This is what I wrote:
Newborn Hearing Screening Testimonial
The Story of Thomas
Our expectations with welcoming Thomas into our family were no different than any other parents’ hopes. We simply wanted an uneventful birth experience and the reassurance that our child was healthy. While we knew that Thomas was going to be born via cesarean, we were calm because we experienced a c-section with our first child. We knew that it wouldn’t be easy, but it was something that we anticipated; and we were prepared to face. What we were not prepared for was a newborn hearing screening because this screening was not offered at the birth of our first child. So, the screening performed on Thomas was something new and unexpected. Moreover, we were not in the least way prepared for the results.
What I remember was a nice woman entering our hospital room and gently taking our child out of my arms and putting him in the bassinet. What looked like electrodes were put onto his head and the woman got behind a piece of testing equipment. Thomas was sleeping peacefully as the test was administered. The woman looked up at us after the first test was complete and said that she wanted to perform it once more. Following the second test, the woman looked up with somewhat of a confused expression. She said that Thomas had passed the test in his left ear, but referred in the right ear. She reassured us that it was not uncommon for c-section babies to refer because of residual fluid in the ear canal. She said that she would come back the next day and test again.
The next day arrived and this time two women walked into our room. Again, they took Thomas and performed the test, finding the same results. We were shocked, devastated and more than anything truly confused. How could our child not pass the test? After all, his AGPAR score was a 9 when he was born. We were handed a pamphlet and told that we should come back to the hospital in a couple of weeks for another round of testing. When we went back, the results didn’t changed. We realized that we had a child with a severe hearing loss in his right ear.
I remember receiving a call a few days later from the director of the program where Thomas was born. She was one of the two women that performed the second round of tests. She tried her best to comfort me, which was no easy task for her. I distinctly remember her saying to me at the end of the call, “You will not go through this alone. I will call you and remain in touch until the issue is resolved, I promise.” This was the last time that I talked to the director. We were alone with little information to help us navigate next steps.
It was not until we entered the Cook Children’s system did anyone explain the tests that were being performed, what the actual results were, and how an ABR and OAE both could help us rule out certain types of hearing loss. While we did have more information at our fingertips, we were still very much alone.
Without a doubt, going through the initial newborn hearing screening process and subsequent screenings was the darkest time that our family has ever faced. I know that neither the hospital nor the persons performing the newborn hearing screening could have helped us prepare for the unexpected. However, I have come to realize that there is so much more that could have been done for us and that so much more should be done for families facing this process today and in the future.
An easy to understand, yet comprehensive explanation of the screening process would be invaluable to families. Without an understanding of the process, parents are helpless to effectively advocate for their newborn child. Just as important to families is the support of other families that have walked down the path before them. Professionals are simply not equipped to help families cope with the pain and uncertainty of hearing loss. It takes the one-on-one personal contact to help families through the process.
More than two years later, I can tell you that Thomas is happy and most definitely healthy. Over the years, he last lost more hearing; and today uses a cochlear implant and a hearing aid. Every day we endure and manage the unexpected challenges that Thomas and our family face. However, we are able to do this because of information, knowledge and a strong group of families that are walking this path with us while firmly holding our hands.
Here is a picture of Thomas when he was first born. Gosh, this seems like so long ago, but the sting of a failed newborn hearing screening is still felt in our family today. We will always remember when...
*deep breath* and tears. I could've written most of this (minus the C-Section). I'm sure that same lady was the one who called me and same here, I never heard from her again either. I too had NO CLUE what they were doing, what test was being performed, nada, nilch, nothing, until I started asking questions and Bari had the answers. Still though, we felt so alone. Things need to change. I wish I was there with you cause girl, we'd tear it up in Texas. I know you will help so many families with this letter. You are AMAZING.
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