So, some of you know that Hannah has a fluctuating hearing loss that's recently gotten worse. And I've had some interesting questions and comments about it. "Can she not hear me when I talk?", "She seems to hear fine", "I've never noticed her not hearing". So, those are fair comments because really, she does so well most of the time. So here's my understanding of all this with what I'm sure is probably an oversimplified and maybe not totally accurate biology / anatomy lesson thrown in. If you want to skip the anatomy and personal history - just go the last two paragraphs. :)
First, many young children get lots of ear infections. That's why tubes in ears are so prevalent. And besides true "infections", many young kids have fluid collect behind their eardrums. That fluid can cause a temporary hearing loss until it drains out. It drains out through our eustachian tubes. Most of our Eustachian tubes angle downwards to help the fluid drain out. But in very young kids, the tubes are closer to horizontal. That's why they tend to get fluid "stuck" behind their eardrums and sometimes that fluid gets infected. So sometimes, doctors put tubes in their eardrums. Then when the fluid can't drain down the eustachian tube, it drains out the tube. As kids grow older (and bigger), their eustachian tubes begin sloping more downwards and fluid can drain out the normal way. And while anyone of any age *can* have an ear infection, this all explains why it's more common in younger kids and why many kids seem to outgrow the problem as they get older.
Remember this diagram from school? (except we called those 3 bones in the middle ear the hammer, anvil, and stirrup)
Now, kids with cleft palate have some anatomy differences besides the obvious hole in lip / roof of mouth. Their eustachian tubes are also more horizontal at a young age. And they also begin to slope downwards as they grow. But it takes much longer on average for them to slope downwards enough to outgrow the collection of fluid behind their ears. Besides that, their eustachian tubes don't always work as well. It's called "eustachian tube dysfunction" and it happens to other kids too. It's just fairly prevalent in kids with clefts. Think about how you may "pop" your ears when they feel stopped up. Hannah can't do that and it's because of the eustachian tube dysfunction. Interestingly, I've recently heard that sometimes Asian kids also take longer to grow out of this eustachian tube dysfunction. If so, then Hannah has 2 factors coming into play there.
Most kids with clefts see ENT regularly, especially at younger ages. All our visits to the cleft team include a check by ENT and audiology and that's pretty standard. But we also see them a lot more often than the whole team. So - to make a really long story short, here's the basics of what happened. First, Hannah had fluid in her ears due to the eustachian tube dysfunction. Tubes were placed in her ears. They lasted 3 years. They never fell out like they were supposed to. They worked mostly well and hearing was normal / borderline normal during those 3 years. Sometimes they got blocked with wax and then her hearing would temporarily decrease until the dr. cleaned the wax out. But mostly she was fine. After 3 years, her ENT removed the tubes surgically because when left in that long, they can start to cause more problems. When they were removed she was left with a hole in each eardrum that never healed - something that happens to 2-4% of kids with ear tubes. BUT, the holes were a blessing in disguise and acted as "natural tubes". Hannah kept those holes for 2 years and during that time she had a fluctuating hearing loss that fluctuated between normal, borderline, and mild loss. A year and a half ago (at 8 years old), her ENT repaired the hole in her left eardrum. The repair went beautifully and Hannah has a perfect, complete eardrum. BUT, it immediately developed fluid again. And slowly over the last year, her hearing has decreased, in both ears. It's been fluctuating between borderline, mild, and dipping occassionally to "moderate" loss.
Well, last month she had what seemed to be a pretty bad double ear infection. And I knew her hearing wasn't good then. But after several rounds of antibiotics (oral and drops), and having her ears cleaned and suctioned (as fun as it sounds), they finally cleared up. And interestingly, the final word was that as bad as her ears were, neither one was a true middle-ear infection (which is what she's gotten in the past). The right ear had a piece of an ear plug that had broken off and gotten stuck inside (no wonder she couldn't hear!). And the left ear was an outer ear infection / swimmer's ear. And it seemed to me that her hearing improved when all that was cleared up. So, we went back to the ENT Tuesday just for the purpose of checking that this ear infection was in fact gone. And it was completely cleared up. That's the good news. Hannah will be 10 this week and is pretty much past the age where many kids with clefts are able to have workable eustachian tubes. So, the ENT went ahead and sent us to audiology to check her hearing and ear pressures. If all was good in the left ear (the one that was repaired), he would schedule her to repair the right eardrum.
But, all was not good. She still had a flat tympanogram (fluid) for the left ear. And her hearing test for *both* ears was the worst they have been. Now, the good thing is her "bone conduction" tests are normal. That means that when a device is placed against the bone behind her ear and sound is delivered that way (bypassing her middle ear), her hearing is normal. That indicates that her hearing loss is "conductive" which means it's a problem in the middle ear, not a problem with her inner ear and nerves. The good news is most conductive hearing losses are not permanent and many can be fixed medically. So..back to the ENT (just across the hall) who of course said he would *not* be scheduling Hannah for repair of her right eardrum and instead, it was time to put a tube in her left eardrum again. There are risks with that because he's going into an already repaired eardrum. But at this point, the risks of not doing it are greater. He thinks her hearing may go back to almost-normal in that ear with the tube. I asked why her right ear had just as much of a hearing loss. He said it might still be a little inflamed from the infection last month but also the longer she had a hole, the more likely her hearing could get worse. But the solution to that is to repair the hole, which he can't do because she still hasn't outgrown the eustachian tube dysfunction. If he repaired her right eardrum now, he'd be in the same position of having to go back in and put a tube in again. The hope is she might be nearing a growth spurt sometime in the not-so-distant future and the increased growth could finally help her eustachian tubes. But we will wait a good while before attempting another repair.
What this means is that her hearing will likely continue to fluctuate for quite some time. And as it's been fluctuating at a greater level lately, it's very likely that will continue at least for the right ear. The left ear may fluctuate more mildly after the tube, but that remains to be seen for sure. So, how bad is her hearing? Her hearing at the lower frequencies went from "moderately severe" at the lowest to "moderate". At the higher frequencies it was "mild" to "borderline normal". This means she has a harder time with lower frequency sounds. Interestingly, people tend to whisper at higher frequencies. So sometimes, Hannah might hear something as soft as a whisper. But other times, she doesn't hear something that seems so clear to others. There are certain speech sounds she hears fine. But she has trouble with other speech sounds. She misses word endings often (and has even when she had a milder loss). So for example, she may not know if you said "she walks" or "she walked". When you have a face-to-face conversation with her in a somewhat quiet environment, she may hear everything you say. But the farther away from you she is, the more she will struggle. The more background noise there is, the more she will struggle. Also, she may struggle more later in the day. Sometimes, she *can* hear things but it takes a lot more focus and attention than it might for others. So that could explain why she's often tired at the end of the day. Even last spring, she'd get in the car after school and need some "down time" before she could engage in conversation again. She does well, but it takes effort. She's also pretty good at using context to figure out what she might have missed. She does this naturally without always realizing she missed something. For example, if I say "Hannah go upstairs and brush your teeth" - she may hear most but not every sound in those words. But because I've said that to her often, her mind "fills in" what her ears might have missed. This works pretty well for topics that are familiar. But for novel topics, it becomes difficult. If you took your favorite book that you've read several times before and this time you could only see 4 out of every 5 words, it would be a little of a challenge. You might have to put some effort into reading it, but you could probably get through it and understand it well because it's so familiar to you. But then imagine taking an economics text book (unless you're an economics person) and being able to only read 4 out of every 5 words. For that 5th word, you might even see half the letters, but because the word is a new, unfamiliar term, you can't quite figure out what the word is. It would be much harder to comprehend. Then imagine that there were lines and arrows drawn all over that book that pointed to phrases written in the margin that had nothing to do with the book. It would be distracting. That's kind of like Hannah trying to listen to her teacher in class teach new information while hearing the kid behind her shuffling papers, the air conditioning, the kid giggling beside her, etc. It's a lot to sort out and takes a lot of effort. Add to that that her hearing loss if a "fluctuating loss". So some days she really might hear "just fine" (relatively). But other days, it only appears that she is hearing fine, when in fact she is not. So that pretty much sums up Hannah's hearing. She will have the tube placed in her left ear mid-September and I hope that will help. Meanwhile, we're working on some other strategies to help compensate in the meantime.
And how has Hannah handled on this? Well, it depends. She's highly irritated over the fact that she needs a tube in her left ear. On day 1, "irritated" wasn't really the right word. "Furious" might be more accurate. She says it makes no sense because she had a perfect eardrum, then "we" (because you know, I was totally "helping" and it's my fault according to her!) created a hole when we put a tube in, then we took the tube out, then we fixed the hole, and now we want to PUT A HOLE BACK IN THE EARDRUM?? Yeah, I kind of agree. Makes no sense when you look at it that way. But it is reality. And she's better with it now. (i.e. "irritated" rather than "furious".) But the news that she has a more significant hearing loss? Doesn't bother her at all. I mean, her hearing is no different after being told than it was before being told. It all just seems normal to her. And in the grand scheme of things, this is not a major problem. It really isn't. She will need a little help especially in not missing instruction at school. That's all. But it's totally "doable" and she will go on with her singing, laughing, flipping, dancing "tween" self. Her birthday coming up this week is a much bigger deal. As it should be. :)
