Our child is hearing empowered- a family's special journey

The Story of an anonymous family

Based in the United Kingdom
Written by the family itself
Edited by Mallika Bhatia

On the first night at the hospital, while the other newborn babies wailed away in response to each other, ours just slept through like a dream. Wow, parenting is so easy, I had thought. The next morning, as it usually happens, the pediatrician and her team came around for the newborn check up. They were screening for the usual issues like her heart, sight, hearing and hips. Just like all new parents, were were anxious to hear what the doctor would say. After what seemed like an eternity, she said that our baby had not responded to sound. This was followed by her telling us that it was possibly just a fluid buildup, which was a common occurrence. They would check it again after 6 weeks.

Photo by rawpixel on Unsplash

Back home we enjoyed the new born days just like any new parents would. However the frightening thought that she could possibly have a hearing issue kept cropping up. The likelihood of the hearing impairment reminded itself to us in many ways. Friends told us about white noise machines for better infant sleep, the white noise seemed to have no effect on her. We were told about the calming effects of music that the rocking chairs played, it did not seem to calm her down in anyway. We started noticing her lack of response to any sound including our voices. I remember friends talking about avoiding gadgets that made a lot of noise like vacuum cleaners and mixers during pregnancy. It supposedly sent their little ones in a frenzy and made their unborn babies react by moving and kicking. We heard from some friends about how well their unborn baby moved in response to music. None of this happened to me during my pregnancy. No movements associated with sounds, back then I did not put much thought into this. It was just an observation that got archived. Though now it seemed to be like a missing piece in the puzzle.

Even days before the 6 week pivotal hearing test, my husband had started researching about the treatments for children with hearing issues. He kept assuring me throughout that there are options available. Cochlear Implants (CI), which help children with hearing issues hear well was always an option, in case our child had such an issue. This gave us some hope, since internally we both very strongly suspected that our child had hearing issues. However reading through the details of the procedure still bothered us. We were hoping that it would be a minor issue which could be easily fixed. After the tests though, the audiologist confirmed our worst fear. He announced that our daughter had serious hearing issues in both her ears. She couldn't hear from both.

Listening to the technician talk about my daughter's inner ear had put us in an unfamiliar place. He explained that her inner ear could not convey any sound to the hearing nerves at all. The most likely cause of this hearing issue was the untreated viral infection during my fifth month of pregnancy. I had asked the doctors for medication against the infection but hadn't received any. Hearing difficulties as a consequence of the infection was something that never occurred to us. Even though knowing about the solutions was reassuring yet the diagnosis came as a rude shock. No one we knew in our extended families or friends had this issue. It was unfamiliar and overwhelming.

Amongst the many challenges of parenting that one goes unprepared for, this seemed the most difficult for us. The sheer unfamiliarity of the situation made us helpless and frightened. We had to put her through a major surgery at a very early age. We had to additionally take extreme care with preventing infections. We had to make her learn languages through a device that we had only read about on the internet. The experts who were supposed to guide us, weren’t of much help. We were just handed information booklets which were far from the guidance we had needed. In addition, in the long run it did not seem straightforward and easy to find our way through the education & support system.

Those were ongoing struggles, for now we were enjoying our little girl grow up. We had many adorable moments. We had started trying many ways of communicating with her already. We combined talking and signing with animated actions. We used a lot of sensory motor play for her to perceive us. We could see that she took in all the associations and information, except the sound. She was able to interact very well with us in return through gestures and expressions.

We learnt a lot through this process. The children at that age have a huge capacity to learn. With fun filled interactions, one can communicate beautifully with them. We loved interacting with her. It didn’t lack anything because of the absence of sound.

The decision to have her fitted with Cochlear implants at an early age was something my husband and me agreed upon soon after the diagnosis. As parents we had to make sure she gets the best of solutions the medical community had to offer. CI technology seemed to be the best fit in our case. We also decided to have it fitted at a very early age, as we believe that early intervention can really work wonders with children. She was 10 months old when she was operated and the weeks leading to the surgery were pretty stressful, to say the least.

                 

We had to provide our consent through a lot of paperwork, understanding the possible but less probable list of risks. It felt very uneasy to put her through a surgery after being told about the million things that could possibly go wrong with it. I was with her while she wailed away when the anesthesiologists was trying to find her tiny veins to inject her. The procedure lasted 4 endless hours. It was hard to find mundane things to do in order to keep oneself sane during the surgery. We were in the hospital room with a silent emptiness, waiting for the nurse to call us to see our baby. Finally she came and informed us that our baby is in the recovery room and we can wait by her side till she wakes up. The surgeon had fitted the device in the skull above her ears. The device is supposed to send the sound signals directly to the hearing nerve, surpassing the normal hearing route. The process of hearing would not start till my baby had fully recovered from this major surgery.

A month later the audiologist would turn on the external speech processor. That's when we would truly know about the success of the procedure. The wait for the first response to sound was weighing on us. We had our cameras ready. When the first sound signals were sent from the computer to the device, we waited eagerly with our camera. There was no response for the camera to capture.

Some children can react this way, the audiologist had said. We were not so sure. We had exchanged notes with other parents at the rehabilitation centre and it appeared that most other children had reacted to sound when the first sound signals were sent. We did not have a choice then but to go with their trails and wait a good 6 months for any response from her. Eventually we had to escalate the issue with the hospital authorities. We internally knew something had to be different. Thankfully they carried out some reprogramming and we had her first ever reaction to a computer generated sound-wave. She cried!

The sound had created a strange sensation for her. Two weeks after that she turned around when I called her name during play time. This was her first response to a real sound and the first sign to us that the device was actually working. We were elated and hugely relieved that the surgery was successful.

The next step was for her to perceive language through hearing. This process took a good couple of months. As parents, we had to invent our own unique ways of making sounds interesting and meaningful. For instance, we associated a real life object with the sound (name), a sign to represent that, a toy that matched it and a picture card with an animated version of it. This multimodal association is something my daughter found very interesting. Suddenly there were many ways to understand the same object for her. Every time she paid attention to the sound during a game or an interaction seemed like a victory for us as a family. It progressed from just some sounds to a word, then to two words and finally at 2 years of age she started conversing!

Photo by josh peterson on Unsplash 

Our journey wasn't easy but we are really very thankful to medical technology that offers advanced hearing solutions to people with hearing issues.The parents of other CI fitted children are our biggest source of strength till date. They understand our struggles and emotions. We help each other through our experiences and ideas. It is amazing how little time it takes to bond with people sailing in the same boat as us and how much we open up in our conversations.

Our particular favorites are the parents of a girl, lets call her C. C’s situation is similar to our daughter's in many ways. We met their family through a support group agent soon after my daughters hearing loss was confirmed. C was 4 years old when we met her and if someone hadn’t told us that she used cochlear implants, we would have no clue about it. Meeting her and the confidence her parents instilled in us with their optimism was the initial big push we needed. The assurance that it will all be OK, as long as we put in the right efforts took us a long way.

Our biggest learning from our experience is that the primary responsibility of a child is with the parents. Relying completely on external institutions isn't sufficient. It is important to equip oneself with knowledge and understanding of the problem. It is imperative to gain information from as varied sources as possible. The onus is on us and we as parents need to be proactive for our child's development. Eventually it is our child and we are ones who can understand and do the best for her. What matters is not that she is born without hearing but how best we can work with her natural intelligence. Couple the child's intelligence with creatively loving interactions and they would transcend any limitations. It works both ways actually, when the child gains from these interactions and responds well, it is also motivating for the parents to give their best.

After all, it is only together that we can reverse the situation and make a child hearing empowered.


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