Click here to view Cecilias Story.
HH/Beck: Good Afternoon Scott and Pam. It is an honor to speak with you!
Scott: Hi Dr. Beck. Its our pleasure.
HH/Beck: I want to thank you both so much for sharing Cecilias Story with all of us. I feel like I already know your whole family! Cecilia may well be among the most famous cochlear implant patients of all time and her story is highly inspirational and delightful.
Pam: Thank you. Were very happy with the results of the projects shes been involved with. If they help to clarify other families questions about the cochlear implant, then the effort has been worth it.
HH/Beck: I guess the first thing I should explain is that Cecilia is now 8 years old, and she appears to be doing exceptionally well.
Pam: Yes, thats correct. She is 8 and is happy and healthy and enjoys hearing!
HH/Beck: I should also make it clear that the hyperlink above has been provided by Advanced Bionics and that when the reader clicks on the hyperlink, they will see brief excerpts of Cecilias Story, and then if the readers would like the full length video, it too is available for free from Advanced Bionics.
Scott: Cecilia has an Advanced Bionics cochlear implant, and were very happy with it.
HH/Beck: Very good. Well, as weve noted the hyperlink and the video tell much of the story, but perhaps you can cover some of the most important issues over the next few minutes for us? Can we start with how old Cecilia was when she was first diagnosed as hearing impaired?
Pam: She was 15 months old. I had taken her to our pediatrician for a well-baby check-up. During the exam, the pediatrician asked me if Cecilia responded to sounds. He asked if she startled to loud noises and if she were saying any words yet. Of course, those were the same questions he had asked about our older girls when they were 15 months old, and so I thought nothing of his asking these questions. However, at the end of the examination, the pediatrician suggested that Cecilia have a hearing test. That did take me by surprise. My first reaction was to think the pediatrician was being overly cautious and there really was nothing that we needed to be concerned about.
Scott: I should add that the pediatrician is a colleague of mine. I am a radiologist, and I consult with him on a daily basis. Later, on the day of Cecilias doctor visit, I happened to see him and he mentioned his concern about Cecilia to me. I remember saying to him I thought the hearing test was overkill. He said, Thats fine, its up to you. But then he also said, I didnt like some of the responses your wife gave me this morning, and so I thought testing Cecilias hearing would be the best thing to do. I made the mistake of mentioning all of this to my mom and Pams mom, and of course they decided to do home testing. They were slamming pots, pans, books, you name it they slammed it! And after all of that they decided that Cecilia needed additional testing. So I gave in.
HH/Beck: So there was nothing in her birth history that put her at risk for hearing loss, no familial hearing loss or significant hearing loss in the family? So as far as you knew, up to that point, she was perfectly normal with respect to her physical well being.
Pam: Yes, thats right. We never suspected any problem with her hearing. Her birth was normal in every respect and everything seemed to be in order, but back then hearing was not routinely checked at birth. Anyway, we did take her for a hearing test. The goal at that time was a regular, behavioral sort of listening test in addition to a tympanogram. The test results showed she had a hearing loss in both ears but didnt effectively diagnose the degree of loss.
Scott: We wound up taking her to another audiologist, who did an Auditory Brainstem Response (ABR) that showed a severe to profound hearing loss in both ears. We also went to an ENT surgeon and he told us that Cecilias ears were physically normal. The loss was sensorineural in origin. So in essence, the pediatricians suspicion based on Pams responses in the office was absolutely correct.
HH/Beck: Had Cecilia started to talk by the time of the pediatricians office visit?
Pam: No she hadnt. But my girlfriends baby was born eight days before Cecilia was, and he wasnt talking yet either. I just assumed that Cecilia would start talking a little later than her sisters had.
HH/Beck: I dont recall the exact normative data but I think the average age for children to produce their first word is about 12 to 15 months or so and then if you add in plus/minus one standard deviation it can be as late as 20 to 24 months. What was the time period between the pediatricians suspicion and the actual diagnosis?
Scott: About three months. Of course we often wondered how long it would have taken for us to notice the hearing loss if the pediatrician hadnt mentioned it to us. I suspect we would have noticed sometime before the next well-baby visit, but then again, who knows?
HH/Beck: Did you start Cecilia with hearing aids?
Scott: Yes we did. She started wearing binaural behind-the-ear hearing aids and they helped quite a lot. Her aided audiogram was dramatically improved over the audiogram with unaided hearing. We were using our form of total communication (TC) at that time and started to take sign language classes. We joined a parent support group too, which was very helpful to us. Eventually we had the opportunity to hear Dan Ling speak about the Auditory-Verbal method of teaching deaf children to use their residual hearing. We were interested in learning more, so we enrolled in an intensive residential training program at the Helen Beebe Center in Easton, PA. During the training program, I brought up the issue of cochlear implants and I really only brought it up to have the door finally closed on that option in my mind. I was under the impression that because Cecilia had usable residual hearing and because she was doing so well with the hearing aids that she clearly was not a cochlear implant candidate. Well, when I mentioned it to the audiologist, she said, Actually, I think Cecilia should be evaluated for a cochlear implant.
HH/Beck: So that mustve come out of left field for you!
Pam: It really did. We hadnt seriously considered cochlear implants before that point and we had everything to learn. It was May of 1997 and about two years after Cecilias diagnosis. We were signing and speaking at home and we were doing okay. Cecilia was also using an FM system full-time. We thought that because Cecilia was doing so well, the audiologist would surely tell us that Cecilia wasnt a candidate. So, you see, learning that an implant might give her more access to sound did require a complete reorganization of our thinking.
HH/Beck: And so you signed her up for the implant evaluation?
Pam: Yes. We really wanted Cecilia to have the best appropriate technology and it started to look like the cochlear implant would be the best alternative. After we started to learn more about children with implants and as we saw how the kids who had received implants were doing we made the decision for Cecilia to have the surgery. It was a matter of about 2 months from the time we had the implant evaluation until the time she had her surgery.
HH/Beck: And when was she implanted?
Scott: It was in July of 1997. Cecilia was about 3 and a half years old. She was operated on first thing in the morning and left the hospital early that afternoon with a big bandage wrapped around her head. That night we went to Little Italy in Baltimore for dinner. We had ice cream and watched some of the residents play bocci ball. It seemed strange to think that Cecilia had just had such complex surgery earlier that same day. The next day we were headed home and Cecilia and her sister were sitting in the back seat of our van. At one point during the trip, Cecilia reached up and very calmly pulled the bandage off the top of her head and handed it to her older sister, who panicked and started to cry, so of course, Cecilia cried too. Once the girls saw the spot where Cecilias hair had been shaved for surgery they knew why the bandage was on in the first place!
HH/Beck: Wow. Thats a great story the poor girls mustve really been surprised!
What can you recall about her first experiences with the cochlear implant?
Pam: The first thing that was really striking to me was the fact that after she had the implant and before she was comfortable with it, she really wasnt responding to sound at all. We had been told to prepare ourselves for this and that the first few weeks would be tough and they were. But still, I was very eager to see some evidence that this new technology was going to work, so after I put Cecilia to bed at night I would clap my hands behind her back before she took off the implant and went to sleep. Well, one night a couple of weeks after surgery, I clapped, and she turned and looked at me with a twinkle in her eye as if to say that something special just happened! At that moment she realized there were sounds that she hadnt been noticing, and every day or two there was a new sound that she noticed. I remember sitting in the backyard a few days later and she stopped playing and told me to listen. There was a dog barking in the background. It was very exciting for her and for us too. One other thing that I recall is a beautiful summer day, with not a cloud in the sky. As night fell, Cecilia signed to me that she heard rain. Well, it wasnt raining at all and I told her no. Then she signed rain again. I stopped to listen carefully and realized that she was hearing the sounds of the crickets for the first time! That was a very special discovery.
HH/Beck: I could listen to these stories all day. What a wonderful success Cecilia is, and how fortunate she is to have the two of you to help her. I am so glad that I got to spend a little time with you both.
Scott: Thanks Doug. It really has been a fantastic voyage. Were still learning new things and experiencing the joy that has accompanied us since Cecilia received her cochlear implant.
HH/Beck: I want to thank you for sharing your time and story and a little of Cecilias story with us. Id also like to encourage the readers to view the trailer of Cecilias story and to get a free copy of the full-length video too. It really is a delight to watch it, and I think it is very educational for professionals, implant candidates and patients too.
To view the trailer of Cecilias Story, click here.
Click here to view Cecilias Story.