The Unexpected - An Adoption Tale

Like most first time parents, we had hopes of receiving "that perfect child". Our "perfect child" had been born at twenty-nine weeks and was left alone in a Russian orphanage. We met him first at ten months of age. They gave us a medical history on the little fellow, that consisted of a brain bleed, numerous infections and viruses, and he was again fighting pneumonia as we peered into his little eyes. I saw a "light" in this little boy that was reassuring, I knew he was meant to be ours. He had so much love and life to share. He was the perfect child for us.

At fourteen months of age, he was given a clean bill of health and we brought him home. He was so tiny. We had no reason to believe that his speech and language delay was anything other than adapting to new people, a new environment, and a new language. This was exactly what we were told to expect in our adoption classes. Fortunately, our pediatrician had his check-list that he required to be completed for all internationally adopted children. On that list was the Hearing Test. Our son was “uncooperative” for the first hearing test, said the audiologist. Then a month later "he didn’t understand the tasks” for the second hearing test, said a different audiologist. That was when we were referred for an ABR (Auditory Brain Response, measures electrical activity of the brain from the hearing nerve by attaching small electrodes to the head). Just as we were all waiting for him to fall asleep, a bell sounded and our son turned toward the bell. Ahhh. He heard it and everyone saw him hear it. This test was now just a technicality. It was just something for the file, right? When the testing was complete, we received the unexpected... “It appears he has a profound hearing loss,” they told me when the test was complete. But, he could hear – we saw him respond to the sound of the bell! The audiologist began speaking a foreign language of alphabet soup, talking about AN/AD, OAEs, ABRs, cochlear microphonics, audiograms, speech discrimination. It was a whirlwind. I didn't understand what all that meant. Our precious baby might have Auditory Neuropathy they said, but we wouldn’t know for sure until we got another opinion at a center more familiar with Auditory Neuropathy/Auditory Dyssynchrony (AN/AD).

The time between appointments seemed like an eternity, but was only two months. One day we were convinced he could hear, the next day we were sure he couldn’t. How in the world would we figure this out when we were still getting accustomed to just being parents. Finally, the time came for the appointment at the center that was more experienced with this particular disorder. The tests were conclusive; he had AN/AD. We were right and wrong, he could hear – but he couldn’t understand what he was hearing -- it wasn't coming in as clear information or sounds...just noise. They fitted him with his hearing aids at 19 months old, but we knew that some AN/AD kids can successfully use hearing aids and some get no benefit from them at all. There was no way to know how well he could hear. Even with all the high tech testing, nobody could tell me what to expect.

After six months, there was no marked improvement in our son’s language development. Even though he was detecting sound at levels that should allow for speech development, he wasn’t even babbling. So, we began using Cued Speech and started down the path to learning more about cochlear implants and considering that as the best option for him. After thirteen months of strict hearing aid use and intense therapy, he only showed minimal progress in understanding language through audition alone. Our son was approved to get the first of his two cochlear implants. We immediately stopped using Cued Speech when his processor was activated, as we were advised to do.

The progress he made with his first cochlear implant was amazing. He worked very hard and went from having expressive language that was “unable to test” to having over eighty words in less than a year of implant use! He continued to make progress, but it was evident to everyone around him that there were times that he still had trouble hearing and listening. Though his progress was good, we all felt that he could be doing even better. After watching and documenting his behavior on the “good” and “bad” hearing days of his unimplanted ear, we determined that the AN/AD in the unimplanted ear must have been interfering. We went forward with the plan to get the other ear implanted.

We had moved to a new city and found a wonderful and highly respected surgeon. We began the process of attaining funding for the second implant. After months of work, the funding came through. Two and a half years after his first implant, we went into surgery to get his second implant. We were so impressed with how well he did with his first cochlear implant we chose the same product with this second surgery. When the operation was complete however, we received, yet again, the unexpected. Instead of receiving the device chosen by us, he had mistakenly been implanted with a different device. Again we worried. Will the two devices work in sync? Would they interfere with one another? How would that sound to him? Not only do the devices have different processing speeds and completely different technology, but think of all the equipment to lug around on vacations. We were assured that having two different brands would not be an issue. “Some people actually choose to have two different brands,” we were told.

We have been amazed. His progress with both of his cochlear implants has been tremendous. He loves both of them. He doesn’t have a preference, except that he wants to wear both. He hears equally well from each, and he is just over six months post-op since becoming bilateral. We were advised by our audiologist to go “cold-turkey” the second time around and he quickly adapted to the new input. His progress was so good that he was able to begin using both processors together after only one month of being activated. There are definitely perks about each brand, but as everyone had told us, both brands are great. His implants allow him to hear, to speak, and to be understood. I can only imagine how much easier it would have been for him to reach this point if he had been implanted years earlier. His hearing was never noted as an issue when we adopted him, but when the judge asked us if we were prepared to handle issues that arise from children being so premature, we said "Yes", fully confident we could handle the unexpected. We didn't have a clue - but we are so thankful that we didn't.

Written by a mom to an internationally adopted child
Edited by the CI Circle News Staff

Related posts of interest: Which Cochlear Implant Brand Should I Choose For My Child?

It's Not a Sprint, It's a Marathon

Paving the Way...

Rachel was born in 1987, before universal newborn hearing screening and before the internet. Her deafness was diagnosed at age two months. We left the audiologist with a diagnosis of a severe-to-profound hearing loss, having no clue what that meant or where to turn to for information. We went through a year of trial and error trying to find hearing aids and a program that worked for Rachel, that would meet our goal for her of having her become a hearing, speaking, fully participating member of the hearing world. When she was 16 months old, we spent a week at the Helen Beebe Center immersion program, became believers in the Auditory-Verbal Approach, and switched to an Auditory-Verbal therapist in Massachusetts, where we lived at the time.

Unfortunately, between ages 10 and 18 months, Rachel lost all of her residual hearing. Thus, although we were enthusiastic about the Auditory-Verbal Approach, it was not going to be possible for Rachel without any hearing. We were fortunate that our therapist agreed to keep working with us, applying the techniques of A-V to a visual oral approach. Rachel ended up being a whiz at lipreading and quickly gained a receptive vocabulary of 100 words. However, because she had no hearing, she did not understand that we spoke with our voices, and so she only mouthed words.

When Rachel was 2 years 3 months old, our A-V therapist (AVT) was speaking with an AVT in Canada, who mentioned that she, too, had a student who was totally deaf, and the family had taken her to New York University for a cochlear implant. This was in August 1989. We called immediately, took Rachel to NYU for tests in October, and the NYU team scheduled her for CI surgery eight weeks later.

We took a leap of faith deciding to implant Rachel. The implant was not yet FDA approved in children but was, instead, in phase III FDA clinical trials for children ages two and older. There was not another child in all of New England with a CI, and so we had no one at home to speak to. When we were in NY, we met a four-year-old girl with a CI who was speaking beautifully, but she had lost her hearing to meningitis at age two, and so, unlike Rachel, her brain had had access to sound before she lost her hearing. We had no idea what to expect, and so few children had been implanted at that point that the NYU team couldn’t tell us any more than that she’d be able to hear environmental sounds.

Rachel received her CI on December 21, 1989. She spent four nights in the hospital, including the night before surgery. This was standard then. A month later, we returned to NY for three days for her initial stimulation. We were thrilled when she responded to sound during the mappings, but we had no understanding at all of what programming her CI involved.

When we were home again, I had so many questions but no one to talk to other than the NYU CI team, and fortunately for me, they were a very small group then, and they readily answered all of my phone calls.

I think back now on all of the questions I had in those early years. Why was Rachel’s head control poor? Did it mean that she had CP? What was the CI surgery like? Did I need to bring anything to the hospital with me? What was the audiologist looking for during the mapping? What was a mapping exactly? What parameters was the audiologist fiddling with? What was the significance of each of these settings? How tight should the magnet be? What response should I expect from Rachel once we got home?

I can only imagine how much more confident and at ease we would have been along the way had I had a resource available like the Cicircle. I would have had parents to go to for information and to calm my worries and fears. The Cicircle listserv itself has served as a tremendous resource for parents over the past 10+ years, but the addition of the affiliated websites makes it even more so. Who better to understand the questions and concerns that parents have than other parents? Who else can anxious parents turn to in the middle of the night and receive answers within an hour when their child has swelling at home after surgery or when the device seems to feel differently than before?

Parents of children born deaf today are so fortunate to live in the information age with information so readily available. To have it all in one place on http://www.cicircle.org/ is even better. Children have already received cochlear implants at younger ages because their parents learned about early implantation from other Cicircle parents. Similarly, it is Cicircle parents who were among the first to understand the benefits of bilateral implants and to pass the word on to other parents. By parents for parents, and, as a result, for better opportunities for our children - This is what the Cicircle has accomplished and what the websites will help accomplish even more.

As a postscript, I have to end this by telling about Rachel today, as well as about her younger sister Jessica, who was also born deaf. Despite having some professionals tell us early on that Rachel would never learn to speak well, she not only learned to speak English well, but she is also fluent in French, won her high school’s foreign language award as a junior, and achieved the highest possible level of “superior” in a statewide French competition for excellence in spoken French. She also won her school’s Faculty Cup award at graduation, an award agreed upon by the entire faculty for excellence in academics, citizenship and personal growth. She is currently a junior in college majoring in travel photojournalism, is an avid traveler who has been to France six times, as well as to Italy and Israel, and soon will be heading off to Australia and New Zealand, all on her own, navigating her way independently.
(Note: Rachel is speaking French in this video)
Jessica is eight years younger than Rachel. She had the advantage of being born to parents who had been there done that by the time she came along. We were living in Atlanta by the time she was born, but we traveled back to NYU in order to have her implanted at age 15 months, nine months younger than the FDA guidelines of age two at the time and 16 months younger than Rachel was when she received her CI. Both girls were then bilaterally implanted in 2004, something we quickly learned the advantage of thanks to other Cicircle parents.

Posted by Melissa