INDONESIA: Our Hearing Loss Journey
A year ago, when our daughter was nearly 8 years old, we found out that she has profound hearing loss in her left ear. We had been concerned about her hearing since she was in preschool. Her class teacher assuaged our worries and subsequent teachers never raised any issues. But still, we wondered.
We couldn’t get concrete answers
A few years later we arranged for an audiology test at our health clinic in Jakarta and were told that her hearing was fine, in fact, her left ear was “better” than her right ear. Although I should have been happy when the doctor delivered the test result, I felt skeptical and couldn’t shake the feeling that something wasn’t right.
We had to wait another year until our next US visit to schedule a more thorough assessment. This time it was immediately clear that there was a problem. The audiologist grew increasingly alarmed as he ran through the evaluation process, but my daughter remained relaxed. I explained that the tests showed us that her left ear wasn’t working. “Yeah, I know that already”, she said calmly, “I’ve been telling you that I can’t hear.”
“I know, sweetie. I know.” My heart broke a little.
There were many emotions that day.
Relief….at having our concerns confirmed and finally knowing what was wrong
Guilt…because it took so long to diagnose her hearing loss
Frustration…that it hadn’t been picked up at school or in the previous test
Amazement…when considering how well she had coped until now
Worry…about the challenges she will face and the unknown path ahead
Pride…in knowing that if anyone can manage this, she can.
The next day we met with an ENT specialist who suggested that we consider a cochlear implant (not typically recommended for single-sided hearing loss). It was a lot to take in and we wanted more time to consider the full range of options. We returned to Jakarta shortly after and followed up some months later in Singapore, where the doctor there told us that if it were his daughter, he wouldn’t do anything.
Between the two doctors, we had more questions than answers and it felt daunting and confusing to be navigating this brand new path with such divergent advice, without any kind of network or supportive community, thousands of miles from our home health care system.
Getting some Clarity
One year on, we are much clearer about things. We sought a third ENT opinion on our last US visit, which confirmed our desire to pursue a hearing aid option that we hope to get soon.
Unfortunately, such devices are more expensive in this part of the world and even with insurance the out of pocket cost is significant. When I found out about this, I immediately started calling around to compare prices – ringing hearing clinics in Thailand, Singapore and even Australia. It seemed absurd in a way – I would never fly to another US state to buy anything – but with limited options here, this type of “medical tourism” is common.
We have also worked with our daughter’s school and teachers to develop and implement classroom accommodations and communication strategies to support her learning and self-advocacy. Catering for this type of individual need is somewhat new for the school, so it has been a learning process for all involved.
Getting by with no support system
Fortunately I now know a few other school families who have children with hearing issues, which is a big help, but I still feel like I’m ambling along in the dark a lot of the time. It is this feeling of isolation which has been the hardest for me.
Sometimes I think that things would be so much more straightforward if we were based in the US and could easily connect with other families, access resources and services, and follow a more predictable path. The logistics of being an expatriate family meant that our daughter’s hearing loss went undiagnosed for longer than it might have otherwise. I still feel bad about this, but I also feel good knowing that our gut instincts were correct and we’re now on the right track.
We don’t know why our daughter lost her hearing. She was a premature twin with low birth weight, which could be a contributing factor – but really, we’ll never know.
The main thing for us now is to protect and maximize the hearing she does have and provide as much support as we can in the journey ahead. She has already selected the color of her new hearing aids (“champagne”) and can’t wait to show us how responsible she is.
If anyone can do it, she can.
As an expat mom do you feel that there are health issues with your kids that might have been avoided or that you could have dealt with better back home?
This is an original post by World Mom Shaula Bellour in Jakarta, Indonesia
The image used in this post is credited to Jaya Ramchandani. It holds a Flickr: Creative Commons attribution license.
