Oticon Alta

Taylor's Story

Taylor's story begins on July 30, 1996. That is the day we held him in our arms for the first time. It is also was his birthday. We, however, did not give him life, life gave us the gift of him.

We were privileged to hold the baby boy we would be adopting only minutes after he was born. As we held him, we were almost speechless; we could only hold him and cry tears of joy. As we told him how very precious he was we began to fall in love with him. He was our miracle, an answered prayer right in our arms.

We were told to return the next day and take him home with us. It all seemed so simple. But our well-laid plans were interrupted by an early morning phone call. We received word that in the night he had been transferred to the NICU unit at a local hospital.

We arrived to find our little boy in the Neonatal Unit with an IV in the top of his head. We were told that some routine blood tests had come back abnormal; his white blood cell count was dangerously low and they were running more tests to determine the cause. They also began a test titled ''TORCH,'' each letter of the word representing an infection that could be passed from mother to child.

After ruling several things out and Taylor being examined by many doctors, we thought the problem would be corrected simply by a blood transfusion. But after the fifth day a nurse suddenly swept us into an isolation room. She said one of the tests had come back positive and we needed to be in isolation and wear gowns and gloves any time we entered his room.

We soon learned Taylor had congenital cytomegalovirus or CMV. (This represented the ''C'' in the TORCH test.) It is a virus that is only harmful to a baby if it is contracted in the womb. It is such a common virus that some 95% of the population are CMV positive. It is very rare for a baby in the womb to contract it because usually by the time you are of childbearing age, you have already had it and have produced antibodies for it. But if it is contracted in the womb it attacks the nervous system.

Immediately we had questions; what would this mean for Taylor, is there a cure, will he live? These questionss would not soon be answered. The virus attacks the nervous system, any damage done inside the womb was permanent and irreversible. Further damage could happen, as long as the virus was still in his system and it was known to be progressive. Taylor would shed the virus in his urine and could do so for three to seven years.

Taylor was put on a strong medicine, which he received twice a day intravenously. Gancyclovir was known to stop the virus in some children. The doctors didn't exactly know how gancyclovir stopped the virus. They were never sure which children it worked in and which children it did not work in, until the child had grown through the developing years.

Taylor did receive an electrophysiologic hearing test (ABR- auditory brainstem response) before leaving the hospital. It was abnormal. While some of these tests can have false positives and false negatives at such an early age, the doctors felt under these conditions, it was an accurate test.

And so begins our journey into deafness . . .

Taylor had several doctors appointments his first year of life. A careful eye was kept on him so any deficiencies could be caught quickly. We didn't seek medical services for his ears until he was almost a year old. As we look back on it now, it probably took us that long to cope with the fact that our precious little boy, whom we had waited so long for, was deaf. We were not in denial, but test after test was inconsistent, and so there was always hope that it wouldn't be ''bad''.

We knew we needed to do something. Taylor was fitted for hearing aids and we began sign language classes. We loved him so very much and wanted to be able to communicate with him no matter what.

We believed his hearing loss was progressive. When he received his hearing aids, he did respond some times and it seemed his audiograms were a little bit better. After a year or so with the hearing aids, his audiologist suggested we go to stronger hearing aids.

During that year, we adapted at home. To get his attention, we would stomp on the floor or flash the lights on and off. We were learning sign language, and of course, concentrated on the words we needed most; ''drink,'' ''more,'' ''mommy,'' ''daddy,'' ''go,'' ''sit,'' ''walk,'' etc. Taylor was very visual and caught on to these many concepts by watching us. He explored many things through sign and we found him to be very mechanically minded.

He was always a happy child. As he grew, we saw that when other kids would try to play with him by talking, and since Taylor couldn't hear them, they got frustrated, and they gave up. He began playing alone more and more. As you can imagine, this was a heartbreaking thing to watch.

We had started reading books about deafness and options for deaf people. We heard about cochlear implants, but were relieved we would never have to ''make that decision for our child.'' Afterall, our child wasn't a candidate, or so we thought.

Many people said it was very risky, no guarantee it would work and lots of training afterwards. No doctors had ever mentioned it to us, so surely it wouldn't be for us.

As Taylor continued to grow, his hearing seemed to dwindle away to nothing. We thought about his future. Here was a deaf child in a hearing family. No one in either family was deaf, and we didn't know anyone who was deaf. What would his future hold? How happy would he be? How safe would he be? How would relationships outside our home be if he couldn't communicate with other people and most could not communicate with him?

It was at about that time the audiologist mentioned that Taylor could be a candidate for a cochlear implant.

We were scared! Thinking about putting this small child through surgery frightened us. We tried not to think about it. We had to research the cochlear implant and what it meant for our family.

We met other families with hearing impaired children and had been in touch with several professionals through therapies, sign language classes, and early intervention resources. I began asking everyone what his or her opinion was regarding cochlear implants. I took both positive and negative responses. We received many positive responses, and only two negative responses, so I continued to research. I was given names of families I could call and speak to about their experience. That was very helpful. I eagerly called these families to see what they could tell us. All of these families had children with severe to profound hearing loss and families with hearing parents and/or siblings.

We knew there was controversy concerning cochlear implants. Without exception, each family told us the benefits of cochlear implantation far outweighed any controversy they had encountered.

After hearing their stories, we decided to go ahead with the cochlear implant. We came to the conclusion that we really had nothing to lose. If we had the implant and Taylor lost total hearing in one ear, because there was so little there anyway, what would it hurt? We had originally thought we would wait until Taylor was old enough to make the decision for himself. We learned that to be most effective, it needed to be done at an early age. Importantly, the decision to use the cochlear implant, or not to use it could still be his. We decided we would rather him say to us, ''I choose not to use it,'' rather than, ''Here was this opportunity, now lost, why didn't you give it to me?'' We were very happy with our decision. We chose what was best for our family.

Taylor was implanted in December of 1999. We were scared. All surgery has risk, but we knew he was in good hands. We had prayed about, and for, this decision and knew God would be with Taylor. We were also confident that he was with a very competent doctor.

We were unsure, however, how to prepare Taylor for the surgery. How do you explain to a deaf three-year-old what is about to happen to him. We took a stuffed dog with him into the hospital and the staff was very helpful. They did everything first to the dog to show Taylor what they needed to do with him. When we saw Taylor in recovery, they had even put the same bandage on the dog's ear that Taylor had. Even though the surgery was a few hours long, it was probably harder on us than it was on Taylor. He was in some pain for a few hours, but by the next morning he was simply on Tylenol. The following day, he didn't even require that.

It healed quickly. Taylor was very curious about the stitches. He would put his hand up to the scar several times and you could see his little mind trying to figure out what was going on. We anxiously awaited the day it would be turned on and we would see if the implant was successful.

January 10, 2000, is a day we'll never forget. Just as memorable as the day he was born, this was the day that Taylor's hearing came to life. Taylor didn't begin speaking in sentences or singing songs that day. The simple flutter of his eyelashes when sound was introduced through the cochlear implant was all the audiologist needed to know Taylor was getting sound through the cochlear implant. A new phase in his life had started.

Over the next few months as his implant was programmed, we witnessed many things. In fact, we have labeled that year as the one within which we witnessed miracles almost daily. This child was experiencing sounds for the first time. He still communicated to us in sign but he was telling us he heard the birds, he heard cars driving by, he heard a train whistle.

Soon he recognized his name. I would often call him several times a day just to see him turn to me. When he would look, I would sign to him ''I love you'' back without looking up so his play would not be interrupted. He had caught on to my little game.

Taylor went from not hearing us at all, to responding to our call from his room upstairswhen we were downstairs. He no longer had to be in a world by himself!

Today, after a year and a half, Taylor is detecting speech at 15dB. That's a little below the level of a whisper. He didn't hear speech before, and he only heard the low frequencies at 85 dB. 85 dB is about how loud I can yell, from about 12 inches away.

The once faint sound of a jet engine was now so loud that sometimes he'll take the implant off -- because it was too loud!

Taylor hears the phone and can recognize who is talking on the other end. He hears the meow of our cats, often teasing them to get them to meow more. He hears us say, ''I love you'' and returns it by saying, ''uh ooh''. He tries to mimic our words and wants to know the words for everything. A whole new world has opened up for him.

Has our journey been easy? No, it has often been accompanied by pain and tears. Has it been fun? Not always, but everyone must make the choice to deal with the things that God allows in their life or wallow in pity. One thing is for certain, we wouldn't trade this journey with anyone for the joy we receive from this little boy experiencing everything new for the first time will never be matched by anything.

Taylor has taught us to appreciate every little thing-nothing is taken for granted. Our lives are not limited by disability; we have been given the ability to experience it more fully and appreciate it every step of the way!

Visit www.bionicear.com for more information about Advanced Bionics.

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