Left to fend for himself: How a Kashmir hospital is failing a hemophilic patient

Since May 2017, a hemophilic man has been living in a paralytic state at a Sarai in SMHS Hospital. His deteriorating condition right under the nose of the hospital authorities perhaps serves a stark reminder of how the poor continue to face official indifference.

When he sought emergency medical help for a body seemingly giving up on him, a 24-year-old shopkeeper from Banihal felt snubbed last spring. But despite the indifferent attitude suffocating him, Amir Wani awaits the much-needed medical intervention while lying on the right side of a bed inside a Sarai, a resting place in Srinagar’s SMHS Hospital.

Crippled, he looks out of the window and often checks his phone. The uncomfortable posture triggers a backache, the pain of which is visible on his face. He urinates in a container with the help of his mother, Manzoora Begum. Thoughts about his late father Ghulam Ahmad Wani cross his mind.

“Things would’ve been a little better,” says Amir, a graduate in Humanities, “had he been alive!”

Before falling to a fatal heart attack, Amir’s father—the headman and the lone breadwinner working in Traffic Department—left ailing Amir and his mother in a miserable state.

“Sisters are married,” he mumbles, amid the busy hospital milieu. “They cannot come to help. Even if they do, for how long can they stay?”

When the soft red blanket covers the slim, weak and wounded Amir, it seems as if he disappears under it and turns toddler — lost in the thoughts of how deprived he was as a child.

As a five-year-old kid, Amir wore a weak look, with tummy plunged in and clothes hanging down his bony shoulders, as the photos show. He would stay extra cautious not to fall for any injuries, his mother says. “He could not afford to run fast or have bruises on his body for he could bleed to death.”

Amir was born with a rare genetic disorder, Hemophilia, an inherited bleeding disorder affecting the normal clotting process of blood, leading to excessive internal or external bleeding. Only one in ten thousand persons can get Hemophilia. And Amir happens to be one such person.

Such persons need lifesaving expensive factors or their substitutes. The factors are costly and therefore not readily available. Amir badly needed those factors when he was suddenly rushed to the SMHS hospital in an ambulance in May 2017.

A day before that, he felt a slight pain in his thigh. Neglecting the pain, he chose to earn a little for his family that now includes his mother only. The pain, however, started to excruciate by the end of the day, completely unendurable.

He somehow managed to spend the night at home. The next morning, he not only felt the pain but also some sort of liquid coming out of his thigh. Amir looked for a corner and checked. It was bleeding. He instantly realized what it was — he had been dealing with it since childhood. His condition had worsened and he needed the factors.

His pain stemmed from Hematoma (a solid swelling of clotted blood within the tissues)—the condition which Hemophilia patients usually suffer from. And the only cure for his suffering at that point in time was a lifesaving factor or Fresh Frozen Plasma (FFP).

Representational picture.

Once he reached the SMHS Hospital, he was told that the hospital had been running out of the FFP stock for two months. Somehow Manzoora managed to get the factors for her ailing son. But scores of hemophilic patients who had turned up at SMHS couldn’t afford the treatment. Some even died, including a three-year-old girl.

Even after travelling a long distance in an ambulance, the unavailability of the factors came as a blow to Manzoora and hit Amir hard. He continues to lay paralyzed on a bed for the last seven months.

“We expected a better treatment here but the kind of treatment they gave has left him paralytic,” Manzoora laments, while making tea for her son. “He skips meals because the pain has killed his appetite.”

The non-availability of the treatment has already shown its results. His Hemarthrosis (a bleeding into joint spaces) has already converted into an abscess—a swollen area within body tissue, containing an accumulation of pus.

Manzoora, Amir’s mother.

A regular visitor, Adil Ahmad, leading the Hemophilia Society in the hospital, walks in to insert a needle on the dorsal of Amir’s right hand, having glaring prick marks. “They would give him two packets of FFP,” Adil says. “What would that do? His thigh abscess has been drained thrice since then. Neither does he move nor does he turn over.”

During treatment, he continues, Amir went into shock because of excessive bleeding. “54 blood pints were used to save him,” he says.

Manzoora and the Hemophilia Society collectively availed the medicines including antibiotics for Amir.

“We pressurized the hospital management to get the FFP for him,” Adil says. “But they simply sat over his condition.”

The grim recollection leaves Manzoora restless. By the bedside of her paralytic son, she demonstrates how 7 kg of pus burst out from his thigh lately.

“It burst by itself and flowed down like a gush of water,” she says, shuddering. “He was then taken to Barzulla [Bone and Joint Hospital] in a very bad condition. The doctors told us that his blood had converted into pus.” With the result, Amir underwent two surgeries and grafting.

Even then, he has been unofficially asked to go from SMHS. But he refuses.

“But where shall I go in this condition?” Amir asks, in a low tone. Looking at his teary mother lost in thoughts, he continues, “My mother takes care of me even at this age when I should have been serving her. They cannot discharge me in this condition.”

But even after taking medicines, Amir still suffers from his thigh abscess. Realizing the gravity of the situation, he is trying to help himself by keeping a check on everything.

“Some 7 to 8 days back, I had a very bad backache,” Amir says. “So, we conducted an MRI by ourselves to check if I’ve tuberculosis or not.” He also got an ultrasound done at Khyber Hospital which showed abscess on his leg.

“We showed the reports to Dr Umar Farooq, who heads this department here,” he says. “He asked us to go for another test. It was sent out. Its report came after 8 days.” Then he was advised to go through neurosurgery consultancy.

One Dr Shafiq Alam, who heads Hemophilia Department in Delhi, told him that he would operate upon him. “After inserting a pin in my back,” says Amir, “Dr Shafiq said that my back is also infected.”

While blaming the SMHS authorities for this, Adil says the Hemophilia Society might arrange free factors for Amir outside Kashmir “but his travel expenses cannot be afforded”.

SMHS hospital.

Dr Ruby Reshi, Head of Pathology Department, Government Medical College says the hospital authorities are doing whatever they can. “We provide the factors whenever available,” she says.

The hospital authorities, however, often remind him and his mother that they’re consuming too much of medicines already, Amir says. “It’s as if we do it for recreational purposes.” He now thinks to sell spare parts at his shop to support his treatment and mother.

But amid his failing condition and desperation, Manzoora’s debt is increasing day by day. Even the charges they’ve to pay to stay in a room in SMHS Sarai are unaffordable to her.

“Here we pay Rs 200 per day which amounts to Rs 6000 per month,” she says. “His father’s pension of Rs 7000 is our only source of income. But I want him to be fine. I don’t know how.”

Note: For anyone willing to help Amir monetarily and help him live a better life can transfer money into Manzoora Begum’s Account number: 0080040100011926, IFSC Code JAKA0TUNNEL, J&K Bank Banihal.

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