10-year-old Hrithik and 8-year-old Nisha were born deaf. Their father sold land to put together Rs 5.5 lakh to get cochlear implants for them as contributions from the prime minister's relief fund and other donations weren't enough to cover the cost. Though the implantation was done in a government hospital, the family could not afford to make the frequent trips from beyond Gurgaon to the capital for the speech therapy following the surgery. The therapy is crucial for the children to recognise sounds they hear and to start talking. Irregular participation in therapy sessions in the government hospital and not being able to afford them in private clinics, has meant that three years after the implantation, the children still cannot speak. Out of work now, the father struggles to get the children the required therapy.
Six-year-old Arman got a cochlear implant in a Delhi private hospital four years back. It cost the parents Rs 7 lakh. The hospital gave him speech therapy for two months as part of the 'package', after which his parents were told he could be taken back to the village in Moradabad and admitted in a school since he could hear. Four years later, discovering that Arman can neither speak nor understand sounds, desperation has forced his mother to move to Delhi with his older brother, who has been pulled out of school, so that Aman can attend speech therapy sessions offered by an NGO. The hospital only told them that with a cochlear implant the child could hear. They begged and borrowed from the extended family to pay for surgery. They continue to spend on implant maintenance. But the child is yet to speak or understand speech though he can hear.
Such stories abound among poor children who have got cochlear implants. The families don't have the means to either have regular speech therapy or to maintain implants. Ironically, only the poorest (family earnings not exceeding Rs 20,000 per month) qualify for the government programme for free implants.
While surgeons and hospitals empanelled to do the surgery boast of the number of implants they have done in these programmes, there appears to be little follow up to ascertain whether all the poor children given implants have truly benefitted.
Are families for whom ENT surgeons enthusiastically recommend cochlear implants ever told of the huge commitment of money and time they have to take on after the surgery? Are they counselled about the almost three-year period of intense speech therapy and training of parents crucial for the child to start hearing and speaking? In many cases, there has been little or no counselling. Counselling would check whether they have the means to replace the lead wires (Rs 1,250-2,000) that get damaged easily? Also, can they afford to replace the external processor (Rs 25,000-30,000), the battery charger (Rs 17,500) or the four rechargeable batteries (Rs 8,000) if any of these stop working? Do they have the money (Rs 2,000 a year) for at least two sessions needed every year to fine tune the device for the rest of their life? Since this isn't ascertained, hundreds of children have gone back to being deaf as the implants stopped working when the processor or lead wire got damaged.
Cochlear implant surgery, which is beyond the reach of most people, took off once governments came forward to pay for them. With the central government's free cochlear implantation programme (Rs 6 lakh per child) and similar outlays of various state programmes in seven states, there is a race among surgeons to implant, especially in states where they procure the implants themselves as there are generous commissions for surgeons and hospitals.
Identified through screening camps in rural or mofussil areas, these children are brought, mostly to large cities where empanelled hospitals, pre-dominantly private ones, are located. Once implanted, most poor parents find it difficult to stay on in the city for the child to undergo the extended speech therapy or to make the trek from their homes to the therapy centres for the 104-156 sessions in one year for which the government pays. And that's when the ordeal really begins.
"The needs of a child differ depending on the type and extent of hearing loss and the age at which they are getting implanted. Most children need intensive therapy of 3-4 sessions per week for the first six months after which the frequency can be reduced if parents are educated enough or trained to do the therapy at home. With intensive speech therapy and financial capability to maintain the implant for a lifetime, cochlear implants could make a huge difference. Without the therapy and the means for maintenance it is a cruel joke to submit these children to this surgery," explained an ENT surgeon.
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