We first heard the words cochlear implant the day that Evy had her ABR test done in the hospital. While she was waking up from anesthesia, the audiologist who had been reading the test asked if she could come in and talk to us about the results. After she gave us the news that Evy was profoundly deaf in both ears, Kyle and I blankly stared at her with tears in our eyes and said "Ok...What do we do now?!" We were shocked when she told us about all of our options. We immediately thought that Evy would learn sign language and possibly never speak, but then the audiologist told us about cochlear implants. She let us know that it would be a long process and that we had lots of steps to take before getting Evy an implant, but it left us with a lot of hope for Evy's future. All hearing impaired children have their hearing tested multiple times and are required to have a trial period with hearing aids before getting implants, to be absolutely sure that implants are the best choice. Four months ago I knew absolutely nothing about hearing loss and now I feel like a I could practically teach a class on it! We have certainly done our homework, and know we are ready!
At this point we are unsure of the cause of Evy's hearing loss. After surgery we will have to see a geneticist and Kyle, Evy and I will have to do blood work to be sure. Her doctor suspects it is a mutation in the Connexin gene. Connexin 26 is the most common cause of nonsyndromic hearing loss, and since Evy has had no other health issues since birth, this is likely the cause. We are told that it is reassuring if this is the cause because it will mean that there is no other syndrome or illness that has caused Evy's hearing loss. Basically, about 1 in 30 people carry this flawed recessive gene, and if both parents are a carrier, there is a 25% chance of having a hearing impaired child. For instance, our other daughter, Paityn could be a carrier of this gene and not be affected, or she could not be a carrier at all. Although it won't change anything, we will still find out the cause so we can rest assured that Evy is 100% healthy.
There are different degrees of hearing loss; minimal, moderate, severe and profound. At first we felt discouraged that Evy had the worst degree of loss, but then the audiologist explained that Evy's situation did have some positive aspects. She said if your child has a hearing loss, you either want it to be a minimal-moderate loss, or a profound loss. Children with minimal-moderate loss can have their hearing improved with hearing aids and children with a profound loss usually become candidates for a cochlear implant. She explained that children who are in the gray areas in between often have more difficulty because hearing aids don't provide them with enough benefit but they don't quite qualify for a cochlear implant. We found some relief in this and since we knew she would likely be an implant candidate, we quickly began our research to see whether or not the implant was something we wanted for Evy.
The first time we toured her school, The Moog Center, our hearts melted as we watched all of the children talk and play. A few times I found myself staring at the kids, looking for an implant or hearing aid because I couldn't believe they were hearing impaired! I was stunned by how amazing these children were, and my immediate hope was that Evy benefited and thrived just as much as these children had.
True, it's a very scary thing to think about your child having a major surgery, but after seeing the proof right in front of us, we knew this was the right choice for our precious girl! Below I have posted a picture of what the implant looks like.
The picture on the left shows what will actually be implanted and the picture on the right shows what the external piece will look like. They will start by making a small incision behind her ear, then he will drill a hole through and thread the tiny electrode through her cochlea. Next he will need to hollow out some bone from the skull in order to keep the internal piece from moving inside her head. During surgery they will hook her up to a machine to make sure they are getting a response and to see that the device is in correctly. Lastly, he will suture the incision. She will likely need to have some hair around the incision area shaved, but he says he will make it as minimal as possible. The external piece shown in the picture on the right will not be worn until 2 weeks post op, allowing time for swelling to go down and for her sutures to heal. The implanted device will have a magnet which holds the external piece in place. Evy will take off her external device when she sleeps, swims or bathes and when it is taken off, Evy will not be able to hear anything. We will not control the sound level on Evy's implant. Her audiologists will constantly be working with her and programming the implant so that it's perfect for Evy!
There are always certain instances where a child ends up needing their implant removed at some point for various reasons, but if all goes as planned (and I know it will!), then Evy will always have the same internal device. As the years go on and technology progresses, the implant company will make advances in the external processor which will communicate with what is already inside.
People often tell us that we're handling the situation well and that we keep a very positive attitude, but the truth is that I don't have a choice. I can't be any other way about it and stay sane! I definitely have days where I'm almost in tears while staring at my planner and seeing all the dates of therapy, ENT and audiology appointments I have written down and scratched out and rewritten. Our schedule is crazy and I constantly have a million things on my mind, but if I let every little thing get to me I would drive myself insane! When I sit back and look at the big picture I realize that I have so much to be thankful for. This whole situation has and will continue to cause some tough times for us, but it's nothing we can't handle! I know that the rewarding moments will surely outweigh the tough ones and when we look back, those will be the times that we remember!
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