Our fourth child and third son, Seth, was diagnosed with a profound hearing loss when he was just two weeks old. A few months later, a diagnosis of Auditory Neuropathy got thrown in, just for kicks.
After a lot of soul searching and prayer, we decided to pursue cochlear implantation for Seth. A cochlear implant basically takes over for the hearing functions of the ear by way of an electrode array inserted in the cochlea, a computer chip that is embedded in the skull, and a magnet that connects the whole shebang to a processor on the outside. Somehow, and I'll spare you all the technical jargon, this means my son can hear.
Really well, in fact. Our son was implanted bilaterally at eight months of age, activated a month later, and he was caught up in language development to his hearing peers before his first birthday. Lots of work on listening and talking mean that now he is still hanging in there at an age appropriate level. In fact, he has no delays and he hears at a completely normal level.
Except for when the CIs come of, of course. Then, he is just as deaf as ever. It's a strange world to live in, straddling the line between hearing and deafness, and there is a very special place in my heart for families going through the same things we did. It's both the hardest and most rewarding thing I have done. It was terribly hard deciding to do what amounted to an elective surgery on our son, when I knew firsthand so many culturally Deaf people who have been extremely successful. But in the end, we are a hearing family, and I never wanted Seth to be left out of that. Seeing how he has blossomed and grown since his activation has been nothing but proof to me that we did the right thing for our family and for Seth. Of course, if Seth decides at some point in his life that he wants to go without the processors, that's fine, too. He's my son, and I love him whether he can hear or not.
There are many resources that have helped me along this journey, and I wanted to share them here. I also want to encourage anyone who is working through a diagnosis of their child or trying to decide of CIs are right for them to email me. I would love to learn about your family! The greatest thing about this whole ride has been the amazing people I have met and grown to love.
The John Tracy Clinic has an amazing distance learning program for families to teach their children with hearing loss. There are activities for everyone, from very young babies to older children. It's an awesome go to guide when you're tapped out of new ideas, too!
Our surgeon, Loren Bartels from Tampa Bay Hearing and Balance was an amazing support to us. He was never more than a phone call or email away, and he went to the mat for us to get Seth his implants early and all at once. Many kids are still implanted one eat at a time and after twelve months of age, and we were incredibly blessed to have an amazing Christian surgeon who understood our views was not afraid to fight for Seth's surgery date.
I love our Audiologist and Therapy Team more than life itself. I am thrilled to be a part of All Children's Hospital's Auditory Based Care program and consider everyone who has gone through this with us true friends.
I have to say that one of the relationships I have been most blessed by has been completely unexpected. When you're picking an implant brand, the people behind that brand don't really come into focus for you. It's all about technology and reliability and so on and so forth. When we picked Advanced Bionics as Seth's implant manufacturer, we knew he was going to be "married" to the technology for life and we were okay with that. What I didn't know was that I would fall in love with every person I met from the company and be blessed to actually become a part of their program mentoring cochlear implant candidates through their Hearing Journey website. Seth has also been able to test upcoming products for the company and we have been able to become close to many other AB recipients and their families, which has perhaps been the greatest part of all. Aside from him hearing, of course.
Some other great places to get information and support for cochlear implants and hearing loss are CI Circle and Let Them Hear.