Interview with Mrs. JK

HH/Beck: Hi, Mrs. JK. Thank you for meeting with me today.

JK: Hi, Dr. Beck. Thanks for the invitation!

HH/Beck: Youre welcome. Id like to tell the readers that your son Ryan is now three and a half years old, and he is doing very well with his cochlear implant. However, Id like you to fill us in on how he got here!

JK: Sure, I can do that!

HH/Beck: Can you please start by telling us a little about your family and where you live?

JK: Sure. Ryan is our first child and we live in west central Illinois.

HH/Beck: Prior to Ryans birth, was there any history of hearing loss or deafness in either family?

JK: No, none at all. Ryans birth was normal, no problems at all. In fact, he was 8 pounds and 14 ounces at birth, so he was a big bouncing baby boy, born in 1998.

HH/Beck: Did the hospital where Ryan was born offer or perform Universal Newborn Hearing Screenings?

JK: No, they did not at that time.

HH/Beck: How was the hearing loss detected?

JK: It was really just our own observations. My husband and I noticed that at about age one month, he wasnt responding to sounds, like if the dog barked, or when I spoke to him. So we mentioned that to our pediatrician at the two month check-up, and she quickly ordered an audiology consultation. It was Christmas Eve of 1998; he was two and a half months old, and he was diagnosed with profound hearing loss.

HH/Beck: There are many things that I could comment on here, but the most important thing is to compliment you and your husband for your excellent observations! You may know that the average age of diagnosis in the USA still hovers at somewhere between ages 2 and 3 years, and, of course, all the literature indicates that early diagnosis and treatment is critically important to successful cochlear implantation. Another important issue is that your pediatrician immediately sent you to an audiologist for a diagnostic evaluation - and that, too, is a very important step. The pediatrician is to be congratulated for her swift referral, too.

JK: Yes, I think her actions were swift and appropriate, and from what we have since learned -- they were unusual. Many parents tell us their pediatricians kept telling them it was nothing, not to worry about it, and on and on, and, of course, the days and weeks of speech and language deprivation were ticking away. So yes, we think our pediatrician did us a great service and were grateful.

HH/Beck: So the bottom line is, your keen observation has really benefited Ryan, perhaps more than well ever know. Did you get a final diagnosis for Ryan, or was it cause undetermined ?

JK: The otologist ordered CT scans, and they showed enlarged vestibular aquaduct
syndrome.

HH/Beck: For the readers not familiar with it, this syndrome is one in which the bony structure of the inner ear doesnt form normally. The vestibular aquaduct of the inner ear system is enlarged, and this can cause hearing loss or deafness. It is a diagnosis the physicians make, based on radiographic studies, such as CT or MRI. The syndrome has probably existed since the beginning of time, but until we had fine resolution pictures of the inner ear, perhaps for the last 25 years or so, there was no way to verify or confirm the presence of this inner ear anomaly.

JK: Yes, lots of the material that weve read has said much the same thing. When we actually got the diagnosis, it was stunning. We sat there in disbelief for a little while in that little room, and we quickly decided that we had to move on, so we decided to do the very best we could with the cards we were dealt. At that time, we knew nothing about cochlear implants; all we knew about were hearing aids, and we knew that hearing aid technology was an option, but we needed to digest all of this before making too many decisions.

HH/Beck: How did the rest of the family react to the news that Ryan was deaf?

JK: The family was great. We had lots of support and lots of people trying to find out everything they could to help us from both sides of the family.

HH/Beck: Did you try hearing aids?

JK: Yes, we did. Ryan was fitted with a pair of excellent hearing aids when he was four and a half months old. The problems were minimal, but we did have to get new custom-made ear molds every now and then, I think every month or two, because he was growing quickly. But he did OK with the hearing aids and wore them faithfully for almost a year, right up until he got his implant. We really had no problem getting Ryan to wear the hearing aids. He was certainly more alert with the hearing aids than he was without them. He still seems to prefer to wear the one hearing aid in his non-implanted ear, along with his implant.

HH/Beck: So why did you decide to get a cochlear implant if he was doing OK with hearing aids?

JK: There were a few issues. First, we just happened to see a number of TV shows and documentaries on implants, and they were very interesting to us. Then we also had the opportunity to really discuss speech perception and language development with the audiologist, and we started to get concerned about high frequency amplification, and, of course, Ryans ability to produce clear and intelligible speech. So basically, the more we learned, the more clear the decision became. We wanted to give him all the sound and the most hearing we could, not just speech, but also birds, movies, TV and telephones, too.

HH/Beck: And so you started to investigate cochlear implants. Where did you go?

JK: We were working with the audiologists and the otologist at Carle Clinic in Champaign-Urbana, Illinois. We really had a great experience there and highly recommend the facility, the individuals, and the ECHO team, which stands for Expanding Children's Hearing Opportunities.

HH/Beck: I am familiar with Carle Clinic, and I know they do a great job with their cochlear implant program. If you dont mind, Id like to ask a question about insurance. Did your health insurance cover the implant, or did you have to pay for it yourself?

JK: Well, frankly, it was a bit of a struggle to get them to pay for it, but they wound up paying for most of it. We had decided that we were going to get Ryan the implant regardless, and if we had to pay for it, it wouldve been very, very difficult, but we would have done whatever was required to get the implant. A very important thing for the insurance companies to receive are the letters from the audiologists and the physicians explaining what the cochlear implant is, the fact that it has been FDA approved for almost 20 years, it is not experimental, and that it is not a hearing aid. All of those things really helped.

HH/Beck: Yes, and most often, the best thing to do is to work with the professionals to have their offices handle the reimbursement issue. I think many insurance companies say no right off the bat when the patients call, but when they speak to the doctors and the audiologists, its sometimes a little different situation, and it is probably the better route. Also, the professional offices do this all day long, and they are better equipped to communicate with the insurance offices. OK, so now were about one year after his diagnosis, and then what happened?

JK: In the beginning of December 1999, we found out he was approved, and so almost a year to the day after the diagnosis, on December 23^rd, he was implanted, and then about 4 weeks later he was hooked-up. So Ryan was about 15 months old when he first heard through the cochlear implant.

HH/Beck: What was the first thing he did when they turned on the implant?

JK: The first thing was that he looked up, and this great big smile came over his face! It was just amazing, and I know this sounds unbelievable, but later the same day, in the evening, he was turning his head when we called his name.

HH/Beck: Wow, that really is amazing. How many hours a day was he wearing it at first?

JK: He wore it pretty much all day from the very beginning. In fact, if it wasnt on, he asked for it, and it was obvious to us that he preferred to wear it, as opposed to not wearing it. So, its just been a tremendous success from the very first day.

HH/Beck: I have seen lots of children with cochlear implants, and Ryans success is really amazing. Most often, I think it takes weeks and months for the kids to really get used to the cochlear implant, and even though Ryan responded well right away, most children require more time, and the successes are not typically that clear - particularly on the very first day! Any thoughts on his education regarding elementary school?

JK: We really feel fortunate. Ryan has done so well, and at this time his speech is clear. He can speak to his grandma on the telephone, so were very pleased with the implant and his progress. As of now, he is basically done with his speech therapy. He did that until he was three years old, and as of now, were anticipating he will be fully mainstreamed right into the regular school. He can understand pretty much everything that people say to him, so we think hell do well in school, with a few minor adaptations.

HH/Beck: Thanks so much for the time and for sharing your story with us. Its a great story, and it really is very important for people to understand what cochlear implants can do and what some of the real success stories are. Any advice for moms and dads who are addressing these issues currently?

JK: Dont give up! Have a lot of faith, and keep trying. Also, remember that it is a process. There have been little goals (and big goals) along the way, but - it took two years of trying and moving slowly and cautiously to reach this point. Its not easy, its not always fun, but it is certainly worth it! The most important thing to remember is you have to do all that you can for your child, and it doesnt happen over night. It takes time and energy and commitment.

HH/Beck: Thanks so much. This has been very interesting and I thank you for your excellent efforts.

For more information on cochlear implants, CLICK HERE.