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.
Santana
December 7, 2017 at 12:11 am (6 years ago)What an amazing story. I love following your Journey as my daughter and I are on the same journey. Sounds like pretty similar journey so far but she has unilateral hearing loss and it’s moderate to severe. It’s amazing how early it can be detected now and how unnoticeable hearing aids are now. My little one was born June 23rd and we found your video of Charlotte getting aided a week before our Kyla was aided. It made me cry it was beautiful.
Sarah
December 7, 2017 at 1:06 am (6 years ago)As a teacher of the Deaf/Hard of Hearing I stumbled upon your Instagram account without even knowing you were the Mom of the sweet little doll who became “internet famous” after her hearing aid fitting! I’ve since been oh so in love with your little family and watching your journey and I have truly enjoyed watching Charlotte turn on her hearing aids each day when you share in your “stories”! I actually work primarily with students who have hearing aids and/or cochlear implants and focus on listening and spoken language so I LOVED reading your story on the blog! You’re an inspiration to many and it makes me so proud to know there are parents out there like you and your husband! It can be devastating at first to learn the news of hearing loss but I am so excited and get tears of joy in my eyes reading about your enthusiasm and positivity about your sweet little girl’s future!!!! Trust me when I say I’ve seen hundreds of successful boys and girls who have hearing loss (honestly doesn’t matter if they’re hard of hearing of capital D Deaf) and have perfect speech and learn to listen and talk!!! Early intervention is key so you guys are doing all the right things!!!! Sending love!! Also—not sure if you’ve read the Welcome to Holland story but google it as I think it’s a great way to view this new world you’ve entered! DM me on instagram if I can help in any way as you navigate all of the hearing loss related new beginnings! (treatsandpushups on instagram)
Mary
December 7, 2017 at 2:24 am (6 years ago)Aw that is a beautiful and strong little girl! What an inspiration! Thank you for sharing your journey with us. With her implants, will she need sign language? (Coming from someone who doesn’t know) Hopefully, this question makes sense.
Jean
December 7, 2017 at 2:44 am (6 years ago)I cried not for her being deaf but how you handled this. I watched as they turned in the hearing aids and just to see her face light up and her sounds she’s making now show just how lucky she is to have you and her to have you to show the world life is still out there.❤️❤️
Audrey Huggins
December 7, 2017 at 3:05 am (6 years ago)The honesty and love in this post touches me in so much. May you and your family continue to move forward with Charly’s Journey with love and Godspeed….thank you<3
Lori
December 8, 2017 at 5:05 pm (6 years ago)I don’t remember how I found your instagram page, but WOW, love it, love the pics, you have a beautiful family. You should be so proud of all that you have done with and for Charly, she is blessed to have her family. Don’t listen to the negativity that you mentioned, that is from people who have nothing better to do. Keep pushing Charly and she will turn out just a wonderful as all the love around her. I wish you all the patience and luck in the world, you truly are a incredible person. Have a wonderful holiday!
Marianne Etringer
December 12, 2017 at 7:14 pm (6 years ago)I am so glad to find and follow you and your birds!🌸
Jami
December 17, 2017 at 5:58 pm (6 years ago)I just want to say what a beautiful blessing Charly is to me & anyone worth anything. I felt so bad last night and ran across your video. I knew that angel understood what her mommy was saying – even if for the first time. Cannot explain the joy it brought me. Praying for each of you – that God continues to bless your lives.
Jenny Miller
December 18, 2017 at 8:09 pm (6 years ago)I would love to chat if you ever have questions. I have 3 children two who are deaf and are bilaterally implanted with Cochlear Implants. I read your post and it immediately took me back to those first days of finding out even during the second time around. Thank you for sharing your story:)
Terrie Gandy
December 19, 2017 at 5:57 am (6 years ago)I am so thrilled with y’all when I watch your precious baby hearing your voice for the very first time!! What a miracle moment! ❤️😍 God bless ya’ll on this amazing journey.
Jennifer Cahill
December 28, 2017 at 2:17 am (6 years ago)I love signing and seeing deaf people hear for the first time. To see her eyes light up daily at the sound of her momma saying good morning, I love you. Reminds me how blessed I am and so are my babies.
Angela Reynolds
January 11, 2018 at 4:53 pm (6 years ago)Thank you for sharing your story every time this video pops up on my Facebook I watched it I cry each time. I so wish I lived near y’all so I could do sign language with yall . I would love to keep hearing updates
Julie
January 13, 2018 at 9:48 pm (6 years ago)Awesome story! Charley is so sweet!
Alesa Hefner
January 15, 2018 at 2:56 am (6 years ago)Hi Christy!!
A friend of mine shared your Instagram page with me after a video of Charlotte popped up on my news feed on Facebook! My son Tyson, is 9 weeks old and we go into Valley Children’s hospital here in CA this coming Friday to meet with an audiologist as well. Tyson was/is in the exact same situation as Charlotte. Born 39 Weeks, completely healthy. Failed hearing tests in the hospital and out. It’s taken us SO long to get an appointment thanks to good ol’ insurance taking forever. I wanted to thank you for sharing your story! I actually took 3 years of sign language back in high school and college but even with that knowledge, I’ve struggled with the overwhelming “mom guilt” of how to “fix” it. We still are not 100% sure of what the issue is for him (we have been given the same “fluid” information that you were given as well. I appreciate you taking the time to share your sweet daughters story. She is beautiful and I’m so excited for your guys’ journey ahead!
With love,
Alesa Hefner
@AlesaHefner
Cara
January 15, 2018 at 5:22 am (6 years ago)Wow, I feel so lucky I’ve stumbled across your little space on the internet. Our beautiful miracle daughter was born on October 6th, 2017. Our stories feel almost parallel. She failed her screenings in the hospital and I was in total denial that anything major would be out of the ordinary. Fast forward time to when she was a month old, sitting in the dark room with little electrodes all over her head for the ABR test where I heard the words, “Your daughter has a hearing loss”.
We just got her hearing aids a few weeks ago for her bilateral sensorineural moderate hearing loss, and goodness she could not be cuter or more excited to hear.
I’m looking forward to seeing your journey unfold!
Pernilla McElhannon
January 22, 2018 at 3:08 am (6 years ago)I love the way you share your journey with Charly! Our daughter has faced other struggles (she has a rare heart condition and needed open heart surgery at 9 months) but we know the pain & sadness when you find out your child is different. I would have gone the same route as you chose. How wonderful for Charly that she can hear your voice now! Lots of love! 💕
TAMMY GRIGGS
January 27, 2018 at 2:38 am (6 years ago)YOUR VIDEO BROUGHT TEARS TO MY EYES AND AT FIRST I DIDN’T EVEN REALIZE IT WASN’T JUST AN ADORABLE VIDEO BUT THEN I WAS WANTING TO SEE MORE OF HER, WOW IT THREW ME BACK A FEW STEPS,LITERALLY THE MOST HEARTFELT THING I EVER SAW….WHEN I REALIZED WHAT IT WAS REALLY ABOUT… I SO CRIED LIKE A BABY AT THE BEAUTY OF THE LOVE! UR A WONDER PERSON AND MOM.. GOD BLESS UR SWEET LIL FAMILY!