The Story of Kala Bai - Tuberculosis of the Spine

A medical cure…and then what?

Kala Bai, 22

The illness

Kala Bai, 22, last felt her normal self two months before taking the arduous journey from her mountain village to the hospital at Jan Swasthya Sayog (JSS) in Ganiyari.^[1] Given the severity of her illness, this journey must have been of epic proportions.

Kala Bai had been experiencing increasingly severe back pain. The pain traveled from her mid-back, centered over the spine, to both legs. In July 2010, when first seen at JSS, Dr. Yogesh Jain^[2] took the history of her progressive disability. At the beginning, she felt only tingling in her legs. As the pain became more severe, she noted increasing weakness in both legs. By July, she felt so wobbly walking that she feared falling at any moment. Now, severe pain is her constant companion.

On examination, Jain noted a bulge the size of a walnut in her mid-back, directly over the spine. Clinically, he instantly knew the likely diagnosis: tuberculosis of the spine, commonly called Pott’s Disease.^[3] Pott’s Disease has all but vanished in the West but is often diagnosed in rural India. A confirmatory MRI is planned.^[4] On this first hospitalization, Dr. Jain initiated three-drug, anti-tubercular therapy.^[5]

Kala Bai on her hospital bed with her four month old daughter, Ritu

Her appetite is poor and her weight of 32 kilograms (70 lbs.) that of an eleven year old child and the result of pervasive hunger and semi-starvation. Such chronic malnutrition is a principal contributing factor to her susceptibility to the spread of tuberculosis to her spine.  Her recent pregnancy and the stress of childbirth, are additional major factors that undermined her immune response.^[6]

The long haul

There will be no sudden cure, no sudden relief. Nine months of drug therapy lie ahead. Until her illness incapacitated her in recent weeks, Kala Bai’s days consisted of housework, caring for her two children, weaving baskets and working as an agricultural laborer during the monsoon season.  She and her husband scraped along, among the poorest of the poor, together earning 100 to 150 rupees daily. Now, her illness is so advanced that she can’t even weave baskets, cook or wash clothes. Routine care of her two small children is impossible. She can’t even lift up her infant daughter. Nor can she travel to her home in Kurdar village, a five kilometer walk up a steep, rutted path. A 100 meter walk is about her limit.^[7]  So she, her husband and children have taken temporary refuge in her parents’ home in Aurapani, a village not far from the base of the mountain. And there’s the rub.

A full-blown tragedy

Visiting her at her parents’ home, the fuller tragedy became apparent. Out of earshot, her father confided that the welcome mat will not be extended much longer. She, her husband and children are too much of a burden for his poor household and must leave soon. “We are too poor and have no space”, he told us. Moreover, he admitted that he expects that her husband, an abusive alcoholic^[8], will soon abandon her for another woman. From the poorest of families, fully aware of the many months of disability ahead and the likelihood of eviction and abandonment, she lives with anxiety at every moment. "Nine months is an unimaginable eternity", she says.

Kala Bai with her father and her daughters at the entryway to her parents' home

Closing comment

Here we have a young woman, mother of two, literate and bright, whose future is as bleak as can be imagined.  Capable of reading books, she readily confides that she has not read one in four years of marriage: A poor person like me never has a chance to read a book. No income, no savings, total disability, no one to help, plenty of fear, no hope.

What is our responsibility?  No question: to save this woman and many like her.  Impossible? Not at all. You join in, I’ll join in. We pretty much know the challenges. We can work through – and team up – with groups like JSS in Chhattisgarh and see that this tragedy and others like it are brought to an end…and not at some vague never-to-be-seen “tomorrow”.  Foolish nonsense? If you and I think so, we’re the pain in Kala Bai’s back, the weakness in her legs, the ache and hopelessness in her mind and heart.

Beyond Kala Bai’s immediate need, we can help local groups like JSS set up village-level agricultural cooperatives producing produce that can sell locally, producing significant revenue^[9], preventive healthcare for those at risk, cures for those who are curable, literacy programs and solid educational opportunity for those that lack, and social service programs for the elderly, the handicapped and chronically and long-term ill like Kala Bai.

Kala Bai will be helped. JSS already has her on the road to recovery from the slow death of tuberculosis. JSS will also provide financial support through a fund that may spare her the anguish of abandonment. With a pittance of income from the JSS fund, there’s a fair chance that her father and husband will relent.^[10] We can contribute to support her through the crisis of her illness. There could be a happy ending to this story.

Kala Bai smiling

What use is it to spare her life through timely medical intervention and fail to help make her life worth living?

Postscript

After writing this story, I must sadly report that Ritu, 4 months old, fell into a fire and sustained extensive burns on her left arm. She is now admitted to the JSS hospital in Ganiyari for debridement and treatment of the ensuing infection. Kala Bai is with her.

Footnotes

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[1] To get to Ganiyari from Kurdar,  she had to walk for four hours from her mountain village to Aurapani, a larger village, then two or three additional kilometers to Samariya, a market town, where, finally, she caught a bus to come to Ganiyari. The bus trip, which cost 20 rupees, took 3 hours.

[2] Dr. Jain, a reknowned pediatric oncologist and, now, general practitioner as well, is a founding member of the group of eight physicians that came to Ganiyari in 1999 to found JSS.

[3] The history and then her neurological examination re-enforced the diagnosis – hyperactive reflexes and loss of muscle strength in the lower extremities. Tuberculosis has infiltrated her spine, a condition known as osteomyelitis.

[4] If the MRI shows a collection of pus at the site of the lesion which has caused osteomyelitis and is putting pressure on nerve roots, then surgical intervention will be considered unless Kala Bai shows progress on re-examination after a month of therapy. If improved, medical treatment will continue for most of the year ahead.

[5] Compliance issues loom large in India’s villages. But Kala Bai is an intelligent woman, 8^th standard graduate and literate. Compliance is not likely a problem.

[6] National data in India reveals that extra-pulmonary tuberculosis is found in less than 15% of cases. However, among the extremely poor in the 53 villages in the JSS service area, 43% of patients present with tuberculosis of many other organs, e.g. the bones, as in this case, the stomach, even the brain.

[7] Often impassible in the monsoon season, there is road access to Kurdar Village, a 25 km ride.  Yet, due to her incapacity, Kala Bai can’t return to her mountain home for many months either by foot or in a vehicle. There would be no way to get down in case of emergency or for medical appointments and diagnostic tests.

[8] Alcoholism among village men in India is rampant. It is often accompanied by verbal and physical abuse of wives and impoverishes many a family.

[9] JSS early viewed such agricultural cooperatives as a partial answer to the profound poverty in adivasi communities. The demands of the JSS medical program proved of such magnitude, however, that this initiative awaits funding and core staffing to bring it to reality.

[10] In this case, a stipend of as little as 2,000 rupees ($40 U.S) per month may be all that is needed to see Kala Bai through this crisis.