How Our Family's Hearing Loss Journey Began
Seth is our fourth child and third son. He was just two weeks old when we found out he had a profound hearing loss, and a few months later came a second diagnosis: Auditory Neuropathy. After a great deal of reflection and prayer, we decided to go ahead with cochlear implantation for Seth.
In essence, a cochlear implant takes over the ear's job of hearing: an electrode array goes into the cochlea, a computer chip is set into the skull, and a magnet connects it all to an external processor. Put simply, this technology lets my son hear — and hear remarkably well.
Seth was implanted in both ears at eight months old, activated a month later, and had caught up with his hearing peers in language development before turning one. With steady work on listening and spoken language, he keeps pace at an age-appropriate level. He has no delays and hears at a completely normal level — yet once the processors come off, he is just as deaf as before. Living between the hearing and Deaf worlds is an odd place to be, and I hold a special place in my heart for families traveling the same road. It has been both the hardest and the most rewarding thing I have ever done.
Deciding on what amounted to elective surgery for our son was terribly hard, especially because I knew many culturally Deaf people who have been extremely successful. In the end, we are a hearing family, and I never wanted Seth to be left out of it. Watching him blossom since activation has confirmed for me that we made the right choice for our family and for Seth. And if he ever decides he wants to go without his processors, that is fine too — he is my son, and I love him whether he hears or not.
Resources and People Who Helped Along the Way
Plenty of resources have carried me through this journey, and I want to share them here. I also want to encourage anyone facing a child's diagnosis, or weighing whether cochlear implants are right for them, to reach out by email — I would love to hear about your family. The best part of this whole experience has been the remarkable people I have met and grown to love.
- The John Tracy Clinic runs a wonderful distance-learning program that helps families teach children with hearing loss, with activities for everyone from tiny babies to older kids — and it is a great go-to guide when you run out of new ideas.
- Our surgeon, Loren Bartels of Tampa Bay Hearing and Balance, was an incredible support. He was never more than a phone call or email away and fought hard to get Seth his implants early and all at once. Many children are still implanted one ear at a time and after twelve months of age, so we felt truly blessed to have a skilled Christian surgeon who understood our views and was not afraid to advocate for Seth's surgery date.
- I love our audiologist and therapy team more than words can say. I am thrilled to be part of All Children's Hospital's Auditory Based Care program and count everyone who has walked this road with us as a true friend.
- One of my most unexpected blessings has been the people behind Advanced Bionics, Seth's implant manufacturer. When you choose a brand, the technology and reliability are what you focus on — but I had no idea I would come to love every person I met there and become part of their program mentoring cochlear implant candidates through the Hearing Journey website. Seth has also tested upcoming products, and we have grown close to many other AB recipients and their families, which may be the greatest gift of all — aside from him hearing, of course.
- For more information and support on cochlear implants and hearing loss, CI Circle and Let Them Hear are also excellent places to start.
Tampa Bay Hearing and Balance All Children's Hospital Auditory Based Care Advanced Bionics Hearing Journey CI Circle Let Them Hear Email Me
More From Profoundly Seth
Home Hearing Loss Stillbirth Contact Us A Little Backstory Exhaustion Hottest Accessory of the Season Profound Sounds Pictorial Activation Day A Date to Remember We're Home Personality Plus A Fancy Night Out Self Image Subscribe Twitter Kelly's Korner Park City, Utah Jack and Mandy Partner Gitzengirl Gitz n Jo: Our Story Baby Be Blessed A Shift in Season Baby Hall Dear Mia Scampoli Family Angry Birds Telepods Review Life in the Fast Lane Healthy Strides Kingdom Twindom Blogs by Mandy Hornbuckle Designs Comments LinkWithin Edit Post Photo Credit
If you are just starting out after a hearing loss diagnosis, know that the path looks different for every family. Whether you pursue cochlear implants or another approach, the listening and spoken language work, the therapy team, and the community around you all make a difference over time. Feel free to email with questions — hearing from other families has been one of the most meaningful parts of this journey.