From the bottom of my heart- thank you to everyone who has wrapped their love around us and reached out with such kind words and messages! I am so glad I finally had a second to sit down and share our journey (so far). We have quite a long road ahead of us and we hope you follow along for the ride.
Charlotte (or Charly for short) was born August 2, 2017 via a beautiful VBAC delivery with zero complications. I was 37 weeks when she made her surprising debut and she was as pink and perfect as I could have ever imagined. At 24 hours of life, the nurses took Charly back for her hearing screen and informed me that she had failed both ears. They also reassured me that this is perfectly normal and is most likely just retained fluid from pregnancy and birth. They tested two more times before we were discharged and she failed those follow-up tests as well. Again, given that she was 37 weeks and small for gestational age (a whopping 5lbs 6 oz at birth), they assured me that it was most likely an issue with fluid. I left the hospital with zero concerns over Charly’s hearing. Afterall, she was perfectly healthy and we had zero reasons to indicate there would be an issue with her hearing outside of those screens.
Fast forward two weeks, and Charly had ANOTHER screen but this time with an audiologist. Again, she failed and was referred to the local childrens’ hospital, CHKD, for a diagnostic ABR test. At this point, I was a little concerned but still in complete denial these failed tests were a result of anything other than fluid.
At 1 month of life, Charlotte had her unsedated ABR test. I casually walked in and was ready for them to tell me what I thought I already knew, she had fluid blocked up. But as the test went on, something in the silence of the audiologist and the look on her face told me something wasn’t right. A wave of anxiety hit me as she stepped out of the room to grab another audiologist and I just knew. When she walked back in the room, I asked her if there were any results from the test up to that point. She took a breath and calmly told me that the test verified that Charly had bilateral profound hearing loss. My heart sank to my stomach and the tears flowed before I even knew what it meant. Profound hearing loss? That sounded fancy so I straight up asked the audiologist: “Is she deaf?”. When she replied yes, my heart broke. Nothing in my heart changed for this sweet little baby, of course, but I had NO idea what it meant to be deaf. I was just so sad she hadn’t heard my voice or me tell her I love her. She gave me information and resources and I headed home to process.
My husband did not attend the test with me because he had work and I truly thought the results would show fluid. I was completely unprepared for this diagnosis and I did not even know how to gather my thoughts to tell him. I called him as soon as I left the office and he made his way home early to process the information with me. I am not going to lie, when he came home we cried and cried. We just did not understand and were so heartbroken for the challenges we were sure we would face. Neither of us had ever met a deaf person in our life.
We immediately went to Dr. Google and began to research all we could about hearing loss, deaf culture, and sign language. Upon this search, we came across many videos and stories about cochlear implants. We were AMAZED. I had never even heard of CI’s before and to see these children develop beautiful language and attend mainstream school was so inspiring for us. For my husband and I, giving Charlotte the gift of hearing with cochlear implants was the path we knew we were going to decide on. This is a decision I had no idea would be so controversial (again- new to deaf culture here), but its also a decision that we know in our hearts is what we want for Charlotte and our family. While we respect everyones’ varying opinions on this topic, we are 100% at peace and excited for this decision.
The next steps were to meet with out ENT, schedule an MRI, and get Charly fitted for hearing aids. This is where our journey gets REALLY exciting. Before Charly got her Phonak hearing aids, our audiologists were very realistic with us about our expectations. Charly’s degree of hearing loss was so profound that there was a huge possibility she would not get much benefit from the hearing aids other than stimulating her auditory nerve to prepare for surgery. In fact, we were told she might even sleep through the entire hearing aid fitting. We showed up to the hearing aid fitting without any expectations- we were just eager to get this next step out of the way to continue our journey to Charlotte’s implants. I almost didn’t have my husband video because we weren’t expecting anything, but because I really wanted to document and tell our story I had him turn on the camera “just in case”. Boy were we surprised! As much of the WORLD knows by now, Charly DID give us a reaction- the most heartfelt, amazing reaction to hearing for the first time than I could ever imagine. Oh my goodness- to see her eyes look so deeply in mine as I told her “I love you” for the first time changed my life. People questioned her reaction (oh the joys of the internet- gosh can’t a family just have a happy moment without someone having something negative to say? ok i digress), but as her mother, I know the look in her eyes when she is hurt, or scared, or in discomfort, and in this moment, with our hearts connected, all I could feel through her was love and joy. It was an amazing moment to say the least, a miracle we truly were not expecting.
Since this moment, Charly has been thriving. She is a VERY vocal baby and loves her hearing aids. She gets a beaming smile every morning when we turn on those hearing aids and it is truly special to get to witness a miracle like this every day. Your baby hearing you is something many parents take for granted. I sure did before Charly. She is enrolled in early intervention and already meets once a month with a speech therapist (shout out to Courtney who we love- I have a feeling she is going to be like a family member by the time we get to preschool). We have enjoyed learning about deaf culture and I can honestly say I am so proud to be the parent of a deaf child. We are so thrilled that she is warming hearts all over the world. We are so excited for this journey and to watch her move mountains. In our eyes, she is no different than our other child and we will treat her no differently. We will push her, encourage her, and love her through all challenges to make sure she accomplishes everything she wants in life.
Advice for parents going through this:
Just love and enjoy your baby/child. Hearing loss has not taken away ANYTHING from my experience with my newborn- if anything it has just helped us connect on a deeper and different level. I honestly forget she’s deaf at times because I don’t allow it to change our life or relationship. I would also encourage parents to connect and reach out to other families like ours. I have found so much comfort in the words of mothers and fathers who have been there. Be honest, process the information you are given, and make the decisions that are best for YOUR family. Finally, STAY POSITIVE- your baby will feel that energy! I am always happy to chat and connect. I hope to make lifelong friends through this process.