COCHLEAR IMPLANT- Sounds of my child

Vowels taken out from my language and God still expects me to utter meaningful words...

When my son was 8 months old, we detected his hearing loss. As consulted by a paediatrician we went for a B.E.R.A.(Brainstem Auditory Evoked Responses) test. We eagerly waited for the result to be negative. The next day was my birthday and I was praying earnestly.
My husband taking a break from his work came home with the report in his hand. It was indeed negative. We were at peace and enjoyed our day graciously.

After this episode, a very good news came to me about my husband's job transfer.We shifted our base to New Delhi, my tribe- my home-town, in a few months. I was extremely happy. But in the midst of all such happenings again we noticed my son was not able to respond to my voice, the calls, the rhymes that I sang to him. At first we thought just like any other child, he too is lost in his own world playing with his things. I was not at all coming to terms with my husband repeatedly saying  me to  schedule an appointment with a paediatrician again. It was too hard  for me to believe  and I completely brushed off his observation purely.  How can it be true as I spent most of the time with my baby alone while he was at work. I saw him enjoying his favourite channel BABY TV every day. He smiled when I sang songs and the poems.  At times he responded to his Nani (my mother) via Skype.

But this time my husband was right. Shifting to Delhi, the first thing we did was to meet doctors. We met  paediatricians', audiologists and E.N.T surgeons. My son completed his one year by this time. Putting my heart back together soon we made him undergo M.R.I., C.T. scan. I was literally inconsolable. How can it happen to my child? He is so tiny. I asked God daily. Being an adult I can bear all the pain but seeing your child go into all this is hell. In other terms its a form of a disability i.e. a condition that limits a person's physical or mental abilities. Its such a big and a worst kind of thing happening to me, that's all I was thinking day and night. 

In another three months my son underwent three more B.E.R.A. tests to check the severity of hearing loss. It was all same with not much difference.  At all the times he cried uncontrollably and vomited several times. According to the doctors in Delhi, the first report that came in previous city we were living in were actually incorrect. The graphs and the waves formed on the report were all wrong. That was quite unsettling for me. Am now having my biases and doubts for a repress or a crushed capital city of a state that has proven wrong reports that took my crucial time as a waste further. Ironically the clinic that did the test comes in one of the best areas of the city.

After that we got in touch with a doctor- a speech pathologist. I along with my son moved to my in- Laws place to another state for about two months for his audio-metric tests that were to be conducted daily for 20 minutes. It was quite a difficult period taking care of my son without my husband who could visit us on weekends due to work commitments. But he all the way travelled for us spending his weekends up and down travelling. I found little change in my son's hearing after a month. He started noticing loud sounds but not consistently which was one major factor. Plus he was on  Ayurveda as well as Homeopathy dosage too. With not much satisfying result I came back. 

Then as suggested by the audiologists in Delhi we started with his Speech therapy for two months. They tried games, he enjoyed; the dances, he copied . But the result was all vain. There was no improvement in speech.

In another month, we purchased hearing aids after consulting another ENT doc.  It was a very challenging task for us and for my son too. Often he would pull out those and it had to bear maintenance's.  By this time, we wanted a good speech therapist, hence admitted him for the classes that took place twice/thrice a week. In about three months my child started babbling. Sounds such as BA BA, TA TA, BYE BYE, MUM MAA, PA PA, DA DA, NA NA, dogs bark, tigers roar, he started with it. It gave me a boost that he may continue to pick the language with hearing aids. But soon it too started fading away. Yes the sounds were still there but were not constant. If somebody acted, he would do BYE  BYE or sometimes say TA-TA but will never 'say'  BYE on  hearing the word when somebody say so without using any sign language. Also, its seen that hearing aids cannot cover S and SHH sounds with severe loss.

It was during this time that we visited some pious beings. We visited Temples, Gurudwara, and Dargah. He was given Prasad, lucky charms, pendants, threads. I even followed directions showed by an auto- wallah while taking him to his speech therapy class. He asked me about the hearing aids and directed me to a Christian organisation, working as Healers. Visiting them made me change my views about them as instead of healing my son they were adamant in their ways making me convert. I don't understand some people after greying their hairs are still not matured yet to understand that God is one, that he doesn't need any rituals and rules that are simply man-made.

Regarding Pandits, lots of them have knowledge about the planetary positions and its effects on us just  the way we study a particular subject as per the profession chosen and become experts. They can surely guide for the perfect time to buy a house, or a time for a job transfer or even calculate a perfect marriage date. But a problem like this isn't in their hands, hands  filled up with gemstones. These people cannot even predict the next earthquake and saving millions of people from its effects, how can they govern my life. It was a  total waste of time. Have now experienced it altogether.

We consulted Pandits, Pastors,  Astrologers, Pranic Healers, Reiki healers in great hope but everybody was boasting and preaching the dos and don'ts.  Cooking up Karma stories, some were egoistic, some showing way for a pseudo guru, while some were money- minded while very few  genuine ones  told us to seek doctors advise simply.

From reading scriptures  and keeping fasts, I did everything. I recollect a line from a scripture that reads: "Meditate on me with your mind, body and SENSES" ?? So untrue. As long as God resides in my heart, no need for any other material or mortal forms .

And as all the resorts failed, I admitted him to a play school to see how he merges with the children and was hoping to see any change in his hearing while listening to rhymes and dancing along with them.

I waited for a miracle to happen.

This was the same time when a movie 'Bajrangi Bhaijaan' came. Without watching any trailer or   checking any reviews we went for the movie. The end stunned me and the way the word 'MAMA"(mother's brother) was called I was speechless.  I thought the film is made for my child. I had goose bumps. I again started hoping  for something positive to happen.

Finally I made up my mind a month before Advitiya's second birthday. Right time for speech development would have lost if I would have extended the period. After  doing a one year long research, verifying all the aspects and lastly complying with my husband, parents and close relatives we moved further and decided for the surgery i.e. Cochlear Implant.

For those who do not know what it actually is - A Cochlear Implant or a Bionic Ear is a surgically implanted electronic device that replaces the function of the damaged inner ear. What Cochlear Implant does is that it bypasses the damaged hair cells of the inner ear (Cochlea) to provide sound signals to the brain.

COCHLEAR IMPLANT  

               Source-Image:Internet, Video: You tube;Cochlear Americas

The sound he would be receiving now will not be natural, like you and me hear, but it would be an electronic one different from the natural sound. Though it will be accurate and clear. 

I checked videos of other CI recipients, read patients/parents reviews and even checked surgery videos. I was not still able to digest the fact that hearing aids cannot work on the level of the decibel he needs and that he is left with the only choice - the Implant.

Under the guidance of an acquaintance, who connected like a messenger to me, and also a recommendation from my brother we sought the best doctor in town.  His generosity and unselfish behaviour made us trust him for my son's future. The way he solved all my questions with vivid examples made me feel relaxed after a long year.

Dr. J.M.Hans, my son's doctor is a gem. He is marvellous in his work as well as in person. Whenever I get a chance to meet him I feel happy talking to him. With so many awards and experiences in his cap, this man is an angel in disguise. Am grateful to God, that after so many turbulence's since the last one year,(and coming back from Mata Vaishno Devi shrine),at least he has shown us his divine grace in the form of this Man.

Thankfully my son, Advitiya, was into the hands of a very brilliant pediatrician also(whom we followed at later stage) who detected his hearing loss and referred a set of tests to be done beforehand. The previous pediatrician of a very reputed hospital couldn't even detect the child's problem . I remember when we mentioned him about our observation, instead of checking him by ringing bells or something like that,  he referred us to some speech and audiology institute. But there are some pure and honest beings in the world who cannot bear to see the child who cannot hear. 

Luckily, now there is a cure for  hearing loss. The only problem in India is that people doesn't have much knowledge as well as information regarding this implant. The people who came to meet my son and those who didn't know what happened to him during his operation. They just know that its only a machine attached outside the ear. That's it. Neither there is any initiative by the government.  

Hearing or Hearing Loss concerns all.The ability to hear is such an integral part of our lives, the most important primary sense, that most people take it for granted. The importance of good hearing and the consequences of hearing loss are still UNDERESTIMATED.

Few days back I was travelling by metro for a hospital visit. I saw a woman complaining and whining about her little daughter. Standing opposite me, I was able to hear her conversations with another woman about the struggling period of taking care of one's own kids.

I pity those parents who talks endlessly about struggling with their child who can communicate to them. Who can be taught ways to learn the accepted norms, who can be moulded easily. Its rather difficult for a child to understand others and show his anger through sign language when not able to express things.

I love my son to the core. He is truly been gifted by God with an invisible power I am sure.  I will not call him special but extra-ordinary. Just waiting for him to hear sounds of the world through Cochlear nucleus 6 and make a stand in the world.

Just as, Lord Ganpati-the bestower of knowledge and wisdom- whose head was chopped and renewed to a new one, so has Advitiya's ears have been renewed by God himself. My son is his father's Einstein, always busy with exploring things and his mother's Sun, always glowing and shining without a single rest illuminating the whole world.

"Tomorrow, you will be reborn..."

My son underwent Cochlear Implant on April 13th,2016. He has now recovered fully and we are eagerly waiting for his reaction with the machine. He would soon be starting off with his classes and from now on we have to make lots of efforts in teaching him the Language. Yes it's going to be a hard work but this time I will not compromise with anything lesser than the best.

Last but not the least, the one year that went by was a nightmare. I struggled with a thing that I haven't experienced in the past nor in my family or genes.

I have learnt  few major things in this whole process..that, HEARING- a sense organ- for me is an important function. I am, day- by- day ,moving farther from the loud noises and away from the extra loud people. I am enjoying the nature in its full form, enjoying its light, soft breeze and peaceful Sounds. Life is not to suffocate ourselves, and most importantly our Ears or any other sense organ, but to enjoy God's beauty which is permanent and cannot be created by humans. I have understood the difference, that we were taught at school, between Natural and Man-made, completely now.

One cannot put a leaf back to its branch once it has fallen. Some things are pre-destined, takes shape  and gets revealed on time beautifully for a reason unknown as of  now.

 I from the bottom of my heart thanks my parents who supported us tirelessly and religiously day and night. My small 'thank-you' is too small for their deeds done. My mother is the most dedicated lady. Thankfully, I learnt the art of multitasking from her.
P.S. - Special Thanks to my Mami (a pediatrician) also. Without her help and advice, my precious time would have been wasted.

My heartfelt thanks to Dr. William F. House, Inventor of Pioneering Ear-Implant Device and to Dr. Graeme Milbourne Clark - the first person to develop the multi- channel cochlear implant.


A NOTE TO THE PARENT'S PLANNING FOR C.I. -
Few years back, nothing could be done for the Ears. 
If ever you get doubt about your child's hearing, don't hesitate to check your child for a simple B.E.R.A.test from a proper city or a government hospital. 
If the result is 'Profound to Severe loss', you can try  Hearing Aids for at-least two months rigorously or else go for the Cochlear Implant as soon as possible.
Please don't wait. The age of the child is much important. Lesser the age, more the development. 
Raise your baby calmly and happily. 

My son has received his Magical Ears now. He is now being trained by a speech therapist who takes his AVT classes i.e. Auditory Verbal Therapy. Slowly he will cover up the language gap.
I am ending my blog with a positive quote that I can relate to with my life.

Do your duty, come what may!