Wednesday, September 1, 2010

Our story

Our story can pretty much be summarized by me telling you about the best and worst day of my life - all of which happened within a month of each other.

I felt instant and unconditional love the day my daughter, Sophia, was born. I had such an overpowering urge to protect her from everything the minute she was placed into my arms. My husband and I chose not to find out if we were having a boy or a girl and I was so incredibly happy to have a daughter. It was the biggest surprise I had ever experienced. I knew by glancing at her daddy that she already had him wrapped around her finger as well, just seconds old. This was the best day of my life.

Sophia failed her newborn hearing screening at the hospital, but we were told that this was fairly common and not to worry. We scheduled a follow-up test at 4 weeks old. After bringing her home, we became worried when she didn't startle to loud noises, such as our dog barking. We discussed our concerns with her pediatrician, who also told us not to worry and she thought it was because Sophia has such a mild and easy temperament. My husband (Jared) and I vowed not to worry until we had the follow-up test. We took Sophia in for the ABR (auditory brain stem response) on 4/26/10. During this test, an audiologist placed electrodes on Sophia's head and tiny earphones in her ears and played a series of sounds and tones. Her brain stem response to these sounds was measured.

The testing itself is very nerve wracking for a first-time mom because they want the baby to be asleep the entire time. Very hard to plan for a one month old!! It was seriously the longest two hours of my life! I remember the audiologist coming in the booth at one point to check the earphones and my husband asked her how Sophia was doing. She looked at us with pity and I could tell she was choosing her words carefully. "Well, she's sleeping very well. You guys are doing a great job." It was at that minute that I knew the results. I vaguely remember leaving the booth and going to the nearest bathroom in a daze. You know the feeling where it is like you are outside of your body, looking down on yourself? That is what I felt. I was watching myself, as if I were in a dream. Surreal. I remember thinking, "Is this really happening? Am I awake? What is going on? What are we going to do?" I forced myself to go back into the booth, but I could not meet my husband's tearful eyes because I knew he realized it too. We could not pretend that everything was okay any longer. This was the worst day of my life.

Our fears were confirmed and Sophia was diagnosed with severe to profound hearing loss in both ears. At first, we were both very angry and confused. I just didn't understand. There is no history of hearing loss and I had a very healthy pregnancy. I did everything right! I wouldn't even chew sugar-free gum while I was pregnant! Why is this happening to us? It's not fair! This lasted a day or so, and then I went into research mode. Within a week, Sophia was enrolled at the Moog Center for Deaf Education and we had scheduled an appointment for her to be fitted for hearing aids.

Today, my husband and I are in a much better place and we are thankful every day for this beautiful gift we have been blessed with. Sophia, or Sophie as we call her, is absolutely amazing and I would change nothing about her. She is our angel. Right now, we are going through the ups and downs of being new parents and balancing life. We have the added responsibilities of visits to the audiologist, ENT, therapy sessions, and the joys of caring for hearings aids, but we seem to be doing a pretty great job so far.


  1. What a neat way to allow people to follow Sophia's progress...great idea!!! I can't wait to hear all the good things to come for Sophia and, of course, for her mommy and daddy!!!

  2. I stumbled upon your blog today and was very moved. My story is very similar to yours except for the time line. My daughter was diagnosed at 10 months. She is 13 months now and has hearing aids. We are on the path to getting CIs. Thanks for sharing your story.