ASKING FOR HELP
A few days ago, a 16-month old girl, Komal, was brought to our hospital. I was not there the day she arrived, but heard about her while I was still in Delhi, having just arrived the night before from the U.S. She was described as being “in a very bad state”- lethargic and gasping for air. On admission she weighed just 4.78 kg. The family stated she had been “ill” for 1½ months, but had worsened over the last 3 days. They finally decided to take her to the doctor because she was “not breathing well”.
The medical team at Aarohi stabilized her and referred her to the nearest big hospital located in the town of Almora, about 35km from Aarohi. There, we are told, she was bounced back and forth between the district and base hospital- a distance of several kilometers; the lack of an on-site pediatrician cited as the excuse for not admitting this patient. Finally, after presenting to the district hospital again for the second time, she was admitted, for one night only. She was given IV fluids, presumably, and was discharged home the next morning, stating she had improved. One of Aarohi’s senior health workers encountered the family walking back to their village, carrying the still critically ill and malnourished child in their arms, and coaxed them back to the hospital at Aarohi.
Upon my arrival to Aarohi the next morning, I found a severely malnourished, marasmic child with a head that looked too big for her body, a tiny neck that seemed it could snap at any moment, wrinkled skin, swollen feet, and stick-like arms. Ribs jutted out at odd angles and there was a dent in the center of a chest like a crater had fallen on her. She barely opened her eyes, made no sounds except for occasional grunts, and hardly moved. A make-shift feeding tube ran out of her nose, clamped and plastered to the side of her head. Her hands and feet were cold to the touch, face ashen, the tiny palms as pale as alabaster.
The hospital at Aarohi serves as the only emergency center within 35km and is staffed by a resident doctor and a five locally trained nurses and paramedics. There is an x-ray machine, an ultrasound, and a small lab capable of very basic tests (total blood count, urinalysis, stool samples, and tests for TB, typhoid and malaria). It is not the ideal center for a child that would require such intense monitoring and attention. However, having been rejected from other, better- equipped hospitals, I made the decision to admit Komal to our hospital and begin treatment for severe acute malnutrition.
The decision was simple for me. This child would die at home in her current condition- we had an obligation to treat. With such a singular thought, I was not prepared for the battle that ensued, not only from the family, but also from some of the staff members at Aarohi. I was shocked to hear statements like “this is useless”, “we should send her home” and “I quit if this is the kind of situation we are going to put up with”. Over the next few days, however, I found myself wondering if I’d made a mistake. Was I doing a disservice to this little girl by treating her? Would she be better off dead?
WHAT RURAL MEANS, FOR SOME
Life in rural India is not unique. It shares many traits with life in any rural part of the world- infrastructure is often inadequate, education levels sub-par, incomes low. Aarohi is based in the rural part of the Kumoan Himalayas. Villages are built into the hillsides, connected by small mountain paths traversing through jungle. Nearly all families are subsistence farmers and though relatively self-sufficient, poverty is rampant. Few people have the opportunity to see life beyond their neighbouring villages.
As in many places, but particularly true in rural India, women carry the lion’s share of the burden, from managing the household, to fieldwork (including collecting water, fuel and fodder), to childcare. Regardless of their many responsibilities, however, they are deemed the inferior gender, the weaker sex. The theoretical basis for this unfortunate position is likely based in economics, as these responsibilities are not income generating. In communities where subsistence farming is the way of life, even working the fields does not significantly add to a family’s income. Regardless of the reasons for the male bias, however, the consequences remain the same: women are not given a voice and are often considered a burden.
Komal’s mother, Manju, personifies this sterotype. Manju is herself a child, a girl of no more than 16. She has never been to school a day in her life, cannot read or write, cannot even sign her name. She was married off at the tender age of 13, to free her father of the strain of feeding, clothing, and caring for one more child.
As is typical for nearly all rural Indian communities, once a girl is married, she moves into her husband’s family’s home; she now has to live by the rules set forth by her husband, in-laws, and any other family members who may be residing in that home. She has no autonomy, and to survive in this new family structure, she must follow instructions, not speak out. Often she does not have the support even of her own husband. Add a young age and no education into the equation, and she is doomed to live an existence of servitude. It is into this context that Komal, a girl child, was born.
note: though this is a generalization, it is unfortunately true of the majority of women in this region.
THE DILEMMA
The emotional and ethical battle surrounding treating Komal became more and more apparent: the father-in-law, drunk, had come into the hospital at Aarohi, demanding to know why we had insisted on keeping the girl; once, he went to the home of the Aarohi-employed village health worker demanding money to cover charges from the hospital admission in Almora (since Aarohi had referred the patient there, he said, it was Aarohi’s responsibility to pay for the hospitalization); Komal’s father repeatedly asked for Komal and her mother to be discharged because there were other family members to cook for (his parents and younger siblings) and cows that needed looking after, and grass that needed to be cut. (The mother, being so young, lacked basic parenting skills, and so had been asked to stay at the hospital to learn how to feed, change diapers, bathe and interact with her child.)
The question that repeatedly emerged throughout her hospital stay was this: what kind of a life were we sending her back to?
Strike 1: a girl child born in rural India
Strike 2: a girl child born in rural India into a family that clearly did not value her life
Strike 3: a girl child born in rural India into a family that gave priority to the cows over this child
What would we accomplish by reversing her malnutrition? Clearly the damage was already done. At 16 months, she had never uttered a word, had not yet stood, much less walked, or eaten any solid food. Would she be given the attention and nutritional support she will continue to need after this acute event, or would she return again, in this same state, or worse suffer a long, slow, torturous death through starvation? And if she survived beyond the next few months or even years, would we be treating her merely so she could enter a life of servitude for her father’s family until eventually she married (if that was even possible given the amount of developmental delay she was already facing) and began a life of servitude for another man’s family?
In a resource poor setting, every ounce of medical care must be measured. We were feeding the child a concoction of milk, oil, sugar imbued with electrolytes, supplemented by vitamins and minerals that had to be brought from Delhi, 12 hours away. There was already a scarcity of milk, and the other physician at the hospital was providing milk from his own meager stash. What were we doing all this for?
HOPE
With the special concoction of calorie dense feeds injected through the tube in her nose, vitamin and mineral supplements and general hygiene, Komal slowly started to respond. By the second day, she had opened one eye and eventually she opened them both. By the third day she cried and on the fourth day she smiled. She still wasn’t taking much milk on her own and required the feeding tube for most of her feeds, was not able to hold her head up on her own and tired out easily, but she was definitely improving. The dent in her chest lessened, her hands warmed up, her feet became less swollen.
The family involvement also eventually improved. Initally, Manju, Komal’s mother sat at a distance, often facing away from the tiny child at her side. With coaxing and encouragement, she started to sleep next to her daughter, began participating in her feeding cycle. One day I walked into the ward and found Manju (finally) talking to her daughter, playing with her, cooing at her! Komal and her mother smiled at each other, for what I imagine, may have been the first time in many months that such an interaction between mother and child had taken place in that family. Komal began to recognize and respond to her mother. She yearned for her, preferentially went to her, stopped crying once in her arms. Such progress was inspirational for me to see. I really thought, wow, maybe we’ve made a difference.
Then came the inevitable question: can we take her home? Recognizing the realities of rural life and responsibilities to one’s household and the pressures placed on a woman in this region, I understood the need to compromise and find a way to send the mother home. The parents refused to let us keep Komal in the hospital. So, the agreement was made that Komal and her mother would go home by the late afternoon bus and come for “day care” everyday at which time we would continue with the intense nutritional supplementation. Diapers, clothes and sheets were all bundled up for the family to take with them. With a fond bye and see you tomorrow, Komal left with her mother and father.
REALITY
Komal and her mother did return to the hospital the next day, 3 ½ hours after the agreed upon time. Since her discharge, Komal had only received 4 spoonfuls of dal- pani (lentil water) and 4 spoonfuls of milk, stating a lack of milk in the area as the reason. In just that time, her eyes were again nearly closed, her cry weakened. The mother told me she was instructed to pick up medicines and bring her child home. No more day care.
I asked her several times, what do you think will happen if Komal goes home? Do you think she will survive? With tears in her eyes, Manju responded quietly, “My father-in-law says to collect her medicines and bring her home”. “Yes!” I screamed, “But what do YOU want”. Again, a tearful “My father-in-law says to collect her medicines and bring her home”. It was then that I truly understood what it meant to be a young girl in rural India with no education, married off at the age of 13, and give birth to a girl child. I again asked myself, did I just prolong a life doomed for misery?
I have contacted various organizations that may be able to help in such a situation. Unfortunately, this is one case in thousands, and as things stand now, the family is unwilling to give her up for adoption, formal or informal. So, all we can do is hope. Hope that the bonds formed between Komal and her mother may be stronger than the fear Manju has of her father-in-law; that the parenting skills she’s acquired in the hospital will help her, if not with Komal, at least with her future children; that eventually the value of a girl child in rural India is recognized so more children will not suffer a similar plight.
Tags: Aarohi, Dr Anjali Niyogi, Dr Rohit Nair, Dr Sushil Sharma, Komal, Malnutrition
