CI for infant with SSD?

[Henrys Hearing]

Hello!

 

I have a 10-month old with unilateral EVA. He was born with mild-to-moderate hearing loss in his left ear, which has now progressed to profound hearing loss. His right ear still has normal hearing and showed no signs of EVA in the MRI he got when he was 2 months old.

 

As you all know, CIs were relatively recently approved for infants with SSD in the US. My husband and I are contemplating whether or not to get a CI for our son, Henry.

 

My question for all of you (particularly those with SSD) is: if your parents had the opportunity to get you a CI as an infant, would you have wanted them to do so and why?

 

We've read as much research as we could on the topic, but have no experience with hearing loss and would really love advice from those of you who have SSD.

 

Thank you!

[AnnetteT]

HI @Henrys Hearing, I can share my experience and hope that it helps even thought it is not directly applicable to your situation. While I had normal levels of natural hearing until my late 30s and early 40s, my parents did say that as an infant I had a period where I was not responding to very loud sounds and they feared that I was deaf like my grandfather (and I may have been as when I did finally start to lose my hearing, it fluctuated wildly up and down over a period of five years before settling into profound to complete loss in both ears).  Their prayers were answered when I suddenly started responding to sounds. Regardless, this story has helped me to be so grateful for my childhood of natural binaural hearing during a time when my parents had no health insurance and cochlear implant research was itself in its infancy--whether or not this was a false alarm or real hearing loss, I will never know since my family couldn't afford non-critical medical care. I tested normally later on during elementary school hearing screenings. I did eventually lose my hearing (as did my mother later when I was a teen), but the impact of losing hearing later in life after completing school, college, and establishing a career was completely different than it would have been earlier in our rural resource-strapped school system (we had several classes with two grades in one classroom with a single teacher and I'm pretty sure that we didn't have any social workers or special education professionals).

While an implant would not have been an option for me due to my birth year, had I had long-lasting hearing loss as an infant and had the technology been available, I think that I would have wanted to have been implanted.  My hearing loss has been asymmetric, so I lived for over a year being functionally SSD. Everything involving hearing during that period was hard--especially geolocation of sounds and hearing in noisy environments (meetings, which might be somewhat analogous to school for a child with SSD, were torture). I am now back to having single-sided hearing with a CI (after losing almost all of the rest of my hearing in my "good" ear) and can't wait to have my second surgery to become binaural again. :). I also would have wanted my parents to have made this decision for me rather than waiting for me to come of age because of all that I've read about how people who have waited a long time for a CI have had mixed results (with some being considered ineligible, some not having positive results, some doing moderately well, and some doing very well). 

Regardless of my experience, I would respect any decision that you make as I can tell that you are doing a lot of research to make the best decision for your son ❤️. No matter what you decide, he will do well because you are there to support him!

[Kylie]

I can only speak as someone who lost one side of hearing as an adult, not as a child. It was as terrible experience and I felt so lost only having 1 working ear. It was much harder to function e.g. everything sounded dull and flat and quieter, I could not locate where sounds came from, I couldn't hear people behind me, had trouble hearing in crowds etc. I then had a CI implanted 3 years ago and now it's so amazing and I can do everything! 

If I had a child with one side hearing loss I would definitely consider a CI as soon as possible. I would want them to experience the whole richness of sound to help them develop and thrive. There is so much to be gained having 2 sides of hearing compared to 1.