Did your child pass the newborn screen?
No she did not, she failed the newborn screening and was tested at two days old first thing in the morning, we were told that it is normal for her to fail because she is so young, and my child was born with fluid in her lungs and ended up having to stay in NICU for a few days. We were told that because she was born with fluid in her lungs it was possible that there could be fluid in her ears. At the time of the test she was very restless, she was later tested again that same evening and failed again. We still did not think anything of it and were told to come back for a third screen when she was two weeks. We went back then and she failed again. At this time we still were not too concerned and we were referred to an audiologist to do an ABR. First off I would like to say that because we did not think anything of it, I went to the ABR by myself with my newborn. We were there for what felt like forever and at the end I was told that my daughter was profoundly deaf. At that appointment with the audiologist, she told me that my daughter was eligible for Cochlear implants if I wanted to go that route. Before that day I had never even heard of Cochlear implants or what they were capable of. I immediately called my husband after bawling my eyes out. He left work to meet me at home and we cried that entire night. We were devastated thinking of our baby girl’s future, and then we started researching more on cochlear implant‘s and became more educated on them.
What is your child’s hearing loss and cause if known and willing to share?
My daughter is profoundly deaf, and to this day we still do not know what caused her to be deaf. We did the connexin 26 gene test and it came back negative. We then determined it was not genetic and I had to come with terms that we may never know what caused her to be deaf.
What was your reaction to finding out your child had hearing loss?
My initial reaction was pure sadness. Before my daughter I have never really come into contact with a deaf person before. I went from being this happy new mom to this instant state of depression. I walked around feeling like I had a gloomy rain cloud on top of me all the time. I cried for probably about a month straight, and I was so scared for what her future would look like. I felt guilty I thought it was somehow my fault that I did something wrong during my pregnancy.
What amplification and hearing technology does your child use, if any? How/why did you decide this route?
Whenever she was three months old she received her first set of hearing aids. she had them until she was almost 8 months. At eight months she was implanted on her left side with her first CI. A few months after that she was then implanted on her right side. She is now 20 months and march 6th will be her one year “hearing birthday.” We decided Cochlear implants after seeing the success of early implantation and how much people can actually hear and speak through having cochlear implants. Because everyone in our family is hearing I wanted her to have that ability as well. I wanted her to be able to communicate with her friends and family in the same way we do as hearing people.
What language modality do you choose for your child and how did you make that decision?
My daughter is completely auditory verbal. We have not done any signing with her and we do not plan to in the future. She receives extensive speech therapy and is progressing very well through that, and we do not feel the need to sign because she hears and communicates so well through her implants alone. We made this decision after seeing how well she responded to the implants and realized that signing was not something that was necessary for her.
Best advice for other parents of kids with hearing loss?
Hang in there. It is tough and I wish I could say it gets easier with time, and in some ways it does. However, you will still have your bad and tough days sometimes, but you learn how to cope with them better. For me especially, I can say that as my daughter gets older and progresses, I’m starting to see that light at the end of the tunnel. Hold on to those little moments of progress, because they are going to make it worth your wild through this tough journey. Everything that you are doing now, it’s going to be worth it in the end. Just hang in there, because you will not regret anything that you are doing for your child now. You’re going to look back on those tough days and understand that they were worth every struggle you had to go through. Hold on to the love you have for your child, because it’s going to be what will get you through the day. And most importantly, take a deep breath, and tell yourself, YOU’VE GOT THIS.
Any additional resources that have impacted your journey?
More than anything I would just like to say that I feel that early implantation is going to be a huge part of a child’s success rate in Cochlear implants. Get them implanted as early as possible, and give them access to sound as soon as you can. My biggest resource in my journey would be one of my good friends who has two daughters that are deaf. I met her little girl who was three at the time and was implanted at eight months. I heard her talk so clearly and saw how well she could hear and understand me, and I broke down into tears and that was my biggest light at the end of the tunnel that I needed to see. After seeing her with her two girls I saw what Cochlear implants could do for my daughters future. I immediately told myself, “I want that, I want that for my daughter” I got her implanted as soon as I could. I also made sure that she wore her hearing aids to keep her nerve activated before getting implanted. After getting implanted I ensured that she was wearing her devices daily as much as possible, anytime her eyes were open, her ears were on. I worked with several speech therapist and I learned how to work with my child on her speech and language. I learned the Ling 6 and I worked with her diligently, and to this day I continue to work with her to ensure that her speech and language stays with her normal hearing peers. I think it’s safe to say that the work I’ve been doing with her is starting to pay off because, I am proud to say that with all of the speech therapy and all the work that I have done with her, she is 20 months, and at her last speech evaluation she was testing at two years one month. My daughter can also hear up to 15 dB, that is something that I never imagined would be possible, but here she is fighting the impossible. I honestly could not be more proud of her. She goes to speech therapy twice a week and I’m so thankful for all the speech pathologists and audiologists that worked with my daughter. I am also thankful for them because they me the tools and knowledge that I needed to be able to work with her so diligently at home. And it has been a whirlwind of emotions, and the emotions still hit me from time to time. But whenever I look at my little girl, I can see how far she’s come, and that makes me one of the proudest moms ever and I couldn’t ask for more.
Cochlear implant children are truly incredible, and they amazing me so much
