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When Loghan was born, she failed her initial hearing test at the hospital in her right ear. In this post, I will talk about hearing tests in my awesome MOM lingo and the outcome for Loghan. If you’ve missed any of Loghan’s story and want to read more, click here.
If your baby fails a hearing test in the nursery, the nurses will tell you that it is normal, as there could still be fluid in their ears from birth. I’m sure the nurses are always trying to keep things positive given the fact you just gave birth a few hours ago. As new parents, all you want (or at least all I wanted) to do is enjoy your time with your new bundle of joy worry free!
Since Loghan failed her hearing test in the nursery, that meant we had to do a follow-up appointment a few weeks later. For us, that meant a visit to the Ear, Nose and Throat (ENT) doctors at the Talley Building. Once we were all checked-in, we proceeded to a room to complete her Auditory Brainstem Response (ABR) Test. Being that Loghan was a newborn; they did not have to sedate her to do the test as she slept through it.
When they do the test, they put small sensor stickers on areas of her face and place tiny little earphones in her ears. When everything is in place, the audiologist plays sounds through the earphones and the electrodes measure how the hearing nerves and brain respond to the sound. It is rather intimidating seeing your baby hooked up to all of the equipment but two hours later, we were done. One of the reasons it took so long was because they had quite a bit of technical difficulty completing the test. Nonetheless, the test was complete and the results are immediate – she PASSED both ears! I was so relieved!
As time went on and the issues with Loghan continued to pile up, relief started turning into distress as I started noticing hearing discrepancies from one ear to the other. To ensure I wasn’t going crazy, I took a video and sent it to my husband and a couple of close friends. They agreed that they saw what I was talking about, so we scheduled a follow-up hearing test.
This time when the audiologist completed the hearing test, Loghan failed both ears. I was terrified but skeptical because Paul, myself and others all knew she could hear. I was also told that these tests are not 100% accurate and she would need to be further evaluated. YAY, more appointments!
On September 27, 2019, we headed to the castle, yet again, for her ABR Test – this time under general anesthesia. Once they reach a certain age, the hearing test is too difficult to complete when they are awake because they are too squirmy and she is not at the age where she can communicate whether or not she can hear something. We also decided that since Loghan had to be put under that we would get an MRI done at the same time, since with an MRI she would also need to be sedated.
We arrived at the Castle at 7AM, hoping that we would be able to have both tests completed. Loghan had been fighting a cold for two weeks and they told us that she could not have a fever, cough or cold if she was going to be put under. Thankfully, when we met with the anesthesiologist he said she was well enough to do the tests. We hung out in the room trying to keep Loghan happy until the MRI started at 8:30AM. This is a long wait for a tired and hangry baby. She wasn’t allowed to eat after midnight.
Similar to her surgery, we were wheeled down to the room for where the MRI would be conducted, only this time it was in an actual bed and not a wheelchair. Daddy was not far behind but practically ran out of the room when they asked if we wanted to watch her be “put to sleep”. It made me giggle a little bit, but in all seriousness, I totally get it. I laid Loghan’s head down on the giant table and held back my tears as I gave her Eskimo kisses. I then left the room to try to catch up with Speedy Gonzalez, who was already down the hallway on his way to the waiting room.
We had the option to leave and go get food or something since it was going to be a few hours between the MRI and ABR, but who were we kidding, we weren’t going anywhere. We made small talk, surfed the web, chatted with friends and eventually got to the point where I just flat out started to annoy my husband to death, but we got through it.
The waiting room was right outside the room where they were going to do her ABR test so we caught a glimpse of our sleeping beauty in between procedures. This helped ease my mommy heart a little, but time started dragging more and more as the day went on. The last hour was the worst and my patience was running thin. Then, just when I thought I was going to go bust down the door myself, the door opened and they told us everything went well and we could come see her.
Loghan was just waking up when we walked in the room and she was groggy but super cute! I crawled into bed with her and she gave me the, “Where am I?” look. Even though she wasn’t being put under for anything major, it’s still serious business putting anyone under, especially at her age and size. Loghan is such a trooper though and she comes out of anesthesia so well, so that makes it a little easier on my mommy heart.
In the room, the audiologist shared the results from the ABR. I was hoping for the best but expecting the worst. Thankfully, they revealed that she had only mild hearing loss in both ears and that it should not affect her speech. However, they did state that they would like to continue to monitor her hearing and complete another ABR in another six months to ensure the loss is stable and not progressive.
With the ABR results out of the way, the MRI is the last piece of the puzzle in terms of checking out all of Loghan’s organs that could have been impacted by the RERE Syndrome (I will discuss this in a future post). Her heart, lungs, kidneys and bladder all checked out to be in normal working order, however, this was not the case for her brain.
Again, I was hoping for the best but expecting the worst. Her MRI showed abnormalities BUT only mild abnormalities. I will now provide you with the doctor lingo and then translate it the best I can with my MOM lingo. The doctor advised that there is mild thinning of the corpus callosum and an area of a bright signal on one side of the brain, which probably represents where the brain is developing insulation. These are all expected findings for someone with RERE Syndrome.
Now, here is my best interpretation, after talking with her geneticist, to all the scariness above. The corpus callosum helps the right and left sides of the brain communicate to each other. Abnormalities to this part of the brain could affect her speech, walking, coordination and overall development, but we won’t really know much until she gets older. I was told not to worry about this as she is developing nicely and there are people completely missing the corpus callosum that are fully functioning.
These statements might be a comfort to some, but to me they undermine the seriousness of her condition as it relates to her syndrome. I am not trying to be pessimistic but I do not want anyone to create false hope for something that might not happen, like walking or talking. I want to be optimistic and proactive and address the possibility of these things not happening by monitoring her development and by introducing her to the needed therapies early to help her progress developmentally in every way!
So far, Loghan is doing Physical Therapy through Sanford twice a month and was recently enrolled in the Birth to Three and Family Support programs. These are free programs at the local and state level. They will help us get Loghan where she needs to be, including additional physical therapy, occupational therapy and education assistance. I will talk more about the free programs in future posts.
I know I have mentioned RERE Syndrome quite a few times now and some of you might be wondering what that is. If you Googled it, you are probably as terrified as we were, but with any genetic disorder, there are variances in severity. In my next post, I will explain RERE Syndrome and what that looks like for Loghan.