Background on Ben

Our baby Ben was born January 10, 2008 after a wonderful, uncomplicated pregnancy and delivery. He is our fifth child, and his older brother and sisters had fallen in love with him every bit as much as his dad and I had. Our family was so very happy. Ben failed his newborn hearing screening (OAE) the day after he was born, and then again the following day right before we checked out of the hospital. We were told not to worry as it was probably just fluid in his ears, and made an appointment to return to the hospital in one month for a follow-up test. At his one month checkup at the pediatrician, he again failed an OAE, but we assumed it was just inadequate testing conditions. The next day was his scheduled follow-up at the hospital and we were sure it would all be worked out at that appointment. I took him to the Audiology department of the hospital and he was given an OAE, which he failed. Then we were moved to another room for an automated ABR. I was told that this test was much more extensive and would take into account any fluid in the ears. Wires were attached to his head and little earphones were placed on his ears while he slept in my arms. He failed the test. Now I was getting worried! The technician told me that I needed to get Ben a full diagnostic ABR test (air, bone, and frequency specific ABR) also called a BAER test. They were backed up for the next 3-4 months. I was given the number for another hospital to try to get an appointment sooner, and we were able to get in with this other hospital the following week.

On February 22, when Ben was 6 weeks old, my husband and I took Ben for his diagnostic ABR. I still really felt that he could hear us, and that if he did have a hearing loss, it was probably just a mild one. The ABR was performed unsedated, so after nursing Ben to sleep, I held him in my arms for 2 1/2 hours, as he slept off and on with wires attached to his head. I could tell by the looks on the audiologist's face that something was wrong. A student came in to review the results as the test was going on. When it was over, I wanted to scream, "Just tell me what it is!" But I stayed calm on the outside, while inside I was freaking out. She went to talk to her supervisor and then got Ben's dad from the waiting room. Once they returned, she told us that the test had shown "at least a severe hearing loss in both ears". After reviewing Ben's test results, the ENT we saw the next day told us that he would classify Ben's hearing loss as profound. He had shown no response during the 2 1/2 hours of testing. Our baby was deaf.

Ben's dad and I were completely shocked and heartbroken. How would we communicate with him? What would his life be like? We assumed we would all learn sign language and Ben would attend special schools. I remember there was a pamphlet in the audiologist's testing room, that said, "When Hearing Aids Aren't Enough: The Cochlear Implant." I didn't take it because, thanks to my limited exposure to CIs in the media, I had a negative impression of the surgery, and hoped my son wouldn't need it. Over the next several days of research, I discovered that the cochlear implant could be the miracle device that had the potential to radically improve my deaf son's life. I stumbled upon a blog (www.turnonmyears.blogspot.com) of parents whose child, Drew, had the same diagnosis as Ben, and he was now learning to listen and speak because of the cochlear implant surgery. I felt like I was given a road map out of the pain and confusion. I emailed Drew's mom and she immediately responded by asking how she could help. She gave me invaluable advice that I will always be grateful for, and through Drew's blog, I linked to other wonderful blogs and web sites that gave me information. I saw that there was hope that we would be able to communicate with Ben by speaking and that he would have just as bright a future as our other children. Now we pray that Ben will be found to be a suitable candidate for the cochlear implant surgery. I have visited oral deaf schools and an auditory verbal therapy center. I have joined the CI Circle forum on yahoo. I have made contact with other parents of deaf and hard of hearing kids. We have visited two CI Centers to discuss the candidacy process and the surgery. Ben has begun county Early Intervention home visits with his Teacher of the Deaf. Each day I have tried to make an appointment or make a phone call or read a book or make an email contact that will help me bring Ben closer to hearing.

Many people have told us that we were lucky to receive Ben's diagnosis when he was so young. At the time, part of me wish I didn't know, because I felt like my happiness had been stolen so soon, and that there wasn't much we could do about any of it for a while. But I now realize how fortunate we were; how much we owe to the Universal Infant Screening program in our state, to the blogs of other parents who have been down this road before us, and to the professionals who have helped us along on this journey. Ben will finally get his hearing aids today, just a few days before he turns four months old. The CI process can now formally begin. Please pray with us that Ben will be able to receive and benefit from cochlear implants, and that we make the right decisions for our son as we go about this journey to hearing.