TB - The ugly face of an innocent childhood

LOCATION: a typical urban semi slum area (in as much as the houses are not makeshift but permanent brick structures) of Lucknow, the capital of Uttar Pradesh, which boasts of the state of art medical facilities.

PLACE: A brick walled house in a very narrow by lane, carefully protected from the prying rays of the sun, and just broad enough to let a two wheeler pass through. There is a small open verandah, leading to two dark, dingy and damp rooms, with no access to sunlight, and hardly any ventilation. One of the rooms doubles up as a kitchen, which has a mud stove run on wood fuel. The smoke from the chulha and from the bidis smoked in the house, linger in the closed environment for long.

OCCUPANTS: Shiv Prasad, a daily wage earner and the sole bread winner of the family, (who is also an ex TB patient) and dutifully follows the patriarchal tradition of spending a large part of his meagre earnings on drinking liquor and smoking bidis and thrashing his wife every day; his father; his four children—three sons and one daughter—aged 14 to 3 years; Ramdulari the charming, but uneducated, hapless wife, who blames it all on her fate and kismet, waiting silently for some miracle to happen to blow her misfortunes away. She has resigned herself to a life where each day’s survival is an ordeal, and where hope has given way to mute resignation. She no longer resents being beaten/ill treated by her alcoholic husband every day. Though convinced of the merits of a small family, she is scared of undergoing tubectomy, but is very sure that she will not beget another child.

THE GROUND REALITY: Ramdulari has a long tale of woe to narrate and pours out her heart to my eager ears. This is what she had to say—“My 6 year old third son, Jugal Kishore, has been diagnosed with pulmonary TB and has been undergoing free anti tuberculosis treatment (ATT) since the last one month, at a nearby DOTS centre. I never had any institutional delivery, and like my other kids, Jugal Kishore too was born at home. It was a normal delivery, but he was under weight. I could only partly breast feed him, as I was not lactating enough. He has never been a healthy child, falling sick off and on. When he was 1 month old he got the BCG vaccination in the hospital, but there was no swelling. So after 9 months an anganwadi (community) worker gave the vaccine a second time. Then also there was hardly any swelling.

He started coughing when he was two years old, which worsened over a period of time. The cough would be particularly bad at night, and often make him breathless. I could do nothing more than massage his back to give him some relief. We would take him to a government hospital for treatment frequently, but the medicines did not improve his condition. The doctors would ask us to buy medicines from outside, which we could not afford. He was eventually diagnosed with TB in the summer of 2011 on the basis of an X Ray. The doctor prescribed medicines most of which were to be bought from the private market. We could not afford that, so treatment was discontinued. Some medicines were given from the hospital. After sometime, he was very sick again, so he was admitted in the hospital for 10 days. Another X-Ray was taken, and he was also given the BCG vaccine for a third time. Then he was put on ATT about a month ago. Only when I told the doctors repeatedly that we cannot afford to buy medicines, did they prescribe free medicines which we now get from the DOTS centre. Doctors have said that the medication will continue for 6 months.

My husband earns around Rs 100 to Rs 150 ($2 or 3) per day, in which I have to run a family of seven. There is never enough to eat in the house, let alone milk or any other nutritive food for the children. We give him plain daal roti to eat as we cannot afford anything better. Sometimes he complains of headache, otherwise he is okay. Another X Ray has been taken recently, but we have not got the report. My husband had TB about 7 years ago. He had taken treatment for 6 months from a government hospital and was cured. But of late he has been coughing a lot, perhaps because of his smoking. He has not gone to the doctor, as he feels he has already completed the treatment of TB once, so he will not have it again.

I do not know anything about TB, or how it is spread. I did not know that we get free medicine for TB. The doctors did not tell us anything about cough hygiene, or about cleanliness, or how to protect others from infection. No other member of the family has been tested for TB, and no doctor has asked us to do so. The child sleeps with me on the same bed along with my other kids. The cough increases at night and/or when he cries. When he was admitted in the hospital, he had improved. Sometimes he complains of headache, but otherwise he is okay. (When I met the child, he had had a severe bout of cough, and he was coughing very close to his 3 year old sister). We were not counselled about any infection control measures at the DOTS centre."

If this is the situation in a metro city, one can well imagine what the situation would be in rural and remote areas. It may sound politically correct to cry hoarse in unison that we want a TB Free World by 2015, but merely chanting slogans are not going to make any difference in the lives of people like Ramdulari and her kids. One has to see what can be improved in the existing setup. Only if the much publicised maternal and child health programmes of the government could reach these unreached populations; only if women could be made aware and counselled about family planning, exclusive breast feeding and basic health/hygiene measures; only if the healthcare services were more receptive to the needs of the common people; only if there was prompt diagnosis of TB and better contact tracing; only if. . . . The list may seem endless, yet it is achievable without any extra resources. Only if there is more competency and accountability in our work, instead of a 'couldn't care less attitude', a lot can be achieved in the field of controlling TB.

Shobha Shukla is the Managing Editor of Citizen News Service (CNS). She is a J2J Fellow of National Press Foundation (NPF) USA. She has worked earlier with State Planning Institute, UP and taught physics at India's prestigious Loreto Convent. She also co-authored a book (translated in three languages) "Voices from the field on childhood pneumonia" and a report on Hepatitis C and HIV treatment access issues in 2011. Website: http://www.citizen-news.org

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