New Delhi, Oct 22 (IANS): Surrounded by hundreds of stretchers and anxious patients outside the bustling OPD canteen of the All India Institute of Medical Sciences (AIIMS) here, 17-year-old Shehnaz lies under the open sky on a sunny afternoon.
She smiles at every passer-by who cares to look at her bony structure, protruding jaws, sunken eyes, and a skin that has turned dark blue after years of battling with bone tuberculosis.
After spending 40 days outside the AIIMS campus, her parents are busy packing a set of blanket and pillows to leave for Patna. The faint flicker of hope that came the family's way faded Saturday afternoon when doctors at the premier health institute told them to take Shehnaz away because there was "no hope left for her life".
"She has been under treatment at AIIMS since 2002. She had tuberculosis (TB) in the lungs. Later, doctors said it was chronic bone tuberculosis. The infection has spread to the entire body... doctors today said she may die soon, so it is better we take her back home," her father Kamruddin, 50, says.
"Ab shayad kuchh nahi ho sakta... (Maybe nothing can happen now)," the crestfallen fruit vendor from Khagol village in Patna told IANS. He clutches all treatment-related documents and reports in his left hand, while holding his daughter's arm with his other hand.
Shehnaz does not speak, only smiles and listens closely to all that happens around her. She weighs just 15 kgs and left school in 2002. Her white-and-pink bedsheet, infested with flies, tells the tale of the last 40 days.
"We came to Delhi Sep 12. Since then, we have been spending days either in the toilet or outside the canteen. Thankfully, we got a stretcher when we came, and nobody asks for it, considering Shehnaz's condition," Kamruddin said, adding that "the wards were not available".
He is under a heavy debt after spending nearly Rs.5 lakh on the treatment. His house and farm land were sold to pay medicine bills a long time back. The family stays in a rented house now.
The family's agony began in 1999 after Shehnaz, then studying in Class 3 of a local school, was diagnosed with lung TB. For around three years, she was admitted at the Patna Medical College and Hospital (PMCH), after which she was referred to AIIMS.
Since 2002, Shehnaz has been visiting AIIMS every three months.
Shenaz's mother Asha feeds her khichdi while Kamruddin narrated the family's journey from Patna to New Delhi. But the frail Asha soon steps in to say there have been some "joyful moments" in Shehnaz's life.
"When she was under the medical observation of a pediatrician in AIIMS, she showed tremendous signs of improvement. After some time, she was referred to two other doctors, who ruined the case," Asha said, wiping her daughter's face with her saree's pallu.
She said Shehnaz was never referred to a specialised department.
"We visited pediatrics and medicine OPD (out patient department). Otherwise, nobody referred us to any specialised department. We don't even know what exactly is bone TB," Asha told IANS.
Bone TB, likely to attack spine and ends of long bones, may even cause paralysis in the lower half of the body. Children are especially prone to spinal tuberculosis even as 5-10 percent of TB patients suffer from this type of the disease.
Shehnaz gestures towards her father to show this correspondent her picture which he carries in his pocket. Kamruddin says she does that whenever there is someone to meet her at the hospital gate.
"It is hard to recognise she is the same girl who always spoke of becoming a teacher and educating children back in the village school," he said, slowly putting her medical papers back in his bag.