Tuesday, October 02, 2007

Back to the begining...

A deaf blogger that I have recently found is gathering information to write a piece on the newborn hearing screening process. She is specifically interested in examining the options presented to hearing parents of deaf infants, and whether or not ASL is given equal footing with the cochlear implant while discussing communication options.

From what I’ve been told, the hospital where Ethan was born was one of the last in the state to do the newborn hearing-screening test. And I’ve also heard that Ethan was the first baby to be identified with a hearing loss.

Ethan failed the newborn hearing screening on our 2nd day in the hospital. The test was repeated 1 or 2 days later and the equipment failed to work, so we were sent home and told to schedule an appointment for follow up. The nurses told us that it wasn’t uncommon for C-section babies to fail this test, so we didn’t really give it much thought. Two months later, we got a phone call asking us to bring him in for the follow up test.

They did an ABR, which is basically the most empirical form of testing hearing because electrodes are used to show the brain’s response to a wide range of tones and decibel levels.

The audiologist printed the results of the test, but didn’t interpret them for us. Instead we were asked to see his pediatrician or an ENT to test for fluid in the ear canal because she wanted to rule that out since the test looked, I don’t know what she said exactly, less than perfect? The point is, we left with the report in our hands, but being unable to read an audiogram, and having an audiologist choose not to tell us, we were sent on our way having no idea that Ethan was deaf.

We found our way to a different audiologist (in a small local clinic where it was determined that his ears were clear) who looked at the ABR results and told us the news. She handled the situation so tenderly and with great skill and compassion, and then told us that for her it was a first in her career. In 30 years, she had never had to tell a couple that their child was profoundly deaf. My guess is that the first audiologist was also new to the world of delivering hard news.

We were told about ASL and it was presented in a very positive manner. I vaguely remember (because I was shocked and distracted) a story about a young man from our community that grew up here using ASL, even though we have no deaf community to speak of. She also directed us to what she felt was the best location in the state for children’s audiology and explained that they would fit him for hearing aids and could talk to us about the possibility of a cochlear implant.

Once we hit the big city hospital and the medical world, more tests revealed the cause of Ethan’s hearing loss as congenital cytomegalovirus. This was quite a blow as many cmv children go on to experience a wide range of cognitive and developmental disabilities. Blindness and deafness aren’t uncommon, cerebral palsy, mental retardation, and the list continues.

In summary, ASL was presented in a very positive light, but not quite given the same emphasis that digital hearing aids or a cochlear implant received. Had we lived in a city with a flourishing deaf community, might there have been a different emphasis? I’ll be interested to see what Jamie finds, particularly with place and accessibility to the deaf culture as factors.

The rest of Ethan’s story is to be continued…


Kellan Rhodes said...

I'm sorry for you and for Ethan,but he is a beautiful child and I love hearing his story. I know it must all be very difficult for you - you are in my thoughts and Ethan is in my prayers! I'll be following Ethan's story. Thank you.

Hetha said...

Kellan: actually, it WAS hard. We made it through the toughest of times, nothing seems that hard for us anymore!

Kyla said...

I think I told you this, but KayTar passed her newborn screening. I still have the little card they stuck to her bassinet in the hospital. She was 2 before we knew anything was amiss at all. So either she could hear at birth and her hearing has degenerated, or the initial screening wasn't accurate.

I love hearing Ethan's story and seeing his adorable photos. He is such a cutie.

Hetha said...

Kyla: Yes, you did tell me and I don't find it that surprising actually. I've learned from being on the Listen-Up group that progressive loss is more common than congenital profound loss. Even with cmv, from what I've learned it's more common to have a progressive loss over time rather than to start out totally deaf. I'd love to see pics of Kaytar in her hearingn aids!

Anonymous said...

Your straight-forwardness and honesty is profound.
Thanks, Misha