Monday, October 15, 2007

My journey from detection to speech therapy

Today I am writing about the complete process that I went through from detection to speech therapy till date.

Looking back on the last two and a half years, I am able to divide this experience into four parts namely
1) Detection
2) Counseling
3) Dispersing of the hearing aid/Selection of the right hearing aid
4) Speech therapy

Before I go into the technicalities of the four phases, a small brief on the various experiences that I went through after the birth of my daughter, which sometimes comes to my mind that maybe she was born healthy, but the treatment she went through in the first six days after birth caused her hearing impairment. Though this thought was defeated after we spoke to some pediatrician friends of ours. He mentioned that 3 out of every 1000 children born in India have congenital hearing impairment with no history of any kind in their family on either parent’s side. We have now accepted this fact that our daughter is perhaps 1 out of those three children.
Perhaps, because of this statistical fact, in countries like Australia, Canada and some parts of the European world, I am told, detection of hearing impairment, takes place as part of the primary tests conducted by the hospital after birth of the child. This is the most ideal condition. But unfortunately, in India – our beloved motherland, this is not the case. Here the hospitals are more bothered about how long they can keep you in the hospital under some or the other pretext and keep the meter going. My daughter was born in one of the most tech savvy towns of the country in a very modern hospital under the - supposed to be the best pediatrician in that town, who was not interested in the child for the first three days and as I was cleared by my Gynac to be discharged, came in and declared that the bilirubin count of my daughter was high. It was 13 and advised that she needs to go through something called white light therapy to reduce bilirubin level.
With no alternative, we kept our daughter with white light blaring at her small frame and soft skin for three days to bring the bilirubin level to 10. During all these days, the doctor did not even once check if there could be any other problem. This is not to blame anybody but to bring to light that as I mentioned earlier, that since the rate of hearing impairment in children is so high (3 out of 1000), it is high time that this is made a mandatory test for new born children. This requires a wired test of the child, wherein external noise impulse is given through head phones and electrodes stuck externally on the head pick up the signals to confirm that the sound going into the ear is reaching the brain. This test is called the Bera- test. This completes the first phase of detection.
In our case since we came to know of this around that time our daughter was seven months old, we did the Bera test and confirmed the hearing loss in both the ears which was 75dB in the right ear and 105 dB in the left.
For all of you who are new to this terminology, I will explain that our normal speech ranges between 20 to 40 dB (decibell). 80 dB is noise and 120 dB is painfully loud. So, fundamentally, our daughter lies in the range of severe to profound deafness.

This is the most trying time for the parents when they come to know of the deafness of their child, they need the correct advise, support and help – emotional and moral to start with and then depending on the financial status, financial help as well. It is very important that there is someone who can guide the parents in the right direction, holding hands and providing emotional support. This is counseling.
Unfortunately, the part of the country we are in – a city in the western part, known for its automotive giants, there are no good counselors. You have commercial establishments (read small shops) with the owner, who is herself/himself well versed in this problem and has roughly 25 years or more of experience, but will not guide you properly. The reason is simple – incase the customer has understood everything, how can they trick them into buying some, out of bound technically- not- suitable hearing aid and later when the child is not able to speak, sell them the concept of “Cochlear implant” at a whooping cost of Rs. 7.5 lakhs.
A 10% commission, leading to a cool Rs. 75000.
We also were from time to time coaxed into going in for a cochlear implant and the first counseling we got from this learned lady counselor was that you need to change the name of you daughter as she may not be able to speak her name correctly. She did not explain to us anything about deafness, about what we could do – just these three simple sentences:
1) Your daughter is hearing impaired.
2) She may need hearing aids and later we can think of a cochlear implant – just see her (counselor’s) audacity. In Germany they lead the parents through the process very calmly (as long as the parents require) to decide on the mode of treatment for the deaf child. They introduce you to similar parents who have hearing impaired children and help you understand the treatment better.
3) She needs speech therapy which will cost you Rs. 150 per hour – 2 hours a week. (I will describe later what kind of speech therapy we got from this hearing aid selling agent)
Friends, let me tell you a fact that, my determination, the correct guidance by my speech therapist (not the hearing aid selling agent) and God’s grace that my daughter speaks her name with absolute ease.

I would take you through the process of selection aids in my articles. Please bear with me till then.

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