May 2019 Greater Kashmir
Azra Jan was the first child born in the family. Like others, her parents kept eagerly waiting to hear their daughter speak a few broken words. But even as Azra turned 18 months old, the wish didn’t fulfil. Worried, the parents took her to a faith-healer. Many months later and after performing some rituals, Azra did not speak at all. By then the family had realised their daughter was not able to hear as well. Finally, they took her to a paediatrician. The child was sent for an audiometry test and then the family landed at the clinic of a specialist doctor. He broke the disturbing news to the family. Azra was born deaf and because she wasn’t able to hear, her speech was not developing. “My world came crashing down in front of our eyes when I heard the doctor. All bad thoughts started occupying my mind. I thought my daughter will have to live life of a deaf and mute person forever,” recalled Azra’s mother Shakeela Akhtar.
But the doctors didn’t give up hope and after a long treatment and a surgery, today, Azra can read fluently from her school text books. Her mother, exhilarated with drastic improvement in speech of her daughter, calls her “chatter-box” for non-stop talking. “The surgery changed her life forever and ours too,” she said with a smile in her face. The life changing procedure that prevented Azra from becoming a speech and hearing impaired for her entire life was a cochlear implant. Cochlear implant has benefitted thousands of children across the world and scores in Kashmir. It is the only procedure that can prevent a speech disability in children born with hearing impairment. However, the procedure yields best results if the implant is fitted before the age of two years.
Prof Rafiq A Pampori, a cochlear implant expert and ex-principal Government Medical College (GMC) Srinagar said a child’s speech develops from what he or she hears. “Therefore, the day the device is implanted is the first day of hearing for that child. The speech learning starts from then onwards,” he said. For better speech development, he said, the use of the device at early age prevents development lags in children. “If child is four years old, at the time of implant, his hearing and speech age is zero, as good as a newborn. They will need to learn from scratch,” he said. However, the surgery is not a guarantee for development of speech. The children need to follow up with audiologist and speech therapist, sometimes for years. Many people who get their children an implant outside the state often face the issue with follow-ups. “Every visit to the speech therapist and audiologist would cost thousands and when there are no regular follow-ups, the results dips,” he said.
While the cost of the equipment ranges between Rs 5 lakh to Rs 13 lakh, for children, the implant and the surgery cost is entirely covered under a government of India scheme, Assistance to Disabled Persons for Purchase/Fitting of Aids/Appliances (ADIP). In Kashmir, as per ADIP information portal, there are two hospitals, SMHS Hospital and Modern Hospital, accredited and empanelled for the procedure. Prof Pampori, who had started cochlear implants at Government Medical College (GMC) Srinagar is the only surgeon accredited with ADIP for cochlear implants. He urges that more and more not-for-profit organisations and philanthropists should come forward to finance cochlear implant surgeries and help children born with disabilities lead a normal life. “Although ADIP has financed scores of surgeries in Kashmir, we have about 30 children in waiting for ADIP assistance,” he said adding their parents could not afford the costs and the delay in waiting for the government assistance sometimes made the children lose “precious time” that could help them develop normal speech. “Many children have been financed by some individuals and thanks to their generosity, are now disability free,” he said. Prof Pampori said cochlear implants can also help individuals suffering age related hearing loss. “When all hearing aids fail, cochlear implant can still help the patients have near normal hearing,” he said.