Thursday, October 18, 2012

Hearing Update

This is long overdue.  So if you will remember back with me, Phoebe was born with a mild unilateral hearing loss in her left ear that was diagnosed as a newborn.  We have been back for many follow-up appointments and had many tests and recommendations made to us over the past 14 months.  Since she was about 3 months old they had been wanting us to do a sedated ABR test to determine if her hearing was degenerating or not.  We were hesitant to do so because of the invasive nature of the testing.  But long story short after going in to the ENT for non-invasive earning screens every 4-6 weeks (which was completely miserable by the way and a waste of time in hindsight) they got very insistent upon repeating the ABR.  Basically some of these non-invasive tests seemed to be indicating that her hearing was worsening in her left ear and that she also had developed some loss in the right ear.  Chris and I were still hesitant but after several lectures where they basically told us if we didn't intervene now she might never be able to catch up (still not sure if that is true or they were just saying whatever they could to convince us to see things their way) we acquiesced.

So just before Phoebe's first birthday we took a trip over to Scottish Rite for this hearing test.  And it was traumatic- at least for me.

Here's Phoebe waiting to go back into the OR.  They had all sorts of fun toys to play with in the pre-op area.

They let me walk back into the OR with her and lay her on the table.  She was real curious at first, but as soon as they laid her down and put that mask over her face to sedate her she started screaming and fighting and they had to hold her down.  At this point I am in tears and next thing I know they are whisking me out of the  OR as her eyes are getting heavy.  All in all, she really wasn't in there long.  Chris and I waited in the recovery room for what felt like forever, but I think it was just under an hour.  When they brought her out she was hysterical and inconsolable.  Apparently the anesthesia can give them really bad gas, so that is what I think was bothering her.  She finally calmed down; they took out her IV and we actually got to leave much sooner than I expected.  She was fine the rest of the day- acted like nothing abnormal had happened that morning.

After the test we spoke briefly to the audiologist and my understanding was that her hearing had not significantly changed.  Wrong.  When we got the dictation report in the mail about a month later, sure enough her hearing in her left ear had worsened.  Thankfully her right ear is still unaffected.

When we followed up with the ENT she is still not recommending a hearing aid, which we were happy about.  She said that most children with unilateral hearing loss don't like the aid and tend to pull them out.  Unless she ends up having trouble in school down the road or her right ear starts to show some problems, we will not need to go down that road.

Because hearing loss can be associated with heart problems and eye problems, the ENT wanted us to have an EKG, CT scan, and follow-up with and optometrist.  Apparently there is some severe retina problem they are potentially concerned about, but she is too young to test for that at this point- or at least to test her without putting her to sleep.  (Yet, they still want us to see an eye doctor now so they can start following her) Honestly, I didn't really understand all the potential eye problems, but I'm sick of doctor's appointments and co-pays right now so we haven't made any efforts to see an eye doctor.  I did want to do the CT scan to make sure nothing was obviously structurally wrong and we agreed to the EKG because it is quick and non-invasive.  Actually the EKG took all of 20 minutes from the time we walked in the office to the time we walked out- it was great.  And everything looked normal.  For the CT scan we were prepared for them to start and IV use light sedation (nothing like the gas mask in the OR with the ABR), but they agreed to try without  sedation first and Phoebe cooperated and laid still.  So that was also a quick and easy test.  And again thankfully it came back normal.  (So really, what are the chances there is really anything wrong with her eyes?)

Because the EKG and CT scan were normal they are assuming it is a genetic hearing loss.  We could do testing to determine the responsible gene, but honestly I don't care what gene is responsible.  Its not like knowing the gene is going to fix her hearing...  Remember punnett squares from biology?  Well, because hearing is a recessive trait the chances that future children could have this same genetic hearing loss is 1:4.  I did take a genetics class in nursing school...I should probably remember some of these things.

Anyhow, our little girl is healthy and her language has really taken off in the past month.  She's certainly not ahead in talking and language development by any stretch of the imagination, but she does say about 10 words.  Not too shabby.  The ENT wants to repeat the sedated ABR at 18 months.  I'll tell you right now there is no way we are doing that.  Maybe we'll consider it at 2 years old and then by 3 years old the booth tests should be relatively accurate because she will hopefully be able to tell you when she hears all the test noises.  If we do it again at 18 months, she will just want to repeat it again in another 6 months and there is no good reason we need to sedate Phoebe every 6 months to check her hearing "just in case its gotten worse"

Pretty soon there will probably be a label on Phoebe's chart: "non-compliant parents"  Oh well.

1 comment:

  1. that sounds so hard to sit and wait and watch her go through that!! I'm so glad that the results came back good - she is adorable!


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