It is a perennial sorrow that her son is deaf but what weakens Sajeena most, to the point of even thinking that life is not worth living, is listening to or watching what her son does every night ever since school reopened on June 1.
The 12th standard boy sits before his study table and opens a round oyster-shaped grey box. Inside are many small cylindrical, curved and round pieces, some black some silver some white. There are some short and lean cables, too.
He fits a white cylindrical piece (a battery) into the hollow of the curved black piece (speech processor) and then connects a small black coil with a round black structure the size of a Rs-10-coin at one end to the curved piece. He then plants the curved piece behind his right ear and presses the round coin-sized structure (headpiece) on the side of his head at an angle just above the curved piece.
He remains still for a moment and then calls out to his mother: "Illa. Kettooda", 'No, I can't hear', in the heavy strained lingo of a profoundly hearing-impaired boy.
"He knows the device has been fully damaged, still he does this every night before he goes to sleep. I think he hopes that it will one day come to life and allow him to hear his sister's voice and what his teachers tell him in school," Sajeena, a frail young woman, said.
Unspeakably exorbitant aid
In fact, her son Anseel's hearing device was damaged three years before. She and her husband, a fisherman, did not have the money to buy new parts.
The battery costs nearly Rs 11,000, which is more than what her husband earns a month. The coin-sized headpiece costs Rs 22,000. Even the seemingly inconsequential coil that attaches the processor to the headpiece costs Rs 1,250.
In Anseel's case, it was the processor that was damaged. To change it would have cost lakhs. "I can't even remember the cost the doctor told us. The amount he said was shocking," Sajeena said. The market rate is between Rs 3.5 lakh to Rs 5.5 lakh.
Anseel has a younger brother and sister and the family lives in a single-storeyed crumbling unplastered house along the Varkala coast, some 45 km from Thiruvananthapuram.
The family was not even aware of 'Sruthitharangam', a government project to provide cochlear implants to poor children. When cochlear implant was done on Anseel in 2013, it was done with the help of a "group of nice people".
The benefits of 'Sruthitharangam' are available only for kids coming from poor families with an annual income of less than Rs 2 lakh.
Global shutdowns
The family has applied to the government for upgradation because the Opus-I processor used in Anseel's device is now obsolete. The global hearing implant company, MED-EL, has stopped its production. This means his device will have to be upgraded to Opus-II at an even higher cost.
It has been four months since the family has applied but the government is yet to respond.
Fact is, since 2021 the government has stopped releasing money for upgradation. It looks like the government could not have chosen a worse time to stop funding the upgradation of implant devices.
From 2022, all the major implant companies chosen under 'Sruthitharangam' have stopped the production of devices that were fitted as part of the 'Sruthitharangam' scheme.
MED-EL stopped Opus-I in March 2022. Advanced Bionics stopped its Platinum version in March 2022. It killed its Harmony and Nuclear versions in March 2023. The company called Cochlear will stop its Freedom variant this December.
On the verge of deafness
Except for Cochlear's 'Freedom' variant, the remaining devices used by poor children in Kerala have become obsolete. "When Freedom, too, becomes defunct, we will have over 500 children waiting for upgradation," said Navas Idathinnayil, the state president of Cochlear Implantees Association and Charitable Society (CIACS).
If upgradation is not done, these 500-odd children could go deaf any moment. It is unthinkable for a family earning less than Rs 20,000 a month to get the upgrade done on their own for Rs 4-5 lakh.
According to figures with CIACS, 35 children in poor families, including Anseel, have already gone deaf because at least one of their external devices -- processor or mike or coil or headpiece -- has malfunctioned.
"Even if the battery dies out, the device will not function again. The companies have stopped production of these parts. So we cannot simply replace these parts. We have to first upgrade the speech processor to the new model at a huge cost and then purchase the parts, including the battery, that would fit the new version," Navas said.
Sound of silence
Fourteen-year-old Shalu is one of the 35 kids who have gone deaf. "It has been three months since my child's processor stopped functioning. We cannot even repair it as the company (Advanced Bionics) has stopped production of this version and is not offering any service," said Beena, Shalu's mother.
"She is in her 10th standard. Her teachers will tell you how bright she is," Beena breaks down sobbing. Shalu studies in Bethany Balikamadam Girls High School, Thattarambalam, Haripad. "We desperately want to upgrade but Rs 3-4 lakh is unthinkable for us," she said. Her husband is a daily wager.
Pain and understanding
Suffering can be a big unifier. Families with hearing impaired children come together in times of need. They are looking for a spare version of the obsolete speech processor used in Shalu's device. They are yet to find one.
Earlier, Anseel was helped by Sanalkumar whose son had done the cochlear implant. After he upgraded his son's processor to MED-EL's higher version, Opus-II, the old Opus-I processor was kept unused.
When he heard of Anseel's plight, Sanal handed over the spare one to Sajeena and asked her to try it out on her son's device. "The processor worked fine but three months later the mike (the short cable that absorbs sounds and routes them to the processor) was damaged. We were told that the sea moisture corroded these devices," Sajeena said.
What Avantika's family fears
Twelve-year-old Avantika's device is functioning reasonably well, though she has on her an obsolete version. "The processor had developed complaints twice and now we have been loaned a spare one by another family," said Biju, Avantika's father, an electrician.
It is not as if the other parts in Avantika's device were trouble-free. "The cable developed problems thrice and the headpiece, too, malfunctioned thrice. But from now on, if any of these parts are damaged, my child will suffer," he said. Not only are spares off the shelves, the implant companies do not service obsolete parts.
There is yet another fear. "What if the other family wants the spare processor back," he said. He shudders to think of the consequences. "My child does not even know sign language. I don't know what she will do if she loses the power of sound at this stage in her life."
Though born deaf, the cochlear implant has helped Avantika to talk like any normal kid. She talked to Onmanorama and we found her as fluent as any eighth-standard child.
Anseel, on the other hand, seems to have lost some of his speech prowess in the last three years when his device was only occasionally functional.
Price of destitution
Biju said he could not think of upgrading on his own. "The company (Advanced Bionics) has a buy-back scheme and under this, the cost of upgrade is Rs 3.55 lakh. But that is only if we hand over the old device with all its parts intact. If any part is damaged, like in our case, the company will charge an additional Rs 75,000, which will take the total cost to Rs 4.25 lakh," Biju said.
It is not possible either to take a loan on his house, the only property he owns. "I have got my house under the Life Mission. We are under an agreement with the government and so can't mortgage the house," he said.
Dangerous road ahead
Anseel's and Shalu's parents have more immediate concerns. "We are worried about sending him to school. He cannot hear the sound of vehicles. The thought of him walking along the road is a nightmare. Two days ago a car nearly hit him when he tried to jump across a puddle," said Sajeena, Anseel's mother.
The realisation that she cannot hear her teachers and even her parents is causing her severe distress
Shalu's mother Beena
Beena, on her part, finds it difficult to handle Shalu's anger. Shalu, too, goes to school daily though she cannot hear a word of what her teachers say. "She comes back crying. And when we try to ask her something, she is possessed by an anger that is so unlike her. But I can understand. The realisation that she cannot hear her teachers and even her parents is causing her severe distress. She fears she will go back to being deaf," Beena said.
Tone-deaf ministry
However, the government seems to be oblivious of the suffering. The 'Sruthitharangam' project is now in an orphaned state, under no department in particular.
Till 2021 it was with Kerala Social Security Mission (KSSM) under the Social Justice Department. After a year of indecision, in the latest Budget speech, it was said that the State Health Agency will implement 'Sruthitharangam' as part of Karunya Arogya Suraksha Padhathi (KASP) from 2023-24 fiscal.
But this is only on paper. Funds have still not been allocated. The KSSM no longer has any funds for the programme either. Even at this stage, top government officials told Onmanorama that 'discussions were on about ways to implement the project'.
There is another grave issue -- a government order limiting the benefits of upgradation to only those children who had done the operation before February 2012, the year 'Sruthitharangam' began.
Top officials of the Social Justice Department have realised the folly and have advised the government to revise the order. If not, the 500-odd children who were operated upon after February 2012, including Anseel, Shalu and Avantika, will be forever pushed into silence.
