Help Give Kolbi the Gift of Hearing

Our son Kolbi who was born November 05, 2010 was diagnosed with profound hearing loss. He has one older sister and one young sister with normal hearing. When he was born, the local hospital did not perform a hearing screening before he was discharged. A few months after he was born we had our suspicions about his hearing, because loud noises didn’t seem to bother him.

The moment when we knew that Kolbi could not hear, he was 1 year old. We were at the Veterans Day Parade when a fire truck was driving by. The fire truck turned on their siren. It was very loud. Everyone around us was covering their ears, including Kolbi’s only sister at the time. The siren didn't bother me (the mother) because I have a slight hearing loss myself. One ear was corrected, but the other ear is very weak, but I get by. When I turned around to cover Kolbi's ears, he was asleep. The loud siren didn’t startle or wake him. He was bundled up in his blanket in the stroller sound asleep; as if nothing was going on around him.

(If you have ever watched Mr. Holland's Opus, there is a parade scene and that is exactly what we went through.)

After many failed hearing tests and an auditory brainstem response (ABR). An ABR is a test to see how well sound moves from the hearing nerve to the brainstem. It is used to check for hearing loss. This test is typically done on infants and children who may not be able to do other types of hearing tests because of age or developmental level. Kolbi was diagnosed with profound hearing loss in both ears. The doctor that gave this diagnosis strongly believes he was born this way. This news was upsetting because hearing aids were not an option. And also, at this point, or before, we could have started the process of getting cochlear implants or learning American Sign Language (ASL). A Cochlear implant is a device that uses what few hearing cells a person (with profound hearing loss) has and uses a processor to communicate with that individual's brain.

After learning of this diagnosis it didn’t take long to find out he was a candidate for cochlear implants. So at age 3 he received his first bilateral cochlear implant and at age 4 he received his second cochlear implant. The doctor said if this had been caught at birth, Kolbi could have had the implants before he turned 1 year old. This put his hearing, speech and learning, two years behind a normal hearing child. Kolbi is now 11 years old.

Kolbi can hear only with the cochlear implants. This has greatly improved his speaking, and learning capabilities and interactions with other children and adults. Although he has improved immensely in his learning and speech through the years he is still delayed in his education and speech. Kolbi really enjoys hearing. He loves listening to music, playing video games and watching funny videos with goofy noises on his computer. Everytime he hears a new sound his eyes light up. There are some sounds that make him laugh hysterically and some that make him jump. No matter the case, it is always heartwarming to see his reactions to sounds and noises.

Kolbi attends the Oregon School for the Deaf (OSD) which is located in Salem, Oregon. While his family lives in another town two and a half hours away. He stays at OSD in a dorm during the school week and comes home on the weekends and holidays. It’s hard for us (the family) and Kolbi to be apart from each other. But the school has been great for him as he continues to grow.

We are now faced with a new dilemma. One of his processors (cochlear implant device) was broken at school in an accident while playing and the other is not working. Unfortunately the warranty has expired, and we found out recently that the current processor he has is going to be discontinued. His other processor has had numerous issues in which we have replaced parts for and have been unsuccessful at repairing.

Since his generation of equipment is being discontinued we are faced with the daunting task of purchasing 2 new processors (cochlear implant devices). We have been in contact with our insurance to upgrade Kolbi’s cochlear devices to the new generation of equipment. The response from the insurance company is that it is not medically necessary for the upgrade. Before Kolbi received his first implant we had been granted that it was medically necessary. This allowed for insurance to cover the surgery and cochlear equipment.

We are at a point where we do not understand why all of a sudden our insurance is denying this upgrade as a medical necessity. Especially since his current equipment is being discontinued. This will also put a halt to his progress of development of speech and hearing. Since he is already without his cochlear devices this discontinuation means we will no longer be able to repair or replace parts as well. Our insurance quoted our out of pocket expense will be between $12,000-$24,000 for the upgrade. This is a tremendous financial burden for our family of five. Even though we (the parents) work full time in healthcare.

Currently, Kolbi does not have any working devices. Without his hearing devices, his day to day communications with family and friends, that do not know ASL, are affected. He loves to video call his immediate family and other relatives. Which can be difficult since he can’t hear them and some of his relatives do not know any ASL. This results in a lot of questions for us (the parents) and those relatives just guessing what Kolbi is speaking or signing.

We are asking for help to give our son, Kolbi, the continued gift of hearing. This is something he has come to love and enjoy through the many hobbies and activities he loves to do. Right now Kolbi is very much missing hearing his surroundings from his games and music or hearing trains and big trucks; which he loves! Or hearing simple things his Mom and Dad tell him like, “I love you.”.

We would like to thank you for taking your invaluable time out of your day to this particular insight into our lives.