Millie’s hearing loss journey began in the hospital when she referred (failed) the newborn hearing screen. The news was a little surprising and yet, was something we knew was a possibility. Based on the genetic testing we did with Lainey, we learned that Tyler and I are carriers of the genetic mutation (Connexin 26) which caused Lainey’s hearing loss. We knew the chances of future children having the same gene mutation were 1 in 4, or 25%.
Millie was screened twice in the hospital and referred both times and in both ears. The hospital wanted to set up another hearing screen two weeks after our discharge, but in learning from our experience with Lainey, I did not want this to happen. (The tests performed in the hospital are screens, not tests themselves and would not actually tell us if there was hearing loss). Instead, I called Lainey’s Audiologist at Children’s to tell her the news. I asked if we could schedule an ABR (Auditory Brain Response) test. I knew this would be the test we needed to determine if Millie had hearing loss, and I wanted to cut right to the chase. She agreed this would be the best approach, and we were scheduled to see her on November 29, 2021, when Millie was just two weeks old.
The Natural Sleep ABR test looks to see how the hearing nerves and brain respond to sound. With this test, it is imperative that the chid remains asleep for the duration of the test, which lasts about 2 hours.
At Millie's appointment, the ABR showed normal hearing levels for Millie. That was great news! Her Audiologist also performed an OAE (Otoacoustic Emissions) test.
The OAE test is used to find out how well the inner ear, or cochlea, is working.
Millie’s results on the OAE were “abnormal”. Tyler and I weren’t as familiar with this test but followed the guidance of Millie’s Audiologist. She recommended we do further testing, based on the abnormal OAE. Follow-up testing was scheduled.
On January 10th, we returned to Children's for more testing. Millie’s Audiologist performed the ABR and OAE tests again. This time, the ABR indicated mild hearing loss. The OAE continued to read abnormal. Millie unforntately did not stay asleep the entirety of the test. Her ear pieces kept falling out and she wasn’t very happy (there was crying). Millie's Audiologist did not think the results were reliable based on how disruptive the test was. We would need to return for more testing.
It was hard to not get an answer in January! We didn’t care about the result - we just wanted an answer.
On February 1st, when Millie was 11 weeks old, we finally got our answer. We returned to Children’s for a third ABR and OAE. We followed Millie’s Audiologist’s recommendation and brought in Millie hungry and tired. I nursed her and then Tyler bounced with her on an exercise ball post-feed. Eventually she fell sleep (and remained asleep!) for the entirety of the tests.
Before testing began, her Audiologist said that Millie’s case (as with all newborn cases) are reviewed with a large team of audiologists. She mentioned based on all the testing/results already performed, she was expecting there to be hearing loss. That was really nice to hear going into the tests! Prior to Millie’s appointment, we didn’t know what to think! Her sharing this prepared us mentally for the results.
After testing, Millie’s Audiologist said the ABR was showing mild hearing loss in her left ear and mild hearing loss at one of the four tones in her right ear. She said Millie would get aided for her left ear only (the loss in her right ear is so mild that she would not benefit from a hearing aid). She said we would need to schedule an appointment with ENT and that she recommended genetic testing to help determine cause.
Our experiences are so different between receiving the news about the girls’ hearing loss diagnosis. I remember immediately breaking down in tears after learning of Lainey’s diagnosis. What did this all mean? What was life going to look like for Lainey? For us? Fear filled my emotions. There were so many unknowns. I instantly dove into learning more, educating myself about hearing loss, and the best ways I could advocate for her. It took some time to grieve the diagnosis. We had to grieve, process, and accept the news, and we did! We also trusted God’s plan above our own and knew we wouldn’t change a thing about our Lainey girl!
We took the news of Millie’s diagnosis so differently, almost confidently. For the most part, we know what to expect. We don’t have the fear of the unknown because we can look at her sister. I know the things I will need to focus on with her development, the situations that might bring her struggles, the best ways I can advocate for her. I know there will be new things I will learn along the way as well, but I am confident in my abilities to raise another daughter with hearing loss. We still need to process the news (a diagnosis like this is still a lot to process), but we know everything will be okay! More than okay, really! Millie Rose was created perfectly and just as she was meant to be. There is nothing I would change about her!
Next steps in Millie’s journey will be determining the type of hearing loss (sensorineural, conductive, or mixed) and rule out any syndromes that can be associated with hearing loss. We will be doing genetic testing to see if the gene mutation (Connexin 26) also caused Millie’s hearing loss. Millie’s Audiologist said that normally hearing loss is similar to that of the sibling’s. (Lainey has bilateral (both ears) sensorineural hearing loss. Sensorineural hearing loss is hearing loss caused by damage to the inner ear or the nerve from the ear to the brain. Sensorineural hearing loss is permanent.)
Later this month, we will be meeting with ENT to get the ball rolling on these unanswered questions. It makes me a little anxious as we wait to learn more but I know we will handle whatever comes our way.
Also later this month, we will be making a mold for Millie’s left ear. We will also pick out her device. (Not sure what color we will pick yet!). Millie will be aided later in life than Lainey but still very young. (Lainey was diagnosed at 6 weeks with one ABR and received her devices at 10 weeks old. Millie was diagnosed at 11 weeks old after 3 ABRs. I imagine her device will come sometime in March).
I can’t wait for more of Millie’s journey to unfold. I can’t wait to get Millie aided, to see her with her new ”ear”, to watch Lainey’s reaction and see her as a role model to Millie in so many new ways. I can’t wait to watch Millie dominant and crush any obstacles in her way.
I thank God the girls have each other. They were bound to have an amazing relationship and now, more than ever, they will have a very special bond that hearing individuals won’t ever understand. That makes me incredibly happy. Raising and watching these two little, beautiful girls, who just happen to have hearing loss, live and crush life will for sure be the highlight of my life.
Millie Rose, my angel, you are perfect! I am so blessed and thankful you are mine! Being your Mama makes me so incredibly happy and proud. I cannot wait to go on this journey with you! You are going to crush it, and I will be here with you every step of the way! I love you so much, Millie Rose!!
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