#CalEars Nia's Story of Hearing Loss

I have wanted to talk about Nia's hearing journey for the longest time. We are still on it, still continuously working on acceptance and always asking God for grace. It is a journey, one that I plan on talking about and hopefully shedding light here on my blog. I am my daughter's number 1 advocate after all. I named it #CalEars - a play on her name, Cali and Ears.

Where do I even begin? When I gave birth to the twins, they underwent the usual newborn tests which included the Newborn Hearing Test. From there, Nia failed the screening. We went back a week later for a retest and she unfortunately, failed again. We went back after a month and still had a failed result. We were asked to do another one when she reaches 3 months; a more intensive one. Because of the pandemic, we weren't able to go on her 3rd month right away.

We went to get ABR/ASSR tests done on her 4th month. It was a long and exhausting session. They said Nia had to be asleep the entire time so they asked me to nurse her to sleep as they put the electrodes and wires on her head and ears. T
hey turned on different sounds that can be heard from the earphones she was wearing and the computer recorded any reaction. I personally don't understand it but there was a technician who recorded every flinch, every movement my daughter made.

I couldn't help but feel bad that Nia had to undergo this but I knew she needed to, so we'd have our answers- confirmed answers. We went in around noon and ended at 5pm. We were there for 5 hours. My butt hurt as I had to keep still while they test Nia. It took a long time because she kept waking up. The tests will only be successful if she is in deep slumber. My husband, who is always my rock, went with us. He stayed in the room with us. Gave me water if I need it, and just became my legwork man.

After a week, we received the results of her test. It showed that her left ear has Moderate-Severe hearing loss, and her right ear has Profound hearing loss. I cannot begin to explain what I felt when I read the results. I wanted to stay strong, I wanted to not show any emotions in the hospital. I wanted to look tough, not only for my child, but for my entire family. But I couldn't. I cried, wept inside my face mask. It's a worst nightmare knowing that your child, your baby has a disability. My heart was broken, my world collapsed, my entire being crushed. I was so broken. I kept thinking what I did wrong. So many what ifs. For months and months, I just kept crying everyday when I think about her condition. But we needed to move forward.

While talking with her Pedia ENT, she assured us that it was good that we detected it early so we can have early intervention; a phrase I would hear over and over again. But all I could imagine was her having to wear hearing aids for the rest of her life. Fearing that she'd talk differently, or even talk at all, people bullying her, her being different, etc. Honestly, I just thought of everything wrong and everything that CAN go wrong.

The doctors asked me if I got sick while I was pregnant or if our family has history of hearing loss. To that, I answered NO. This was the first in both sides of the family, and NO, I did not get sick when I was pregnant and I actually have had a pretty easy pregnancy with the twins. So everything didn't make sense. I kept replaying every month of my pregnancy or if there was anything I did to maybe cause this condition. 

We were advised that she had to wear Hearing Aids and there's a chance that she is a candidate for Cochlear Implants. If you know me at all, you know how obsessively scheduled of a person I am. I research, plan and schedule everything. So I started researching Hearing Aids, Cochlear Implants, etc. I learned that Cochlear Implants require surgery. So that just crushed my heart once again. Imagine, Nia was just 4 months when we learned of her hearing loss. Then we learn that my daughter, my beautiful baby girl, needs to have an surgery! I started thinking expenses, cost (it's more than a million pesos per ear), logistics (what will happen to Niko while I'm with Nia in the hospital, how's Robyn's schooling going to be like if I'm not there).

We met with an Audiologist who explained to us that the first step for early intervention is Hearing Aids. Then therapy. We talked with other doctors and when they looked at the result of Nia's test, it's the same observation and interpretation.

Last June 1, 2020, Nia got her hearing aids. She was 5 months old. Initially, she looked stunned. She was processing everything she was hearing. And then, she seemed her usual happy self. Before anything else, she was fitted with hearing aids so that she could hear. What she hears is a different story. That's also where therapy comes in. I'll talk about that later on.

It took awhile for me to accept her disability. If I can be honest here, I don't know if I have fully and whole heartedly accepted it. I still pray, pray hard everyday that God grant us this little miracle, that He will restore her hearing. But I believe in being realistic. I believe in being proactive. We need to move. We need to advocate for her. Yes, Nia will change the world. I know she will. Because she changed mine.

For Nia's #calears journey, click here. And for continuous donations for Nia's therapy and other medical expenses, you may refer to her story here. Thank you so much.

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