1st ABR at UCLA Audiology
After Ruby failed her newborn hearing screening at the hospital, they referred us to an audiology appointment scheduled at UCLA a month later. On July 7th, we took Ruby in for her full diagnostic Auditory Brainstem Response test.
Because the baby needs to be asleep for the test, we were told to keep her awake beforehand and not feed her so that we could feed her right before the test and get her to sleep. This was harder than it sounds! I was so used to feeding on demand that it seemed horrible to withhold from her. In addition, I had to continuously poke and prod her in the car on the way to UCLA so that she didn’t fall asleep. I seriously felt like I was torturing our little one.
When we arrived, we were told to feed Ruby. As we fed her, the audiologist prepped her for the test by putting some “electrodes” on her forehead and by her ears. She then also put headphones (this time they looked like clip on earrings) on her ears. When we were done feeding, we put her in a little bassinet and tried to get her to sleep. When she fell asleep, they started the test.
The audiologist had people training with her so as the test was given, we just heard whispering amongst them. They did not explain what was going on at all. All we could do was sit quietly by and guess what was happening in our minds. We could hear the clicks and pulses get louder and louder. And as the pulses got louder, and the whispers between the audiologists get louder, our anxiety grew. Why wasn’t anyone telling us what they were doing or what they were discussing? Was everything okay? Finally, the audiologist told us that she failed in her left ear again but that we still shouldn’t worry because they would test the right ear and then re-test the left ear again as there could just be a problem with the test. So, the test continued in silence as we heard the clicks and pulses. This time, my anxiety level had hit a new peak. They told us that her right ear tested normal and that they would go ahead and re-test the left. As we sat nervously by listening to the ever growing clicks and pulses, all we could do was try and decipher the looks on the faces of the audiologist and her trainees. Finally, the audiologist started to speak. I was hoping that the first go around was just a mistake and that they found she was perfectly fine. Turns out, she failed again in the left ear, and this time, there was no “don’t worry” or “this happens all the time”. I started to feel a pit in my stomach. This is something you do NOT want to hear.
The audiologist did say however that there was still a possibility that something could have been physically blocking the soundwaves from going through (which was our hope, of course). Therefore, they were going to perform a Bone Conduction ABR test in the left ear to see if there was any response when sound is transmitted through the bone versus just through air. This would rule out if there was any blockage or fluid causing the hearing loss. They placed an additional node type thing on the leftside of her forehead and began the test. My heart was pounding and I had NO IDEA what was going on… all I could do was keep my fingers crossed. After the test was complete, the audiologist quickly mentioned that Ruby also failed this test and that she would go over the results with us. What?! I don’t understand. What just happened? And why doesn’t this seem like a big deal?
As the audiologist sat down with us to go over the results, I started to feel a bit ill. The pit in my stomach had grown larger and was now making its way up my throat. She told us that Ruby had a profound sensorineural hearing loss and that it would not get better. Period. End of sentence. And that’s pretty much all I heard as my eyes welled up with tears. The rest of the explanation of results pretty much went over my head as I sat there in shock. The audiologist was speaking but I could not actually hear or understand anything she was saying. The words she was using were so foreign. Profound? Sensorineural? What? Bone conduction? Genetic testing? Before long, all I could do was see red. I wanted to punch her in the face (joking, sorta). She went on and on about how Ruby will need early intervention and how it could be a genetic disorder that affects her kidneys or her heart, and yet, she didn’t make it seem like it was too big of a deal. Ok, I’m about to pass out at this point. Why didn’t you give us more warning? Why didn’t you break it to us slowly? Could you please go over all these big words you’re using? How can this be related to her heart or kidneys? ENT? I don’t even know what the inside of an ear looks like! SLOW DOWN. And of course, I couldn’t get any of those questions out. I was still too busy crying and feeling sorry for my little Ruby. The appointment was over and we almost walked away without the results or referrals. All they gave us was some outdated reading materials that basically showed the horrible stats of kids with unilateral hearing loss (having a hard time in school/failing at least one grade level and having behavior problems, etc.). In the end, they didn’t give us the results (I had to ask for them later) or audiogram, and I still felt so uninformed.
In retrospect, I think the audiologist had forgotten that this was our first time dealing with anything related to hearing loss while she deals with it everyday. However, that is no excuse for making us feel the way we did - sad, ignorant and defeated. Now, almost 2 months later, I still have negative feelings toward this first audiology experience. I’m not sure if it really would have been “better” at a different location or with a different audiology as it will always be hard telling a parent of his/her child’s hearing loss.
Prior to the appointment, we were not very worried. Everyone had led us to believe that we were most likely just fine and that there was just some sort of misreading in the hospital screening. Unfortunately, it was mistrusting and ignorant on our part for blindly believing everyone and not being more thorough or prepared. We have now “grieved” a bit and have googled and learned a lot more about hearing loss, hearing tests, and the ear. In the future, we will come more prepared with questions and know to ask for the results and audiogram. If we could do it all over again, we would have taken the hospital screening more seriously and been a bit more prepared for potential bad news at the audiologist; instead, we just felt so unbelievably blindsided with the news of Ruby’s hearing loss that we couldn’t fully take advantage of our time with the audiologist and get the information needed to try and give our daughter the best care that we can.
