My Story: “Didn’t You Know That Something Was Not Right With Your Child?”

A child is a blessing in the life of every mother and I have been lucky to have been blessed twice in this lifetime. I gave birth to a healthy baby boy in 2007 and we were eagerly awaiting our second’s arrival in 2011. While the pregnancy was far from smooth with bleeding issues in the first trimester and high blood pressure in the last trimester, the doctor assured that the baby was healthy and developing well and we had no cause for worry.

Our second son, Rahul (name changed), was born in 2011 and everyone was overjoyed that he was born with no complications despite all the hiccups during the pregnancy. Although his birth weight was just over the normal borderline, the paediatrician said that he would gain weight with the right kind of care.

Time passed, he started crawling, then walking and going to preschool once he turned 2. Within a few months, we moved to the USA where he started going to a preschool on a twice-a-week basis and then he was shifted to a regular schedule. One day, when I went to pick him up from preschool, the teacher asked to speak to me once the other parents had left.

The teacher said Rahul was experiencing some difficulties while trying to understand what was being taught in the class. They felt he was experiencing some learning difficulties/disabilities and felt he had to be examined by a learning specialist. I felt he was just being playful and decided to let the issue go. At home, I spoke to Rahul and told him that he couldn’t be playful in school and had to follow the instructions from the teacher. The teacher once again approached me after a few months but I didn’t take her seriously thinking that she was simply exaggerating.

At the age of 5, Rahul started attending kindergarten at the neighbourhood public elementary school on a full-day schedule. He was excited about going to the big boy school and riding the school bus. A few months into kindergarten, the teacher called me once again for a meeting expressing concern over the fact that Rahul had some kind of learning disability because he wasn’t responding in an expected manner to all class activities.

A month later, the school conducted a mandatory hearing and vision tests for all students as per the standards set by the education board. I was shocked when the teachers contacted me to say that Rahul had failed the hearing test. I continued to argue with the teachers saying that the results got mixed up since the entire school has been tested on the same day. They agreed to do the test once again after a month. Again, Rahul failed the second hearing test. This time, the school said I had no choice but to see an ENT specialist.

Hoping that there was some residue left behind from a previous ear infection, I fixed an appointment with a pediatric ENT who asked for a hearing test to be done once by the audiologist in his clinic before conducting an examination. The audiologist confirmed the findings from the school hearing test by conducting her own test once again. The ENT conducted a physical examination of his ear and said that he was unable to ascertain the reason why Rahul had failed the hearing test. He ordered a CT scan since he needed to see the inside of the ear and find out what was wrong.

My mind was not ready to accept that something could be wrong and I agreed to the scan thinking it would be a wild goose chase and nothing would show up on the scan. Getting a 5-year-old to sit still during a scan is a tricky process. The technicians let me stay in the room and only asked me to step out for 30 seconds while the radiation was taking the required pictures. We left the hospital relieved that the procedure was over.

A few days later, we received a call that changed our lives. The scans revealed that Rahul was born with a birth defect which led to hearing loss. He will need a hearing aid for the rest of his life. My world just came to a standstill. Two words repeatedly kept echoing in my head “Birth defect” and “hearing loss”. On a follow-up visit, the doctor said Rahul was born with an enlarged vestibular aqueduct (EVA) which meant that he would experience difficulties while hearing in any kind of noisy environment like a classroom which is why he hadn’t been able to respond appropriately in the class. If he had been born in the US instead of India, he would have been given a health department mandated hearing test for any newborn at the age of 3 months and fitted with a hearing aid immediately.

As the school had informed us about the hearing test, we were legally obliged to let them know that Rahul was going to be fitted with a hearing aid. I sent them an email and let them know blissfully unaware of the fact that this ordeal was far from over.

I received an email from the school the next morning stating that some specialists from the school district wanted to meet both parents in order to discuss a special education plan. Unable to decipher what this meant, we agreed to go to the meeting. The next day, a panel of specialists which included a school psychologist, an occupational therapist, a speech therapist, English language specialist, school counsellor and school principal ambushed us with a whole lot of questions. They wanted to know about Rahul’s developmental milestones as a child. Primarily, their question was “Didn’t you know that something was not right with your child?” I was left completely dumbfounded at this question. How could I tell them “I’m sorry but I didn’t know”? They continued badgering us with questions about his speech development and I told them that there had been no issues with his speech development and he started talking before he started walking.

Everyone believes that a mother knows everything about her child right from the get-go because she had the child within her for 9 months. But I didn’t know that my child was born with a birth defect. Most importantly, I didn’t know what kind of help or academic assistance he was going to need in the future.

We had further appointments with the audiologist who fitted him with a hearing aid and programmed it so that he could hear clearly inside the noisy environment of his classroom. The school psychologist got in touch with his doctors who determined what kind of assistance he would require so that he could perform just as well as the other students in his class.

They created a 504 – assistance plan for him which stated that he would need a designated seat in the classroom so that he could hear well and the teacher would make him repeat her instructions so that she knows he has understood her properly. His teachers had to undergo some training in order to understand how he could receive the best possible help and some officials from the education department came by on an inspection to ensure that he was getting the classroom assistance he needed. The day he wore his hearing aid to school for the first time, the teachers arranged for a 10-minute talk with the class where they explained why Rahul needed a hearing aid and how it would help him. They felt that the other children would not try to pull out his hearing aid or ask any hurtful questions once they were educated about his situation.

Rahul is almost 8 years old now and he has gotten used to wearing a hearing aid. He has a regular life with good friends, fun and laughter and I hope to see him do great things with his life. For the rest of my life, this thought will keep running through my head “I didn’t know” that my child was born with a birth defect.

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