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“God has given her to us, so we will do whatever possible for her”

On 5 May 2012, precisely one year (to the date) after Santosh Prasad Yadav and his wife Saraswati were married, their daughter Rohini was born. Since it was a normal delivery, doctors at STNM Hospital in Gangtok, Sikkim discharged mother and baby after two days and they went home to Ranipool 11 km away. It took three years for Rohini to be diagnosed with Cerebral Palsy (CP), a developmental disability caused by atypical brain development of the foetus, which affects the muscles controlling speech and movement.
 
Parents with little education and limited access to good medical care are often left in the dark when their child has a developmental disability. Even after a diagnosis, doctors seldom provide simple, clear, detailed information. Parents seeking answers to how the child acquired the disability allow their imaginations to run riot, turning coincidences into explanations.
 
Santosh, who studied till Grade 4, is from Chapra, Bihar and Saraswati from Siliguri, West Bengal. The couple moved to Sikkim after marriage. Santosh drives (but doesn’t own) a Maxx Passenger jeep and earns a monthly salary of Rs 12,000. Saraswati is a homemaker looking after Rohini, son Amit (9) and mother-in-law Parvati (65). The couple says that, six days after Rohini was born, she was re-admitted to the hospital where she remained in the ICU for 28 days.
 
Saraswati narrates how she went through the Bihari custom of doing Chatti Pooja when the baby is six days old. Mother and baby are given a bath and aalta (a red dye) is applied on the new mother’s hands and feet. During the ceremony, one of the women applied nail polish to Saraswati’s fingernails and playfully brushed the newborn’s forehead with a small tikka. “Soon after, the baby started changing colour and went cold,” says Saraswati, hinting that the two events are linked. However the doctor briefly told her that “some nerves at the back of the head may have pressed against each other”.
 
Santosh says that they consulted an ayurvedic doctor in Siliguri who prescribed “oils for massage and medicines for hiccups”. Saraswati adds that a doctor in Siliguri told them that “the child has some problems in the brain” and should undergo physiotherapy sessions to keep her limbs supple. Finally, when Rohini was three, she was diagnosed with CP at the Sikkim Manipal Institute in Gangtok, where the doctors recommended regular physiotherapy. Each session cost Rs 300 and transport worked out to Rs 200. Despite the expense they kept it up for three years, says Santosh, but they stopped when they saw no apparent change in her condition. Nobody had explained to the couple that it was vital to continue therapy; that her condition would degenerate if it was stopped; and that change would trickle in almost imperceptibly over a long period. 
 
In 2017 Rohini came to the notice of Ambika Chhetri, whose story we recently carried on EGS. As a special educator in the state government’s education department, Ambika was making her regular visits to schools in her jurisdiction when a teacher at the Government Biraspati Parsai Senior Secondary School, Ranipool told her about a “severely paralysed” child in her colony. Ambika found out the address and made her way to the Yadavs’ home. The couple speculated that Rohini may have had CP because Saraswati was pregnant with her during the September 2011 earthquake in Sikkim!
 
Ambika started visiting their house frequently. She guided and accompanied them through the lengthy process of getting a disability card made for Rohini, and on the basis of the card, procured a free wheelchair for her, and enrolled her in the Government Biraspati Parsai school whereupon she became automatically eligible for Home Schooling under a special educator. Ambika herself taught the parents how to communicate with their non-verbal daughter, and how to teach her to make different sounds and gestures to express her physical needs such as feeling hungry or wanting to use the toilet. “I’ve noticed a vast improvement in Rohini since I first met her,” says Ambika. “She is learning to stand up on her own using nearby objects for support. When a sound is made, she is able to look in that direction. She responds when people call out her name.”
 
In 2019 Ambika directed them to the government-run Composite Regional Centre for Skill Development, Rehabilitation and Empowerment of Persons with Disabilities where Rohini receives physiotherapy sessions free of cost. But around four months ago the only physiotherapist at the centre was either transferred or has quit, and no one has replaced him as yet, so the sessions have stopped.
 
Rohini is completely dependent on her mother for all her needs. Santosh says, “God has given her to us, so we will take care of her till the end.”