The background on Lily's hearing loss...

There is a bit of background on Lily's hearing loss that we haven't mentioned yet and is an important piece to this story. Lily was born at The Birth Cottage on the bed in the Hydrangea Room on June 26, 2004 at 9:15pm. It was a normal birth, although much harder than Charlotte's birth (that is probably because Lily had a 15.75" head!). Because we were not at the hospital, Lily did not have a newborn hearing screening right away. Chris switched jobs not long after Lily was born and we were in insurance limbo for a few weeks.

We traveled to Tallahassee Memorial Hospital when Lily was 6 weeks old for her to finally have the newborn hearing screening. Her hearing was tested with the ABR test, or Auditory Brainstem Response. Her right ear was checked first and she quickly received a "pass" for this test (remember- this is the ear that has the profound loss!). She was deeply asleep for this ear. When it came time to switch to the left ear, Lily woke up a bit. Babies need to be asleep for this test to be accurate. We went ahead and tested the left ear even though she was not fully asleep. It took forever for this ear and the test administrator had to keep adjusting the wires that were attached to Lily's head because she was wiggling so much. After a long trial, the tester indicated that she didn't think we were going to get a good reading that day and she was going to have to refer us to Audiology Associates for further testing. I was glad to go, as I had a 2 year old Charlotte along with me and she was ready to go as well. The tester said she thought that Lily's abnormal results in her left ear were likely due to Lily's squirminess and that there was nothing to worry about.

The appointment was set for us with Audiology Associates for a date 6 weeks later. Since there was no emergency on their part to get us in as soon as possible, I still had little concern about Lily's hearing. I have not yet seen Lily's complete file so I am not positive about what tests were given to Lily that fall day in 2004. I can only guess at this point what tests she was given that day based on what I now know about audiology. I believe that the audiologist tested her ears first with the Otoacoustic Emission Test (OAE). She did not share the results with me and I didn't know anything about audiological testing then so I didn't know what to ask. Since Lily's left ear was the questionable one from the newborn screening, the audiologist started the ABR test on this ear. Once again, Lily was very difficult to test. She was squirmy and restless and her normal cranky self. Each time Lily squirmed, the test had to be reset and started over from the beginning. We were there for over 2 hours. Finally,the audiologist told me simply that the results were "inconclusive" and that it was hard to get a good reading due to Lily's restless behavior. She did not tell me that there was something wrong with Lily's ears (something that she could tell from the OAE), she just told me that further testing would be necessary in a few months when Lily was older and could be sedated for testing. That did not sit well with me- I did not like the idea of sedating my infant for a test that didn't seem necessary. I blew this test off. The audiologist missed her chance to tell me how important it was for us to find out definitively if Lily had hearing loss or not. Telling me that the results were "inconclusive" was just not enough information. Had she explained to me that sometimes babies are just born with unexplainable hearing loss and had given me the pamphlet I later saw this past June in the ENT's office about infant hearing loss and signs to look for, I might have taken all of this more seriously. Believe it or not, we are still seeing the very same audiologist.

In my mind, Lily was a colicky, very crabby, hard to soothe baby. That was why she didn't get normal test results. She didn't have a hearing problem. How could she have a hearing problem? We don't have any known risk factors. She was not a preemie -she was a 4 days late 9lb4oz baby. There was no birth trauma- she was pushed out in 25 minutes with no drugs. As a matter of fact, I did not take anything harder than an occasional Tylenol during my pregnancy with Lily. She has never had an ear infection, we have no known relatives with childhood-onset deafness, she never had any high fevers. The only thing close to a pregnancy complication was that Charlotte had Roseola when I was 25 weeks pregnant with Lily. Charlotte endured 105 degree fevers and febrile seizures with this illness. I came down with a cold or some virusy thing towards the end of Charlotte's bout with Roseola. But it seems unlikely that this would be the cause since babies are generally protected from most illness in utero.

I will admit that the questionable test results planted a seed of doubt in my mind about her hearing. At each well-baby check-up, I would ask our family doctor his opinion. He also agreed with us that it was not a great idea to sedate a tiny infant. He also agreed that since she had one ear that easily passed the newborn screening, even if there was something wrong with the other ear, she would get the sounds that she needed from her "good" ear and that we could do further audiological testing with her when she was older and no longer needed to be sedated for testing. He even did an old-fashioned tuning fork hearing test on her when she was about a year old because I brought the hearing worry up at her 1 year check up. She responded to the tuning fork being struck behind her back, but I now know that this is a common way for unknowing family doctors/pediatricians to check for hearing loss. Deaf kids are incredibly good at picking up on visual cues. She probably noticed my eyes following the doctor behind her or she watched to see what Charlotte was looking at or she noticed subtle movements that the doctor made.

So that pretty much explains the history of Lily's hearing loss. The doctors believe that her loss has been progressive, although we are not sure about that. Lily has from day one been a difficult baby. When she was a day old, I had this feeling that there was something off about her, although I never would have guessed hearing loss. There was something about the way her eyes darted all over the place instead of focusing in on me that seemed strange. She stared so intensly at lights when she was tiny and could not fall asleep if there was any light in the room, not even the lights from the clock on the VCR. One of the signs of infants with hearing loss is being unable to soothe your child by voice alone- there was no soothing Lily by speaking softly to her. It is hard to look back at pictures of Lily as an infant. There is a blank look on her face that I recognize now as the face Lily makes when she is not sure what is going on around her because she cannot hear. As Lily got older and more mobile, it seemed as though she had an invisible steel helmet on. She felt very distant to me and so unbelieveably stubborn. Now we know why.

-Kriste