“What is the point of writing about my daughter again? I will be happy if it can help her get better,” says a frustrated Mudassir Pasha, whose daughter Mariam Kouser has been in a vegetative state for three years.
All it took was a minor fall that resulted in a swollen and painful elbow, while playing in front of her house on that fateful December 13, 2013, for little Mariam to end up like this. The situation remains the same three years hence for Mariam, now six-and-a-half.
Three days after the fall, she went into coma after a surgery to fix her fractured elbow went awry at the State-run Sanjay Gandhi Institute of Trauma and Orthopaedics (SGITO). Now, it is only through the movement of her eyelids that her parents know that she is sleeping or awake.
From SGITO, she was shifted to another State-run hospital, Indira Gandhi Institute of Child Health, and then to Malathi Manipal Hospital, a private facility. Following allegations of medical negligence, the government had set up a committee to probe the issue. The committee, headed by the then State Health Director Geetha Nyamegoudar, had found negligence by doctors who initially operated on her at SGITO.
All the four doctors were initially placed under suspension. Subsequently, two of them (who were outsourced) were terminated and the others got a clean chit and are back at work in the hospital.
Mariam, daughter of air-conditioning technician Pasha and homemaker Basira Banu, suffered hypoxic brain damage due to insufficient supply of oxygen to her brain. The child, who was in an ICU till two years ago, was shifted to her house in Hoskote after the family could not bear the inflating medical bills.
Mariam is surviving only on liquid food that is carefully prepared and fed through a nasal pipe by her mother. The family has set up a mini ICU in their house for Mariam and they take her to the hospital for follow up once a fortnight.
Shivakumar S., Paediatric Intensivist at Manipal Hospital, where she is on follow up, said there has been “no improvement” neurologically. “She has developed stiffness in her limbs and is in a vegetative state. She can feel what is happening around her but is not able to communicate or move her limbs,” he said.
Running from pillar to post to arrange funds and get help in seeking justice, Mr. Pasha has now nearly given up. “Although her four-year-old sister Hana is unaware of what has exactly happened to Mariam, she prays every day along with her mother for her recovery. Mariam does not even know that she has another sister Khansa, who is 18-months-old now,” he told The Hindu.
He said it was a consistent struggle to maintain Mariam in a stage of coma. Her mother, who is also her nurse, feeds her once in two hours with watery gruel, milk or boiled vegetable water. “She changes her position every half-an-hour to ensure she does not develop bed sores or stiffness in her limbs. We have to monitor her heart beat, pulse and other parameters continuously. If we appoint a nurse, we have to pay at least Rs. 30,000 a month, which we cannot afford. We have already spent more than Rs. 40 lakh for treatment,” he said.
Meanwhile, the distraught family is fighting for justice in the consumer court, after their attempts with Karnataka Medical Council, the then Health Minister U.T. Khader, and other authorities failed.