Living with the missing 'X'

Living with the missing 'X'

The story of Sowmya Mohan

Written by Mallika Bhatia

Based all over India

“Your struggle develops your strengths. When you go through hardships and decide not to surrender, that is STRENGTH.” This quote encapsulates the story of my life.

I was born in February 1982 to an Army officer and back then a-future-teacher. My parents fell so deeply in love with my cuteness that the fact that I was short-limbed was simply termed as a tiny baby who would grow big and tall with time. I was their first born and hence got all the attention possible. I am told I was quite intelligent, chirpy and a delight to be around. I had started talking very early and would supposedly even hold long conversations as a toddler. I was the apple of my parents’ eye and loved even in the neighbourhood. Since we were an Army family, we had the great opportunity to live in a new place every two years. Around four and a half years after I was born, came along my brother and our family increased. I had started school by now and my parents started noticing that I wasn’t growing in height in comparison to my peers. I wasn't even as agile as them. It took me much longer to cover the same distance that my friends did effortlessly and quickly. After a few months of observation, when I was around 5 years of age, my parents took me to the local pediatrician. He checked my vitals and simply asked my parents to keep patience. 'Some kids just take longer to grow' he had said.

Photo by Jens Johnsson on Unsplash

My parents of course believed the doctor for that time but something kept bothering them in the back of their heads. When I was around 9 years old and still hadn't grown much, I was taken to the prestigious All India Institute of Medical Sciences (AIIMS) for a detailed check-up. We were stationed at Meerut that time.Together the doctors in Meerut and AIIMS finally diagnosed me with Turner's syndrome.

(Turner syndrome is a chromosomal abnormality in which all or part of one of the X chromosomes is missing or altered. Diagnosis is based on physical signs and genetic testing. No cure for Turner syndrome is known.Read more about it here)

My parents finally had the answers for the questions no parents ever want to ask and I had the huge task of accepting that the bullying that I was facing in school would probably never end. I was always a part of the journey that my parents had undertaken in trying to find the reasons for my lack of height and they made sure that I was a well informed part. The way they conveyed the news of my diagnosis to me was by telling me how lucky I was to be blessed with a brilliant brain and a thinking mind. I was told instead of height, I had immense talent. Instead of talking about what all I would lack in life, I was told about how lucky I was to have an endocrine disorder and yet have the least threatening symptoms/manifestation. Instead of talking about my missing X chromosome, we talked about my blessings as an individual. That formed the base of my personality.

Me in the background with mom and my brother

Just because my parents were supportive did not mean my issues went away or that the world was kind. I had started having thyroid issues and gaining weight very early on. When other children were out playing and running, I had to focus on exercising and eating right. With my stature, it wasn't an easy task. In school the other children had all sorts of nicknames for me. I was called githi, chukti, piddi, all local words derogatorily pointing towards how short I was. The teachers were not far behind. My sports teacher did not let me participate in many games because of a lack of height or because my gait wasn't what was considered 'normal'. They decided that I was not good at sports even before I got a chance to experience playing. I was vehemently discouraged from participating in activities where one had to be on stage. I would look too odd on the stage was the general belief.
In all honesty it was a struggle for me to cope physically with regular activities since I was extremely short limbed, yet my mind worked fine, in fact it worked better than a lot of my peers and yet I was not given a chance to showcase it because of the way I looked.

I clearly recall one incident when I was in 9th grade. It was one of the inter-house debate competitions in school that I really wanted to participate in. The topic was Intelligence 'vs' perseverance. I spent many an evening preparing my content, which I later discussed with my English teacher, who was very impressed by it. When I went to the house mistress with my participation request, she didn't say anything to me but the opportunity was given to another child who would look 'normal' on stage. The decision wasn't based on the content that one would present, it was rather based on how one would look presenting it. I was informed about it by the teacher who was supporting me.

I knew I was capable of representing the 'house' and yet I wasn’t given a chance because of how I looked. I was heartbroken and spoke to my parents about this unfairness. My father chose to come to the school and speak to the head mistress. She listened to my father's concerns and yet did not do anything about it. I was handed the duty to help the other participants in the debate but backstage.

As the topic of the debate was, so were my intentions; I knew perseverance well enough and chose to still go on to the stage at the end of the competition and present my views as a guest speaker. I couldn't give up just because a few adults refused to show sensitivity. I knew I wasn't lesser simply because of my height.

Eventually, I was very happy that I did present my views. My real reward came when a few days later my biology teacher, whom I admired a lot, came up to me and told me how much she admired my views. That was my win.

I did continue to lose out on opportunities and still was bullied but by now I had realized that most people always focused on things that were superficial. It wasn't my loss but theirs. Yet some losses hurt more than the others, I lost out on Prefect ship because the Principal of our school did not find my persona towering enough. I took much longer to learn how to cycle. I still didn't have any great friends while my peers were busy forming their little cliques.

Teenage makes life even tougher than it otherwise is. I could observe the bodies of my schoolmates changing. The girls were growing breasts, the boys had changes in their voices and facial hair. Everyone was busy 'growing up' but me. Girls now had boyfriends and best friends and stories to share and all I had were my academics. I felt left-out, very often. My mind oscillated between acceptance of myself and my condition and falling prey to the social pressures and questioning why I did not look like them?

I tried to fit in, I tried to copy them, I tried to ape as much as I could and yet I was not like them. Since no one wanted to befriend a person who looked 'strange', I did not have anyone to share my pain with. I kept internalizing everything. How it helped me in-turn was that it made my inner resolve much stronger. The difference between the real and superficial became even more clearer.

I now could see how much effort my family had put in to support me and to make me feel absolutely normal. I saw my parents struggle internally but they never let that reflect on to me or my brother. I wanted to tell them that I truly valued what they were doing for me, so I started focussing completely on my academics. I got brilliant results in almost every class and enjoyed economics immensely. After school I went on to do a Bachelor's in Economics followed by and MBA from the prestigious Army Institute of Management, Kolkata. I stayed in a hostel, away from my family for the first time during my Master's. It was a test for all my resolve and upbringing. Thankfully that was another test I passed with flying colours. I enjoyed my experience thoroughly. I was independent and completely responsible for my own self. I knew there was nothing that could stop me now. Over the years I had also made some great friends who loved me for who I was.

Post MBA, I entered the corporate world quite effortlessly. In the professional world, I was judged based on my abilities and intelligence rather than my looks. I am currently working as a Manager for a reputed Multinational company, I feel fulfilled and complete in every respect. The struggles were worth it and helped me in building a sense of faith in oneself.

I want to tell each one of you reading this that it is extremely important to trust oneself and accept who you are. It is equally important to focus on the blessings more than the challenges. When issues come our way, we need to face them as stepping stones rather than hindrances. I am thankful to my parents for letting me be independent and never letting me feel that I lack something. I wish more parents could do that. As they say, the way our parents speak to us becomes our inner voice. I am thankful for such a beautiful inner voice. I might be missing an 'X' but I know that in life, there is nothing I am missing out on.

* If you found this story inspiring then don't forget to share, comment, like and subscribe to The Hope Tribe.You can be the instrument of Hope for someone by spreading these inspirational tales. Thanks for reading, Mallika Bhatia, Founder The Hope Tribe

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.


* If you found this story inspiring then don't forget to share, comment, like and subscribe to The Hope Tribe. You can be the instrument of Hope for someone by spreading such inspirational tales. -Mallika Bhatia, Founder The Hope Tribe