Saturday, January 30, 2016

The vicious circle

     The more cases I come across the more it saddens me to see how the specialists in hearing industry are minting money at the cost of these very unfortunate parents of the deaf kids. Every case I come across is the same old story. I have almost memorized the whole journey and I know at every step what's waiting for these parents. Is there no way out? Will they keep being tortured this same way? I think it's time more parents question the intention of these ENT specialists and audiologists. 
     It goes this way......
1. Parents realize the child isn't responding to sounds or suspect hearing loss. 
2. They reach out to ENT specialists who would show concern and do some clapping etc and refer to an audiologist. 
3. The audiologist would do a BERA test to determine hearing loss. 
4. Once confirmed they normally give the grimmest picture. 
5. They prescribe a hearing aid but tell them that perhaps that won't work and may require cochlear implant. 
6. The hearing aid is tuned not "too high" coz they don't want to strain the child. 
7. Parents are told to do " interesting talking " not telling them what's interesting and how to talk interesting. 
8. They will do audio grams to keep you hooked and to show support and concern. All this while the indication of cochlear implants is always there. 
9. Meanwhile parents are trying to "talk interesting" who can see the child isn't responding. They are more and more hassled and worried. 
10. The repeated trips to audiologists cost a lot which they keep paying in only one hope that their child would talk some day. 
11. The audiologist will keep saying hearing aids are not working and sure the aren't as the child isn't responding. The pressure starts to build up along with the rising bills and worry for future bills of surgery. 
12. Meanwhile tests after tests show that there is no response and hence child should be given cochlear implants. The time given is barely few weeks. 
13. The parents are running around pillar to post. The family inside is breaking under emotional , physical , psychological and financial pressures. 
14. Somehow they manage to arrange the money by perhaps selling property , taking loans etc the simple reason being ... Their child should be able to talk. 
15.  Soon enough surgery is performed and there you go... Child is hearing but the residual hearing is gone. 
16. Thousands of rupees go next in hourly sessions of speech therapy where even 5 mins over costs the whole hour. 
17. Parents see the child talking and thank their stars for coming across the God who got their child to start hearing. 
18. The audiologist continues to make money and the parents keep arranging by sometimes at the cost of their big needs. 
     Now in this circle what's wrong? Each parent who has approached me says this same thing. I know exactly what's happening in the head of audiologist. They will loan the hearing aid as "service" to parents. The hearing aid isn't given enough gain and hence the sound is NOT reaching and will never reach the child. It's under-prescribed/ under programmed so that the child still doesn't have access to sounds. Hence the child IS NEVER GOING TO RESPOND TO YOUR TALKING. They do not sell the hearing aids to you coz they want you to save costs as they are "concerned". 
       Parents keep visiting them with no sign of speech and sound in the baby. Desperate parents get pressured as "time is running out". The audiologist will pretend to increase gain but with no result. Damnit.... Child will respond if you give the required gain!!! But I guess for them the big money is making its entry into the clinic..... So why bother. 
       They are shown success stories of implants and made to see dreams. It's a very expensive show!! Gullible parents are walking into the trap sadly. 
       The parents eventually implant the child and are at peace while the saddest part being that the residual hearing that could give the child speech and language is destroyed forever!! The child never got a chance and instead is carrying a gadget that's so complicated and needs surgery in future for changes and upgrades. 
       When will they wake up and have a good intention in heart? Will they ever stop thinking about personal gain and think of a child and family whose life they are playing with ? What is few thousand dollars or lakhs of rupees for them that go into a bank account getting accumulated is sometimes all that these parents have to survive. Don't they have any ethics? Don't they know that they are doing so much wrong? Taking away that precious residual hearing that can be used!! It's cheaper and so much more convenient ! You can change aids as and when you like. Speech therapy is important and both can give required speech if given well. Aren't they aware that they are supposed to implant only after 110 db loss? It hurts me to hear these stories so often. I wish I had the money and power to give this facility and care to these poor babies. I have success stories to tell of happy and satisfied mothers who feel grateful that they got saved from this vicious circle and have hearing aids and the kids speak like normal kids and are integrated into the normal system. I wish I could save them all I hope this post goes to these audiologists and wakes up their conscience. Earn money but not at the cost of those who are already disadvantaged and are so helpless. Don't squeeze out their last earnings that perhaps they give you for the chatter of their little babies. Can you live with that money? It's perhaps given with a lot of pain and internal cry! For your personal gain don't kill those little hair cell in that little cochlear which is the size of .... One green pea. It's given by God to them for them to make use of. Don't take away even those. 
    I hope some day there would be a change and hope more and  more will get the right advise and help.  

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