nursed him at 2:00 in the morning. I can’t understand what happened in those three hours. I wish I had not slept that night,” said Manju, with eyes full of tears.
None of us understand the cause of his death but we know that by weight, he was the healthiest of the three babies before he died. His weight was increasing at a healthy average of 19 gm per day; he was neither getting cold nor was he suffering from a prolonged infection. There were also no signs of discharge from his nose or mouth. “We couldn’t even manage to take him to a hospital. We feel as if we didn’t do anything to save the baby,” says Sateesh.
Sateesh’s belief that they were not able to do anything for their baby is wrong. They did everything they could–from KMC to keep them warm, washing their hands and covering their dirty diapers to avoid germs, breastfeeding each one of them every 2-3 hours and helping them grow and fight the diseases. They had worked day and night to help these tiny babies survive their first month of life. But there were many things beyond their control.
The government’s failure in providing facility and home-based care, skewed spending on building concrete structures rather than investing on public health, corruption, and cultural hurdles make rural Uttar Pradesh one of the worst places on earth to be born. According to the Sample Registration System, rural Uttar Pradesh’s infant mortality rate (IMR) was 64 infant deaths per 1000 live births in 2010. This may be an under-estimate: the Annual Health Survey found rural UP’s IMR to be 72 for the same period. If Uttar Pradesh were a country, it would have had the 16th highest IMR among 192 countries for which World Bank data are available.
Public health professionals the world over know that the chances of an infant’s survival is greater if she successfully battles through the first month of life. Yet in discussions about healthcare in India, neonatal care receives little importance. Even when it does, the discussion revolves around doctors and medicines, not breastfeeding, increasing birth weight, kangaroo mother care, keeping babies free from infections, and curbing the disease environment. Doctors and medicines are important, but in India, these other things are far more important.
Rural India’s dangerous disease environment may have been behind the last-born triplet’s death. According to the 2011 census close to 70% of rural Indians defecate in the open rather than in a latrine. Open defecation spreads infectious diseases that are dangerous for young children.
Although I do not know for sure, I suspect the last-born baby died of sepsis, an immune response triggered by an infection. Sepsis is common in very young infants, and can have very few warning signs. If it was sepsis, medical care could have helped the baby survive if given in time, but it would have been much better to prevent the infection in the first place.
Manju with her surviving babies.
Because of such a bad disease environment, these triplets fought a constant battle between external circumstances and the care which they received from their parents. The other two babies survive, but, like other village children, they will grow up shorter than children in places with better disease environments. Thankfully, as Manju’s two surviving sons grow older, their ability to survive infections on their own also increases. I hope that their parents’ strong commitment to their health, which has saved them so far, will continue guarding their lives.
Nikhil Srivastav with inputs from Aashish Gupta
(Some names and identifying details have been changed to protect the privacy of individuals. Nikhil Srivastav is Research and Policy Manager at r.i.c.e., a research institute for compassionate economics. Aashish Gupta is a non-resident fellow at r.i.c.e. and a Ph.D. candidate in Demography at University of Pennsylvania.)
(This is the concluding part of a two-part piece. The first part was published on March 1)
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