Sunday, May 9, 2010

Hydrocephalus vs Hearing Loss

Since birth, Carter hasn't ever been able to pass a hearing test. At 6 days old the hospital gave Carter a hearing test and he failed. They came back with a more intense hearing test which he also failed. The hospital staff said "Carter is deaf, he'll be deaf forever, we're sorry" and left the room. It was heartbreaking, we were prepared for deaf but oh how we weren't prepared to hear those words for real.

So we took home our deaf newborn and we treated him like he was deaf, he really never responded those early days like he could hear. Then our wonderful home health nurse (who has worked with Hydro babies for 20 years) came in and I cried to her about being deaf, she said "he's probably not deaf, every Hydro baby I've ever worked with starts out that way until their pressure is under control" that was hopeful news but we still thought he'd probably be deaf forever.

At about 3 weeks old, I yelled down the stairs to Jordan while Carter was asleep in the next room and he startled awake, we just thought maybe he felt the vibrations. After that he would startle at any loud noise and a few weeks later he was responding to even a quiet voice. We had proof that he WAS NOT DEAF. But to this day Carter can't pass a hearing test.

Carter's been through all the hearing tests: AOE, BEAR, booth, sedated, non-sedated, blah blah and he fails all. So on his medial record says "profound deafness" but Carter can obviously hear. He responds to everyone who speaks to him, he looks to his name, he copies some words, he loves music. He dances to music that I don't talk about, he can hear.

So last week his ENT took him into surgery for Tubes. He said that is the first step to rule out any fluid. (lets face it, fluid is usually the problem). His surgery went well, they scheduled him to stay the night for observation because he usually dies during surgery. But this time it went better then expected. He was on his way home 1 and a half hours after the surgery. Wahoo!

So next step...another hearing test. If he doesn't pass that then he'll have to get hearing aids. If then he doesn't pass then he'll have to get implants. I'm extremely against implants because it destroys any and all natural hearing that he has. The ENT said that he cant hear at all, but I strongly disagree. Everyone who knows him strongly disagrees as well. So stay tuned for the implant battle.

Hydro Mom Tip: As a newborn Carter come out deaf because of the pressure. The more people I talk to, the very common this is. A lot of our little hydro friends have grown out of it or only need hearing aids. I am so glad we didn't get implants like we were advised from our audiologist.

4 comments:

One Big Happy Family In Utah said...

Silly doctors ... think they know more than parents!! When will they learn.

We're so excited for Bug's HUGE strides - literal and figurative. Keep it up!

Renae said...

You and Carter both continue to amaze me. I made it through this post with just goosebumps, watery eyes & a small lump. This is progress! :) I can't wait for the updates.

Bailee said...

What are tubes? My daughter has hydrocephalus and has not passed two hearing tests. They say it is her inner ears with problems.

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