Thursday, October 30, 2008

How did we find out?

Ben was born at 8:21 pm on Friday, October 19, 2007. It was a terrific day -- everything went smoothly, and we were so thrilled to hold him in our arms.

The next day, he was given a newborn hearing screening. He failed. Strictly speaking, he was "referred" -- meaning that the machine showed no response and he would need follow-up testing. (They don't like to call it "failure".) The nurses assured us that there was nothing to worry about. He might still have some gunk in his ears from birth. He probably squirmed and disconnected the electrodes. We had plenty of other things on our minds and we were more than willing to believe their assurances, so we took their advice and didn't worry.

On Sunday, they tested him again, and again he was "referred". Again they told us not to worry, and again we were happy to comply. We were discharged that day and told to come back in a week for another test. In the meantime, we convinced ourselves that he was reacting to sound and that everything was fine.

By Wednesday, we were having problems with latch-on and so we made an appointment with the lactation consultant at the hospital. She was terrific; she showed us exactly how to handle the situation, and with a few weeks of careful training, Ben became an expert nurser. While we were there, they tested his hearing again. You can guess what happened.

So we called and made an appointment for a more comprehensive hearing evaluation at a facility in Buffalo. They couldn't get us in until December. While we were still bravely trying to follow the nurses' advice and not worry, we knew we couldn't keep it up for that long. Fortunately, our college has a hearing and speech clinic, and one of our colleagues offered to perform a hearing test within a few days. We took him in, but he was too squirmy and noisy to get an accurate reading. We brought him back in a few days later. He failed.

By now, we were no longer in denial. We knew something was wrong. Our colleague sat with us in the quiet testing booth while it started to sink in. I couldn't concentrate on everything he was saying, but I remember that he used the phrase "cochlear implant". I think I had heard of this before, but it was completely off my radar screen and I didn't know anything about it.

At this point it seemed like he had some sort of hearing loss, but the test our colleague performed (an otoacoustic emissions test, or OAE) couldn't tell us the degree of loss. The place in Buffalo would perform a more comprehensive test (a diagnostic ABR, or auditory brainstem response test), and it turned out that they could reschedule us for November 15.

So, on Thursday, November 15, we took Ben for his diagnostic ABR.

It wasn't good.

It was very bad.

He was profoundly deaf in his right ear, and severely-to-profoundly deaf in his left. We knew he was deaf, but to have it confirmed and to have it be so bad....

After the test, we stood in the rain in the parking lot, and we cried.


elizabeth said...

Great blog! I hope you'll consider adding it to the aggregator at Deaf Village ( -- we'd love to have you as part of our community!

Julia said...

Thanks! I'll consider that. Deaf Village already has so many great blogs, and I might feel a little self-conscious if I throw mine on the pile. Some of the people on cicircle recently put together a great website with links to parent blogs, too.

I'll see how my blog develops and decide whether to put it on Deaf Village.

Landry said...

That sounds so much like our story, too! We're excited to keep up with Mr. Ben-thanks for letting us know about his blog! Is it ok to add him to Landry's blog list?

susannah said...

reading this entry sounds so similar to our experience too- the reassuring nurses, the multiple tests, the cloud of emotions upon finding out...

Julia said...

Feel free to add him to Landry's blog -- we'd be honored!