Thursday, April 28, 2011

Lose-Lose (Subtitle: Maya's mysterious ears)

A month before Maya turned one, she had her adenoids removed.  (She was so innocent and little!)

Two months before she turned two, she had ear tubes put in.  (She was semi-innocent and semi-little.)

And soon she'll be 3 (May 30th---it's coming so soon!).  I was really excited when I realized that this would be the first year that she wouldn't be sedated for any procedures . . . except now she will be.  Not until after her birthday (we don't have a date yet, but it's looking like July-ish) . . . but this will be a big one, somewhere between 1.5-2 hours of sedation. 


She'll be having an ABR (hearing test) done.  She actually already had one done . . . back when she was itty bitty (12 weeks).   Here is her full, confusing, unclear hearing story:

At birth, Maya failed the newborn screening in both ears. She had some fluid issues during delivery, so we thought he ears might just be gunky. Before we were discharged they re-screened her and she failed in the left ear, passed in the right.
Two weeks later, we went to the hospital to get rescreened. Again, she passed in the right ear and failed in the left. Her eardrums reacted normally in both (this means that fluid in the ear didn't cause the failure in the left ear). At this point, we weren't concerned---she reacted to sounds, turned to look towards the source of a noise, etc.  We thought the tests were silly---she had tiny little ear canals, and the little buds kept slipping out, so it seemed like she would obviously fail.

My ear canals are too tiny for your silly tests.

At 12 weeks, she had the ABR. In this test, the child has to remain asleep and perfectly still----little earbuds send noise into the ear canal, and electrodes are attached to the head to measure whether the brain reacts to the noise.

12 weeks, during the initial ABR.  Yes, we take pictures during everything. 

Several times, the audiologists came in from the monitoring room to check the leads, which Dave and I saw slipping out periodically. When they told us that she seemed to be failing, we asked them to double check the buds and connections again . . .  and then she passed. They were very suprised and said that they don't typically see infants who keep failing on one ear, but then have a normal ABR. 


(Well, kind of)

Fast forward 2.5 years and she has never passed an in-office hearing test at the ENT (OAEs).  Ever.  Sometimes one ear passes, but she's never passed a single one in both ears. It's a mystery. Because of that, our ENT (who is amazing) regularly sends us down to NY Eye & Ear Hospital to have "behavioral testing with 2 audiologists".  This test relies on the Maya's behavior to let the audiologists know what she hears---she has to look in certain directions, at toys that light up, etc.  The problem is, at some point, she's had enough, melts down, and the test end abruptly.  We've gone for testing 4 times now, and for the first three the results were always like this:

Audiologist:   "Ehhhh . . . the data that we were able to get looks mostly normal, but we weren't able to get everything that we really need to.  What do you think about her hearing?"

Me:  "I think she hears.  She understands when I talk to her, she identifies things in books and follows directions.  I don't know if her hearing is perfect, but I know it's functional."

Audiologist:  "Ok, that makes sense.  Come back in 4-6 months and we'll see if we can try again and learn more."

Unfortunately, when I took her a few weeks ago, she was a mess. Scared, panicked, screaming screaming hysteria that was constant and so loud that the noises she was making were louder than the volume of the tones they needed to test her on, so they couldn't get much data. They couldn't get any data at all on the left ear (which is the one that I'm concerned about).

So we were left with a choice:  Do the same as always, and try again in a few months, or repeat the ABR.  The problem is this:  an infant will sleep soundly through an ABR .  . .  3 year old Maya will not.  So she'll need to be sedated for the entirety of the test (1.5-2 hrs).  And that sucks, which is why we haven't done it within the past 2 years.  We've thought "She certainly hears well enough!  Does it really matter if she has minor loss in one ear?"

But now some things are different . . . a very smart audiologist friend of mine (thanks, Amy!) pointed out that while she may hear me seemingly perfectly in our quiet apartment, she'll be in a noisy school come September.  Some minor hearing loss can be easily addressed with simple devices in the classroom . . . so now would be a good time to really know, once and for all, what her hearing situation is.  Yesterday I met with the ENT, and he agrees.  It will likely be scheduled for sometime in July.

The worst part about this test is that it feels really lose-lose.  Either:

a) Her hearing turns out normal.  I feel terrible for putting her through sedation a fourth time, which is miserable for her.  I'm sad that we've wasted so much time on appointments for hearing that turned out to be totally normal in the end.  Lose.


b) Her hearing turns out not normal.  I feel terrible for missing the oh-so-very-clear signs that were literally present from day 1 (failed screenings, failed tests, not speaking at all, etc).  Hindsight will make a million things seem like a neon flashing sign "Mom!  I can't hear you!  Help me!  This is really easy to fix!"  Lose.


At least we'll have clear answer, though.  The time has come to figure it out for sure.


Anonymous said...

We had a lose-lose surgery, with H it was for her fundo. We were either going to regret having done it, or regret not having done it sooner. Same thing you are saying, and either way it feels like you have missed the mark. Hence the lose-lose. In any case, it will be so good for you to finally just know already and go to the next step, whatever that may be.

Erin B said...

Sedation is always scary so I understand the concern. Our daughter has had a very similar hearing history with several "couldn't get all we need" ABR's during natural sleep. The sedation will help in that they'll be able to make it through the entire test. Remember we as parents do what we can with the tools we have available. Don't feel bad about not doing this sooner.

snyder.jodi said...

I think having a clear answer is a win. I'll be praying for little Maya under sedation.

Nancy said...

As someone whose hearing loss wasn't diagnosed until the age of 2.5, having a clear answer is definitely a win-win. As my parents say, knowing was half the battle. There are so many unknowns in Maya's case, won't it be nice to have a clear KNOWN? I'm sure you know plenty of people with deaf kids but if you have questions, feel free to hit me up.

Katie said...

I am sorry that Maya has to be sedated again. My daugther is 17 months old and has been sedated alot due to surgeries and an MRI/ABR. So I understand the scariness of having to put your child through that. We though Riley was hearing fine she would response to sounds and such but it turned out that she has moderate hearing loss in both ears. She nows wears hearing aids and is making some many more sounds and responsing so much better. i hope things turn out ok for Maya