Minati’s walking on sunshine

Minati Mardi lives in picturesque surroundings – the Ajoy river rushes past her home and only lotus ponds separate her from the whistling train in the distance.

But born with tuberculosis of the spine and legs, the five-year-old girl could only watch from afar – she was unable to walk or move around her village Mahula in West Bengal’s Birbhum district.

“Her spine was badly deformed,” recalls her grandmother, Jaba Mardi. “She was struggling so much that we didn't think she would live.”

Santhal (also spelt Santal) make up almost half the Adivasi population in the state, and they live almost entirely in rural areas, and rely on local physicians. Healthcare facilities like primary health centres (PHC), are heavily understaffed in this state (Rural Health Statistics 2021-22).

When the baby Minati began to have serious respiratory issues, her family took her to a local doctor. They are unsure if he was a certified medical practitioner. In this remote part of Birbhum district' Suri-I block, it was impossible for them to know. Jaba says they had no idea where to look for qualified medical professionals.

TB has been around for millennia – it was observed in mummies in Egypt and Peru (9000 BC), and has been described as “Yakshama” in Indian medical treatises that place its occurrence to 1000 and 600 BC.

Caused by Mycobacterium tuberculosis, spinal TB is the most common form of non-pulmonary TB. When it strikes children it hits hard – their flexible spines are more prone to irreversible deformities, says this paper: ‘Tubercular spondylitis in children’ published in 2014. It causes loss of bone as well as disturbed growth potential.

Minati’s TB showed up shortly after she was born in 2010. “It started with breathing problems,” says Minati’s father Gopal Mardi, recalling the onset of the disease. “We observed that her spine was curved, and she lost strength in her legs. I was so scared. I don’t know what to do.” He was the lone parent for her as her mother died soon after her birth.

Her gender worked against her – no one gave the young girl much of a chance. “Many people see girls as a burden and discouraged us from seeking medical attention,” says Jaba. “It's possible that many believed she wouldn't last long as she was struggling so much,” she adds.

Her medical treatment costs were unaffordable for Gopal Mardi who is a landless farmer. His only earnings are from cultivating seasonal crops on others’ land, of which he must give a share to the landlord. “Right now, I have harvested potatoes. After three months, I will [harvest them] and get roughly 20,000 rupees, but from that I have to bear the cost of seeds and pesticides, and also any loss of crops,” he tells PARI.

In a year he says he can earn around Rs. 50,000- 60,000. “With that little income, how could I keep her healthy, and take care of the medical expenses?” he asked.

As Minati’s condition showed no signs of improving and local doctors couldn’t help, “we took her to see physicians in Kolkata,” recalls Jaba Mardi.

When the doctors saw Minati, she weighed just 10 kilograms – less than half the average weight of other five-year olds.

“We were shocked to see her condition. She was severely malnourished,” recalls Dr. Saumyajit Basu. “We knew we had to do a series of surgeries to save her life, but she was in no shape.” Basu is a renowned spine surgeon and founding trustee of Spine Research Foundation (SRF) in Kolkata.

Initially the team of doctors put her in a brace to rectify the curved spine while they worked on her diet to improve her nutrition. This non-governmental organisation funds expensive spine surgeries for individuals from financially disadvantaged backgrounds who otherwise lose precious time waiting their turn in government hospitals. Annually, SRF performs over 60 spine surgeries for underprivileged children – a big jump since it started 16 years ago.

Two months later, on July 28, 2015, the first of two surgeries on Minati were performed. It lasted eight hours and the little girl moved into the rehabilitation home. The next month another surgery and this time, “Minati returned home walking,” says Dr. Basu.

But the five-year-old needed a brace – used in skeletally immature patients to reverse or prevent progressive abnormalities. Bracing can provide support to weakened muscles and correct pressures on abnormal curvature.

A brace costs around Rs. 1.3 lakh. “We knew the girl's family's financial condition, so we bore the entire cost of surgery – approximately Rs. eight lakh, as well as other rehabilitation expenses,” says Dr. Trinanjan Sarangi, anaesthesiologist and founding trustee of Spine Research Foundation (SRF).

Minati was discharged and sent home to their village in a car. The family live in a typical Santhali homemade of mud with patterns on the walls. Insides there is a worship space to invoke and honour the spirits of ancestors, a bedroom, cowshed, kitchen and courtyard. At home she continued her medication, physiotherapy and counselling.

When PARI met Minati, the now 13-year-old was standing, surrounded by her family, including her father’s second wife – Palmoni Mardi. Looking at her fondly, Minati smiled and said, “I also got extensive care from my mother.”

Palmoni Mardi told this reporter, “my daughter is a fighter. She is so confident that we got courage to fight this long battle. Now she is doing fine. She helps me in the kitchen and cycles to school.”

Looking fondly at the growing girl she adds, “I hope the blessings of the elders and the doctors will stay with us.”