When I got home I immediately researched and read that fluid is uncommon after a few hours after birth; Elliot was more than 24 hours old when they had administered the test. We spent all week going back and forth between hope and concern. One person we were thinking about was my mother-in-law, Sharon, who had become deaf in her late teens. Why had we never thought about that? She had been told that it was caused by loud rock music at dances. Now, of course, Otolaryngologists laugh at that idea– when one has damage from loud sounds, especially music, it is usually a gradual loss over a lifetime, not a dramatic thing taking a year or two. Was it hereditary?
I remember that the ABR test took a long time and that we didn’t know what was going on until the first ear was completed. The audiologist said something like “yep, nothing.” Was it his experience with hearing loss that made him so flippant? Who knows. But when he did the 2nd ear, I was hoping against hope that it would come out OK. It did not, of course.
I remember sobbing through the parking lot as Kevin carried the car seat. I don’t remember much for a few days after that. Kevin had to call my parents to tell them… I couldn’t bear to hear their reaction. I do know that I was immediately researching the words which the audiologist had mentioned: cochlear implant.
On January 19th, when Elliot was 15 days old, I wrote to a friend:
” I am still working thru the grieving for all the things he won’t hear and difficulties he will have educationally, but I began getting a list of books together to read and have ordered them thru interlibrary loan. I will let you know as soon as we know the cause. Of course I am sort of hoping in the back of my mind that it is the kind that can perhaps be assisted by a cochlear implant, which they now do as early as 1 year. That would be a difficult decision but one we can’t really think too much about since we don’t know the type of hearing lossthat he has. We will know more after seeing an ENT.”
I learned a lot in the immediate few weeks. I read a wide variety of books about deafness– from the educational perspective, from the Deaf Culture perspective, etc. By 3 months, Elliot had hearing aids. That was an interesting struggle in itself. Not to get them– the audiologist referred to Yoshinago-Itano studies about early amplification and identification being crucial, which I found really interesting, but she refused to turn the aids up enough to benefit the potential residual hearing. My husband had to download the manual about that particular brand of HA and insist. She called the company before finally doing it. (What was she saving his hearing for– a rainy day?) I spent hours trying to keep hearing aids on a baby. Earmolds take a couple of weeks to get back from the company, so if they are sent to the audiologist and then you go pick them up, by then they are often outgrown. Who knew that ears grew so fast? There are many kinds of plastics and silicones that can be made into earmolds; some fit more tightly than others. Some are squishy, some are hard. We didn’t get a pair that fit well for months. When earmolds are loose, there is a feedback loop created by sound into the hearing aid, and they whistle. I remembered my grandfather’s hearing aids whistling in church; now my son’s were whistling all the time. Every time his head bumped his car seat or his high chair or my shoulder, or he touched them with his fingers, he whistled. Then, he figured out how to pull them out. Earmolds detatch quite easily, too, and so you have two built in choking hazards on your baby at all times. We tried several substances to maintain the seal– Otoease, Otoferm and even Lansinoh. Nothing was perfect.
Within a few weeks of the diagnosis I had found CI Circle, a listserv group for parents of children with cochlear implants. This, of all the sources, was the most useful for getting information, since we knew already that we were incredibly interested in cochlear implants. There were a variety of opinions, but I was able to narrow down which ones I agreed with and pick the brains of those parents. One very useful and exciting tip was from Melissa Chaikof regarding early implantation. She knew of a baby who was implanted under 12 months, which was (and still is) the FDA “recommended” age. We wondered if we could accomplish this for our baby, and we ate up research about the benefits. It seemed a “no brainer” that kids who are implanted younger learn language more easily and more naturally, like their hearing peers. Some of the kids who were implanted young had suffered from meningitis, which can ossify the cochlea quickly, and we did not have that reason to implant early.
On February 20th, when Elliot was 6 weeks old, I wrote to friends:
“Today Elliot had the second ABR (a hearing test which measures brainstem response by glueing/taping electrodes to the head while asleep), another tympanogram and Otoacoustic Emmision test (measures replies from the hairs in cochlea)…we had an appt. with the ENT a couple of weeks ago but didn’t learn much more then since it was an initial consult. The ABR was the same– no signs of any hearing up to 90 decibels, which is quite loud and the limit of the machine. Any residual hearing (which most profoundly deaf people have, even if just a little) will be over 90 dbls and will only be found out when he’s older and can show that he hears noise in other tests. We don’t know what caused the deafness, but in over 50% of congenital deafness cases, it is genetic. So we may end up having testing for that. We will also eventually have a CT scan in preparation for potentially getting a cochlear implant. We will be going to a CI center, either at U of M or Riley Children’s hospital eventually. They do them as early as 1 year now.”
We were so lucky to be in Indiana. Actually, for some reason, in the weeks after Elliot was born, the words a “charmed life” kept popping into my head by itself. I have no idea why, because that is a strange word… but it appeared to me that we were extremely lucky. We had a deaf baby, yes, but he was born in such an age of promise with the cochlear implant. I had two solid weeks of meals brought in by friends in La Leche League and the church. I had old friends write me long, encouraging letters. I felt that I was learning a lot about myself, what we could do when we needed to. I felt that I could be the mother that this child needed. So, when we visited Dr. Miyamoto at Indiana University and he was also gung-ho about early implantation, we knew that things were going to proceed.
One reason that we were clear about our course toward giving our child hearing was because of my husband’s experiences with his mom being deaf. There are people who argue that deafness is a god thing; for us, this did not ring true. Kevin remembered being the little boy who had to be all grown up in the days before email and phone services for the deaf. One time, he and his brother cowered in the back seat of a car while a police officer berated and roughly treated their mother, who had not heard his siren and not pulled over very quickly. Another time, he had to tell his mother that a friend of the family had been killed in a car accident moments before, when she had him call their house about something else. When he was in elementary school, he and his father arrived home to flashing lights of police cars because his mother had been raped while taking a nap on the couch. Then there were the little things– the water left running, the car door ripped off when she backed out the garage and didn’t notice that a door was open, the times he was locked out of the house while she was at home in her bedroom. In grocery stores, people would assume that she could hear because she spoke clearly, having heard throughout her childhood. Then when she would turn her back, they would assume she was being rude. She read lips well, but some people always speak quickly, and Kevin would have to interpret with his lips for every conversation like this. She had a lot of spunk, though, and had a zest for life. Unfortunately, Elliot never got to know Sherry because she died of ovarian cancer when he was five months old.
The other main reasons were because we wanted him to be able to communicate easily with his family, including his brothers, grandparents and extended family. We wanted him to be able to talk to anyone he might meet without an interpreter, if possible. We also hoped that he would be able to hear enjoyable sounds– birds, music, fireworks. Actually, music is one of the first things that I thought of, but after reading more about educational issues and deafness, I realized that it was the least of my worries.
On March 3rd, 2001, when Elliot was 2 months old, I wrote to friends:
“Our feeling tend to be that the we want Elliot to hear as much as possible and therefore be a part of our culture and our community rather than the d(D)eaf culture, which is shrinking due to advances in technology, health, etc. Although I know he probably will want to have deaf friends, he will be out there in a hearing world and we want him to be able to freely choose his occupation, spouse, etc. This doesn’t end up being the case often for those within the Deaf Culture. I respect their decisions but it is not what we want for Elliot. The Deaf Culture is often very opposed to CIs because they see it as taking people away from their community, destroying their culture. They have likened it to the holocaust. However, it is a one-day, go home the next, kind of surgery, and studies show that prelingually deaf children who have it develop speech similar to hearing children. In my opinion deafness is a disability (deaf culture denies this although they reap benefits of the Americans with Disabilities Act, etc.) much like the loss of a limb, eyesight…and we all know we would do what we could for our child in those cases. such as prosthetic limbs. ”
And on March 11, I mentioned CI circle to my friends:
You wouldn’t believe the support I have gotten on the CI email list and what I’ve learned. I am understanding so many things about him and finding that little things he does are common with deaf children. For example, he may have some vestibular issues and balance issues because he never lets me hold him upright on my shoulder, something I noticed right away before I even knew he was deaf. I have had many other parents comment that their kids were the same way, and that they have since had PT or OT to work with motor skills. There’s so much more than simply a loss of hearing. There’s heated debate about communication methods, heated debate about ways to stimulate sound, heated debate about medical vs. other models of looking at
kids…well, it’s overwhelming but I’m glad to be able to find out now. I’m one of the fortunate ones who has found out early. There are very few out there.
There have been about 200 children implanted with CIs between 9 and 18 months of age, so Elliot might be entering a very select group in a year. We hope that we can learn as much as we can and make a very informed decision. We will be going down to Riley in Indy in about a month and we hope to have a good mtg with the implant surgeons at that time.”