Introduction, Part Three

Continuing…

After the ABR where we discovered that Alex was functionally deaf, Shannon and I were obviously distraught to the core.  His “out of the box” hearing was practically non-existent.

One of the last kindnesses the audiologist gave us was to refer us to a new ENT whom she referred to as “THE guy for cochlear implants around here.”  She even called their office for us on the spot and arranged an appointment; she got us in something like four days later, which is apparently miraculous because this doctor is very sought after.

She also gave us a quick background on our two basic options that we’d have at this point – we could try for a listening / speech approach, or we could go the ASL route.  No decisions were or have been made at this point because we don’t have enough information to make an informed choice, but I’d be lying if I said that we didn’t ask more questions about the hearing / speech approach.  Apparently most of the kids that go through that program have great success in mainstreaming (that is, going to typical schools and basically being brought up to be a part of the hearing world), which was good to know.

Our nights were awful.  One thing that was particularly difficult was falling asleep, because the silence beforehand gives plenty of room for the mind to race.  To make things worse, Alex was still waking up once or twice a night to feed, so we had to go through the process multiple times per night.  Each time we woke up we realized that it still wasn’t just a nightmare that we were waking up from; our child was still deaf.

During the days, much research was done around cochlear implants, including how well they work, how they do with music, what sort of future-tech was coming up, etc.  Again, it was all a compromise, so it was all very difficult to feel positive about.

The day of our appointment with the ENT rolled around.  Our new doctor was definitely an improvement from the last guy – our audiologist had given us a heads-up that this would just be a very quick and cursory check, but our doctor answered almost every question we had accumulated at that point.  It was nice to be able to ask an actual professional questions and get real-world answers rather than reading clinical statistics from Google Scholar.  He seemed rather matter-of-fact about going with cochlears at that point, and most importantly, he said that if that’s the approach we were to take, he’d want to do so as early as possible.  The earliest he had implanted was eight months, but typically he could get them done by nine months.  The FDA currently recommends waiting until one year despite all of the studies that scream “THE EARLIER THE BETTER!”, but the doctor ensured us that he could petition and we’d have a decent chance of pushing it through.

Throughout the discussion, the doctor brought up the term “auditory neuropathy.”  I didn’t think anything of it at the time because it basically sounded like the medical term for “deaf” or “hearing damage brought on by damaged nerves.”  On our way out, the doctor mentioned that he wanted to line up an MRI if possible so he could get a better idea of what was going on with Alex’s ears.  A challenge with this is that it takes something to the order of 40 minutes to complete and requires the subject to stay very still.  No easy task with a squirming infant.  Typically, children are anesthetized, but he wasn’t sure if we could do it with Alex being this young.  Nevertheless, they would follow up and see what the MRI folks would recommend (we haven’t heard back from them yet, but I’ll share that info here when we do).

Later that night, we had our first social dinner outing since having Alex with Shannon’s best friend and her fiancee.  Though we weren’t sure if we would really be able to enjoy ourselves, it proved to be extremely therapeutic.  They asked questions about it.  They offered encouraging words.  They didn’t try changing the subject.  They obviously were interested in what was going on with Alex as well as our well-being.  Basically, it was fantastic, and it’s yet another reason that I appreciate that we have the two of them in our lives.  Yes, some alcohol might have helped as well, but it was great to feel somewhat normal for a few hours.

Again, this good feeling would be unfortunately short-lived.

Shannon brought up that the term “auditory neuropathy” sounded strange when the doctor had brought it up.  I told her my initial thought on it, which was that it was just a fancy term for “deaf.”  We went to sleep for the night.  Alex woke up at around 3:00 in the morning to be fed.  During that time, Shannon and I started looking up the actual term “auditory neuropathy,” which was also present on the ABR report we had received that day.

Our third drop straight into deep depression commenced.

Auditory neuropathy, as it turns out, is a SPECIAL type of deafness (you have to win the lottery to get this, it’s something like 1 in every 100,000 children will have it) with a few terrifying characteristics.

  1. Cochlear implants don’t always work with it, or they don’t work as well.
  2. Hearing aids flat-out won’t do anything for it except for rare cases.  Therefore, putting hearing aids on Alex prior to getting cochlear implants (if we were to go that route) would likely do absolutely nothing for him.
  3. It’s something that’s relatively “new” in terms of being diagnosed, so there isn’t a dearth of experience in treating it.
  4. Worst of all – auditory neuropathy is often accompanied with other issues.

That was the end of our sleep for that night.  We had gone from adjusting to a perfectly healthy baby to a baby with moderate hearing loss to a baby with profound hearing loss to, now, a baby who would potentially not even benefit from cochlear implants AND who was more at risk for having additional health issues.

The latest bit hit us the hardest.  This might be because we’d already endured the previous two hits, so we were already raw.  There was a lot of pleading for the evil to cease.  “Please stop.  That’s enough.  We can’t take any more.”  We began to make peace and accept that we could have a child who would simply not have hearing, and potentially have worse things coming on the horizon.  We’re still trying to make peace with this possibility.

Two days later, we went to Shannon’s mom’s house to spend the day.  It’s always been a boost to the soul to visit for a few hours – Taylor and Alex’s grammy and grampa love taking care of them and spoiling us.  It’s also nice to get out of the house occasionally, especially when you’re sending so many hours writhing in depression within it.  Shannon and I had a good discussion on the way over (as we usually do) about what sort of GOOD things the future might hold, and how that rational thought that we’d deal with whatever came our way and adjust our lives accordingly was worth holding on to even as we were bottoming out.

Upon arriving at the house, the kids were immediately spoiled.  The TV was tuned to Disney Junior, which contains most of Taylor’s favorite TV shows.  At one point, there was a show called “Little Einsteins” on.  It’s basically an educational cartoon that places a lot of emphasis on a few bits of classical music every episode.  While it was on, I was holding Alex, who was resting in my arms, looking innocent and beautiful.  Every time they played a little musical hook was like taking a knife to the heart.  He couldn’t hear this.  Even if he had cochlear implants, he probably wouldn’t hear it with the same fidelity that we could.  I broke down and cried silently on the couch.  I even received the added bonus of feeling guilty about doing it because I know that Shannon’s mom could probably see me, and I highly doubt that made her feel any better.  Certainly one of the lowest emotional moments I had had so far.  In my life.

I think that by this point I had lost something to the tune of 15 pounds in just over a week.

The following day we had another ABR with the hospital we had performed the first one with.  The main objective of this particular ABR was to get a good measurement of Alex’s left ear now that Buffalo Hearing and Speech had gotten a solid reading out of Alex’s right.  I held Alex again while Shannon waited in the hospital waiting room.  Before the audiologist began the test, I gave her an update (suspected auditory neuropathy, profound hearing loss), mostly to encourage her to tell me what she was doing as she went along without worrying that she was going to casually deliver horrific news to a dad who thought everything was AOK.

After about an hour’s worth of testing, we received some interesting news – she didn’t see any sign of auditory neuropathy in Alex’s left ear.  That was somewhat unbelievable, considering that auditory neuropathy is almost ALWAYS present in both ears.  She explained something about a wave V (I’ll try to get more detail on this as it unfolds in case it helps anyone else) and how it wasn’t exhibiting signs of neuropathy.  It might’ve been because it was smooth?  I’ll clarify later.  My hope didn’t skyrocket (or, at least, I won’t let myself admit it), but it was a potential win.  I eagerly asked her if she could re-test Alex’s right ear to scan solely for auditory neuropathy.  She agreed.  Flipping Alex over woke him up, but luckily I was able to get him back down again after about twenty minutes.

She couldn’t find any signs of neuropathy again.

The testing concluded and Shannon was brought into the room to discuss the results (I specifically asked for this to make sure she could hear everything the audiologist had to say as well as have the opportunity to ask questions).  She re-iterated that she couldn’t find any signs of AN, but she also didn’t have the report from Buffalo Hearing and Speech that might’ve shed some more light on what THEY had seen.  Again, I tried not to get my hopes up too much.  We had been told that Buffalo Hearing and Speech had the latest and greatest equipment, so maybe they were looking for something different than the hospital was.  Our souls had already been squashed three times in the past two weeks, so this the prospect of any hope just felt like a cruel setup.

The audiologist went on to answer all of our myriad questions.  She had previously been involved with the early intervention program, so we got to find out a lot of great information about the two tracks – one for auditory / verbal, one for ASL.  We discovered that the ASL track was actually more based on total communication (so ASL, speech, hearing, lip-reading, everything available) which made us feel better about that program.  It was pretty informative.  She was also kind enough to give us the opportunity to email her the ABR report stating that Alex had auditory neuropathy so that she could take a look, and she promised to get back to us with her input.  She did so a few days later and stated that she didn’t read anything on the report that would make her back her opinion out that Alex was free and clear of AN.

At this point, I think we’re basically caught up in terms of diagnosis.  We don’t know if Alex has AN or not.  Over the past few days I’ll admit that I have some hope that he doesn’t have AN on the basis of the latest ABR as well as a few things that we thought were odd that the audiologist agreed with – namely, that his OAE test was always coming back as negative.  With AN, an OAE typically shows as normal for a period of time and then goes to abnormal, but that takes a lot longer than the ten weeks that Alex had been around for.  Typing this, I can feel the letdown that I’m already setting myself for, but I guess we’ll just call it cautious optimism.

We haven’t heard back from our doctor yet regarding Alex getting an MRI (step one in determining whether cochlear implants would work for him).  We have our first early intervention meeting scheduled this week, but that’s just going to be boilerplate.

At least we’re moving.

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5 thoughts on “Introduction, Part Three

  1. I’m so sorry to hear how traumatic this has been for your family. And although I haven’t gone through this with my own children, I’ve learned quite a bit about the Deaf during the past year.

    I’m a 45 year old, hearing college student that just completed 2 semesters of ASL. I learned quite a bit about Deaf culture and ASL. Please please please put a great deal of thought into your decision to go with cochlear implants- they’re not magic, and not only do they often limit one’s ability to connect with their culture, the quality of “hearing” is often poor.

    Immerse yourself in ASL, stop by St.Mary’s and learn about ASL and how important it will be for Alex to be part of the deaf culture when he’s older. I won’t pretend that I know what you’re going through but sometimes it may be helpful to have someone removed from the situation offer clarity.

    I strongly suggest you watch the following movie…
    http://www.pbs.org/wnet/soundandfury/

    You and your family are in my thoughts and I hope you find peace soon!

  2. Thanks for the note, Darrell!

    A few points of clarification – we have no illusion that cochlear implants are going to give Alex normal hearing or that what he might pick up will be of amazing quality. I’ve immersed myself in research around the three implanters and even what’s coming down the road (brain stem implants, stem cell / gene therapy, etc). We’re definitely aware of what implants are and aren’t at this point.

    What is most important to us, at this point, is to give Alex every conceivable opportunity and advantage. What’s really driving us toward the implants (if we’re even eligible) for them at this point is that Alex has a window of opportunity to join the hearing world (even if the fidelity is inferior to what we’re used to). If he takes to them well, then that’s a world that’s now opened to him, for the rest of his life. If we wait, the window closes for him to take maximum advantage. Alex isn’t even three months old, and today’s technology is already incredible. Imagine what might be able to be done for him in even just the next ten years if he wants to continue a path toward improving his hearing.

    All of that said – the family is learning some basic signs now and using them in front of Alex. Our attitude isn’t one of rejecting the Deaf community, at all, it’s based around doing every possible thing that we can do for our son.

    We’re definitely going to check St. Mary’s out. That’s the TC side of the early intervention program if we go that route (and he could very well end up there even if he gets implants).

    Again, thanks for the comment.

  3. Andy- Thanks for the clarification! I admire that fact that you and your wife have immersed yourselves in research- after all we only want what’s best for our kids! I look forward to updates about Alex!

    • We want to do both, but preferably have Alex’s primary means of communication be oral. ASL will absolutely be learned for the reasons you already mentioned (the implants are out, the batteries die, the noise is too much, etc), though we have to figure out when to introduce that without it hindering his oral development.

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