Family Stories
Peter's Story
Our son Peter was born October 26, 1999. We found out through the early infant hearing screening process, 48 hours after birth, that our son could not hear. We found out later that he was one of the first in Oklahoma to be identified through the early infant hearing screening . At first, we were in a state of disbelief. Everyone told us that the tests could be wrong, that he was so young, and that as a result, we should really wait until the next test to confirm our fears. Since there was no birth history or genetic history, we too hoped that the test was wrong. Regardless, we spent the first weeks after Peter’s birth when we should have been enjoying his birth, “testing” him to see if the screening was wrong. But those “tests” just seemed to confirm what the screening had found. He really didn’t turn around. He didn’t even seem to hear when we took him outside to hear the civil emergency siren when it went off. One of our first official steps was to take Peter to his pediatrician, roughly about a week after Peter was born. Her reaction was not one of alarm either. In fact, she told us to “wait a month or two” before we got the second test. Fortunately, I had already contacted a number of sources, including the Internet, that stressed that early identification of hearing loss was essential. So I got a bit “pushy” with my pediatrician and asked for an immediate referral for a second hearing examination. That test conducted at two weeks, and the follow-up test at six weeks (the date as recommended by OU Health Sciences), both confirmed that he did have a hearing loss, and that it was profound bilaterally, as his 2 ABRs indicated no response at 105db. The day after his third test, Peter was fitted with Phonak hearing aids.
Our first reaction was one of terrible grief and immediate questions. Would our son every say “mommy” or “daddy”? Would he need to go to a special school? Would he ever marry? Would he be able to get a decent job? Our only encounters with the hearing impaired community at this point had been our experiences when we were in school, when hearing impairments meant special classrooms and the exclusive reliance on sign language. We were told after the second test that we needed to explore communication options for our son. We knew that if possible we wanted our son to be able to talk. At first, total communication appeared to be the best option. But after doing quite a bit of reading and some observations/interviews, we decided that the oral communication option was the best for our son, using Auditory Verbal Therapy. Everything we read told us that the best chance for Peter to speak and be placed in a mainstream school setting was for Peter to use an oral option. Some of the material we read about average reading levels and/or speaking levels with some of the other options just made us grieve even more. Peter began receiving AVT at HELP, or the Hearing Enrichment Language Program, just after he got his hearing aids.
The first year honestly was a very frustrating one for us. This is despite the fact that the day after he was fitted, Peter turned his head from across the driveway after we called his name. But we spent the year getting audiological checks, hearing mold updates, battling ear infections, and trying to get Peter to keep his hearing aids in his ears. For a while, Peter wanted to see if they tasted good, or if they bounced on the tile in our house. There was also a time when he would pull his hearing aids out 30-40 times a day, and we would constantly be putting them back in. But the most frustrating part of all, was that even when the hearing aids were really working, Peter only heard the loudest of sounds, and could only barely hear speech. Hearing aids had put Peter in the 60-65db range, but we knew that was not good enough for speech. So we decided to get a cochlear implant in his right ear for Peter, and his first surgery was on December 11, 2000, and he was activated on January 16, 2001. Peter at the time was one of the earliest to receive a cochlear implant because the FDA protocol from cochlear implants shifted from 18 months to 12 months, right before his first birthday.
The cochlear implant when combined with the therapy that he received from HELP turned out to be our best decision that we could have ever made for Peter. The next three years, until his fourth birthday, were spent teaching Peter how to use the device so that he could hear and speak. There was still some frustration. We spent the initial eight months on input, input, and more input, and yet still we received no indication from Peter that his hearing had improved. But very gradually, Peter showed progress. We practically shouted from the roof tops when we heard Peter’s first words at 8 months post-activation, and we were even happier when he began to use two word combinations at 14 months post-activation, or at about 2 ½ years chronological age. The progress just seemed to continue, and by Peter’s fourth birthday he knew all of his colors, shapes, numbers, planets, states, football teams, monster truck names, their drivers, and their states, and was speaking in 10-12 word sentences. He was also far above grade-level expectations on every standardized test.
Yet, after his fourth birthday in October 2003, we began to have some questions. We made a special trip to the Monterey Bay Aquarium over Christmas Break while we were in California, and Peter just screamed. He kept saying that it was too loud, too loud. At times, when we were in the car or the grocery store, Peter would say “huh.” It became clear to us that despite Peter’s unbelievable progress, that he was sometimes having difficulty in noisy environments. We put a hearing aid in his left ear in February 2004, and quickly we learned through booth tests that he wasn’t getting much out of that ear. During a HELP workshop in April 2004, there really seemed to be the belief expressed that bilateral cochlear implants would become the standard of care in the future. So we started to ask, “Why not Peter?” We put in our health insurance application for a second cochlear implant just before we left for the Alexander Graham Bell Conference in Los Angeles in June 2004. After that conference, much of the doubt really went away. We listened to four presentations on bilateral cochlear implants at that conference, and we came away with the list of advantages and disadvantages of getting a second cochlear implant for Peter.
The advantages were:
• The possibility of approximating bilateral hearing, with the better ability to hear, discern in noise, and to localize – or “better hearing now” as we learned at the conference;
• The ability to have hearing in the second ear, if the right ear needs a battery, is down, etc.;
• The realization that Peter was starting pre-kindergarten at Edmond Public Schools in August 2004, with its noisier, more active environment;
• The fact that he was doing so well with just the one made us wonder about the posssibility of what he could do with two.
Yet there were some clear disadvantages we had to consider:
• The most obvious was another surgery with all that entails;
• The realization that Peter was now almost 5, and that he would be much more aware of this surgery than his first;
• Our worries about how this would affect Peter psychologically, since he was more aware this time. Would it change how he would view his first cochlear implant? Cochlear implants in general? This was a real fear for us. Peter loves his “microphone” and we wanted him to continue to do so.
• The possibility of future advances –whether it be hair cell regeneration or the fully implantable cochlear implant.
But here we made the analogy to computers. If you wait forever to buy the latest computer, how much will you lose while you are waiting? We wanted to take advantage of all the things that Peter could gain now, when he is so young and at this crucial learning age.
But one of the most compelling reasons for a second implant was Peter. We still would have done it anyway, but Peter made the decision even easier for us, by being so willing to consider the second implant. He really has been a trooper with all of this, and he truly seemed to want the second microphone.
While our health insurance approved the second cochlear implant fairly quickly, we quickly realized that we would have another problem. Peter was supposed to begin pre-kindergarten on August 25, 2004. The first surgery date we were given was August 18, 2004. Should we do the surgery exactly one week before he was supposed to start public school? Ultimately, we decided to do it anyway, even though we realized that this was not the ideal time. We didn’t want to wait until Christmas 2004, or Summer 2005, the next time that Peter would have extended breaks from school. The end result was that Peter got his huge bandage removed the day before he started pre-kindergarten and he went to school that first day, showing the results of having surgery one week before. When Peter was activated on September 23 and 24, 2004, Peter also experienced his classmates asking dozens of questions about his new implant. That was initially a tough time for Peter, as he truly seemed to be aware of what it meant to have a microphone (and now 2!) since his friends kept asking him questions. Yet despite all of that initial hardship, I am still glad that we decided to do the surgery then. Peter now has a six-month head start compared to if we had waited for Summer 2005, which probably would have been the most ideal time.
Peter’s journey with the second cochlear implant has been been confusing at times, and sometimes frustrating, but also exhilirating too. It has been confusing because a second cochlear implant really does mean we are going to be starting over and facing new challenges. In the hospital, we looked at Peter after his surgery and quickly realized that the new bandage completely covered his right ear, making it impossible for him to wear his first implant. We had to get that fixed immediately. We have also had to explain to even our families that it is not just “plug and play.” A second cochlear implant does not mean that he hears great immediately in that second ear. The second ear is basically a body part that has not been used for the last five years, while his right ear has had the benefit of a cochlear implant. This meant that Peter had to relearn the Ling 6 sounds test because we hadn’t been using it in therapy for over a year.
Eight years ago I started my first job as an RN in a local Women's Hospital. Part of my job was doing Newborn Hearing Screens. I didn't realize at the time how important hearing screens were and how much it would change my life years later.
In June 2002, I had my second child at that very hospital where I worked. My pregnancy was great, my delivery went well, and we had a precious baby boy with 10 fingers and 10 toes. We couldn't be happier, our family was complete.
The next day a lady came in to do Kale's hearing screen, as she wheeled him to the nursery, I didn't think a thing of it. She came back about an hour later and said that Kale had not passed his screening. She started telling us all of the many reasons why this could be and said they would re-test him the next morning. I still didn't think a thing of it because I knew how many times that had happened to babies we screened and they always passed the second time. My husband automatically assumed that our son was deaf. I would not even entertain that idea.
When Kale was two days old, another screener came in and wheeled him away again to repeat the test. She was gone for a long time and I started to wonder if maybe he had failed it again. Finally she came back in and told us that he in fact failed the hearing screen again. I was really worried at that point. So we spoke with our pediatrician about it and she referred us to the Hough Ear Institute.
After we came home from the hospital, we couldn't help but to test Kale's hearing ourselves. We rang bells, slammed doors, and had our daughter scream as loud as she could, all with no response from Kale. I was still reluctant to think that he could be deaf. We had no family history, no complications and he was healthy, so how could he be deaf? The day that it hit me and I knew there had to be a problem was the day when my husband stood over our son who was lying on a blanket on the floor wide awake and he blew a whistle so loud that it hurt my ears and Kale never even blinked an eye. That is when I knew!
Three weeks later we were able to see a Doctor at Hough and they preformed the ABR on Kale. I was very anxious to get some answers and it was a long two hours sitting in a chair holding my newborn son waiting and wondering. Finally, the test was over and we got the news, our son had a profound loss in both ears. I couldn't believe it. Not only did he have hearing loss but it was a profound loss, he was deaf. As soon as we got to the car I lost it, I cried for days thinking about all of the things he would miss out on. I wanted him to know my voice and hear me say "I love you." I wanted to read him bedtime stories and sing in the car and take him to movies. I wanted him to have all of the opportunities in life that his big sister had. I was devastated.
A week later we met with the ladies at the HELP clinic and they gave us so much information on hearing loss, and amplification, and they gave us a lot to think about. We had to decide how we wanted to communicate with our son. I already knew that I wanted him to talk and listen and function as normally as possible. So the choice was easy for us, we wanted to do A-V therapy and amplify him as soon as possible.
At 7 weeks of age, Kale got his first pair of digital hearing aids. We struggled with ear molds, and keeping them in his ears, and getting new ones made every other week. It was hard to deal with and he wasn't responding too much. We stuck it out for a year and the day after his first birthday, Kale had surgery to get his first Cochlear Implant. As soon as it was activated, he smiled. He loved the sounds he was hearing for the first time. It was a joyous occasion. He didn't know my voice at first, but when he realized that I was talking to him, he smiled. He welcomed every sound with a smile. That was what we had been waiting for. We spent the next year teaching him to listen and talk, going to therapy and pointing out sounds to him.
Then in August of 2004, Kale was implanted with his second device on the other ear. It wasn't as easy as the first one; he had a hard time for several months. He didn't like the sound or loudness of it. But after some adjustment time, he has learned to listen from both implants and is doing very well. His vocabulary is exploding and his speech gets better every day. We see improvements in him almost daily. We feel so blessed to have the technology available to us.
Looking back, I would not trade this experience for anything. We have learned a lot, grown a lot, and we don't take our hearing for granted anymore. The best thing that has come out of all of this is that we have a precious baby boy who doesn't have to live in a world of silence. I am grateful for the newborn hearing screen and how it changed our lives.
Sincerely, Jill
It is One O'clock in the morning of March 21, 1998, when our first born entered the world. A cheer goes up in the L&D waiting room as both our families celebrate her healthy arrival.
We had searched baby books for just the right name. I found the name. The song jumped into my head and I couldn’t help but think “Aubrey”. I love the girl. I love the name. She was our first miracle.
Fast forward three and a half years. Aubrey, Mark and I sit in Dr. Baker’s office at the Hough Ear Institute. I think, “Why are we here?” This is nothing more than another ear infection or fluid in the ears. Why did we make the two hour drive here? Did we really need another opinion?
Aubrey’s difficulty in hearing became evident on the drive home from our beach vacation. Are we over reacting to her saying “what?” over and over again? When we got home, the pediatrician treated her for ear infections. Maybe it was just that. However, something continued to nag me. My mom’s intuition is in overdrive. The audiogram was abnormal due to the fluid, wasn’t it? The ENT put tubes in and told us to wait 6 weeks to retest. Prior to our vacation, Aubrey had scored wonderfully in the tests required for an advanced academic preschool program. Her vocabulary is incredible. This is no big deal... but I just had to make sure.
Dr. Baker walks into the office with the CAT scan in hand. He begins with words that indicate there is a problem. My mind races to decipher, “large” something, hearing loss, permanent, no corrective surgery, progressive, aids, speech therapy, ear molds. The words float in the air. Dizzy-my head feels light. A wave of nausea hits as I grab for the chair and hang my head to the floor. I pray this isn’t happening. My husband and Dr. Baker continue without me. How long will she have her hearing? Lord, please, I can’t do this. I feel her little hand squeeze mine and say “Mommy?”
The drive home was almost unbearable. Mark and I couldn’t look at each other without tears. We walked into our home where my Mom and Dad anxiously wait for good news. One look at our faces and they know. My tears begin to fall. Mom smiles, turns, and puts into my arms, our two day old infant. She is a beautiful new life and I am in awe of God’s gracious gift named Claire. I thank him for our children and family and wonder what kind of gift could ever be found in the hearing loss journey Aubrey is about to take.
Four years later we can count many gifts.
A Gift—We were looking for answers. A friend working with a SoonerStart professional suggests the Hearing Enrichment Language Program and Hough Ear Institute. We have been fortunate to be a part of their medical team approach. As parents, we don’t have to coordinate the audiologist, speech assessments, auditory verbal speech sessions, doctor appointments, and family workshops. The staff and professionals work together to coordinate and provide the services for hearing impaired children. Aubrey is blessed to be in Oklahoma where these professionals set a standard of treatment and therapy that draws national attention.
A Gift—We have an outstanding Auditory Verbal Therapist, Wendy DeMoss. She is a rare find, professionally and personally. Wendy, who is a therapist with H.E.L.P., traveled to Tulsa twice weekly to provide therapy for Aubrey. We began therapy immediately. Wendy allowed us to grieve and lead us to accept the journey and expect success. Aubrey’s speech skills are delayed and the bar is set high to cover as much language as quickly as possible. Early intervention with access to the brain’s pathways will be the key to Aubrey’s success. One year later we are catching up. Two years later she is equal with her peers. Four years later, she is inching ahead of her peers. Sweet success!
A Gift—New Haven Day School. The Pre-K teachers and staff offered their full support. The use of the environmental assessment, seating placement suggestions and use of the portable sound field system insured Aubrey’s pre-school success.
A Gift– Mainstreaming. Aubrey is the only student in her private school with hearing aids. The right teacher can make the difference. Even though Aubrey is not on an IEP, I make appointments with the principal and new teacher prior to classes in the Fall. I provide background on Aubrey’s diagnosis and bring literature about hearing loss. I demonstrate the personal F.M. system and explain why we use it. I ask the teacher to become a part of the team. We develop a system of daily progress reports, previewing new and difficult material, and reporting equipment problems. Aubrey’s private school experience has been great. We chose to go to a private school due to the smaller teacher-to-child ratio and wanted Aubrey have very high academic standards. They have worked with us on acoustics and have been very open to listening to our suggestions for Aubrey to get the maximum amount of verbal input.
A Gift—Alexander Graham Bell Association for the Deaf and Hard of Hearing. During our second year with H.E.L.P., the National AG Bell convention was held in St. Louis. We decided to go and try to connect with other parents of children with hearing loss and learn more about Large Vestibular Aquiduct. The three days we attended gave us the opportunity to be enlightened and encouraged. We left feeling empowered by the information and family support. Since I think so highly of the organization, I became a board member of the Oklahoma Chapter of AG Bell two years ago.
A Gift—Friends. We can’t imagine the journey without the new friends we have made. In sharing our loss, we unite with other parents and seek the best future of our children.
The Gift—A child so anticipated, so loved, so unique. Aubrey is her name. She loves gymnastics, roller coasters, snow skiing, her little sister, dogs, reading and her friends. She is seven years old and a successful mainstream student.
By Delia
Morgan's StoryMorgan was running in the backyard this past July, playing tag with another little girl at an outdoor wedding we were attending. As I was watching they stopped and the little girl asked Morgan, “What is that on your head?” I immediately started to step forward when Morgan answered. “Oh, that’s my ear, it helps me to hear my mom and dad. When I was little the doctor cut a circle and put it inside my head and now I can hear. If I don’t wear it then I can’t hear.” “Oh” the little girl said and off they ran continuing their game. I sat awestruck at the simplicity of children, the ability they have to accept and move on, and the wonderful realization that my daughter will be fine. It is those moments that I treasure in my heart.
The journey of hearing loss that we all travel is a road that has many twists and turns, ups and downs. The emotional toll at times can be very high; full of pain, hopelessness, anger, and fear of the future. It can consume your lives, your marriages, and sometimes your entire being. Even after 6 ½ years, there are days when I don’t think that I can do this anymore. But I just need to look at my beautiful happy daughters to realize that it is worth all of the struggles, trials and effort that go in to their lives. The moments like the ones above are the ones that see me through the difficult days, and allow me to be thankful for the opportunity to walk alongside my girls in this journey.
When you are expecting a baby, you always dream of the kind of person that he/she will be. You have an image of their personality, their occupation, lifestyle and ambitions. When Morgan and then Katie were diagnosed with profound hearing loss, I felt that all of my dreams were shattered. I was losing the image that I had of the women I thought they would be. The future was now replaced with a big question mark. But 6 1/2 years later, the women that I picture are even stronger and better adjusted. I believe that the obstacles that they will overcome will shape them into better women.
One of the reasons that I believe that we have been successful is because we have made the conscience choice in how we have responded to Morgan and Katie, to our friends, family and those we have met. We have chosen to be positive, encouraging, and take the opportunity to see the good in each situation. We still run into people who disagree with the way that we have handled things, but instead of letting it bother me, I now use it as an opportunity to share our incredible journey and success that we have had. This is part of our lives— it is what we do. Nothing that I say or do can change the fact that my daughters have a profound hearing loss. We do the best that we can, by using the technology that we have in order to be as successful as we can. Sure there are some things that we do a little differently than other families, but hey, everyone is a little different anyway. By choosing the auditory-verbal path, I believe that we have given both of our girls the best tools they could have. In hindsight, the women that I dreamed of-are no different from the women that they can become.
The support system put in place by programs like HELP and AG Bell are also great ways to encourage yourselves and to find a sense of normalcy in you life. When you are in the midst of a trial, you always feel like you are the only ones in the whole world that ever has gone through the same thing. By involving yourself with others in the same situation, it helps you to cope, not feel as alone, and is also a great source for ideas. It has really helped Morgan to realize that there are other little girls who also have special “ears” like her. Another one of the highlights was for her to meet Heather Whitestone and realize that not only did she also have a cochlear implant but that she was a mother. Up until that point, Morgan had told me that she couldn’t be a mom because none of the moms that she knew had ears. By offering positive role models, it encourages us as parents in the endless opportunities, and gives our children the ability to see older, successful, adults who have traveled the same road and finished well.
The most encouraging thing that was ever said to me as a parent, was actually said by Heather Whitestone in her speech last spring at the HELP benefit. She was talking about raising children with hearing loss and some of the trials that go along with it; but then she said that these precious children were given to us for a reason. It is only the parents who are strong enough to handle it, who are given the opportunity to walk this road. I do consider it a blessing in our life. Our lives are filled with many more opportunities, wonderful people, and the ability to daily witness miracles. We are blessed.
By Marissa
Marissa and Glenn live in Claremore and are the parents of three children: Josiah, Morgan and Katie. Morgan and Katie both have cochlear implants.
I will never forget the day my husband and I found out we were going to be parents. Our long awaited news didn’t come by means of a positive pregnancy test or some picture on an ultrasound but rather an email from our adoption agency. Our agency wanted to let us know about a little baby girl named Min Jeong (Korean for clear fall skies) born September 2001 who was eleven weeks premature and living in Korea. We of course were excited, nervous, and a bit concerned about her medical history. Our agency wanted us to have a pediatrician look over everything and for us to pray about our decision and to let them know if we would accept this referral. My husband and I made an appointment with our pediatrician the following day and had him look over everything in this little girl’s file. After he read over all of the medical records he said “...it looks like she had a rough start but from the looks of it, she seems to be a fighter and is thriving…now, you know I don’t have a crystal ball and I cannot tell you what things will look like down the road, but it looks like she is fine”. After much thought, prayer, and consideration we knew in our hearts that this little baby girl was meant to be our daughter.
Once we accepted our referral we were finally allowed to view the very first pictures taken of our daughter. I think my husband and I were expecting to see some poor, malnutritious, little baby. Much to our surprise her pictures revealed a precious peach of a little girl with chunky cheeks and the most determined eyes I’ve ever seen. We were in heaven and walking on a cloud those two plus months we waited for our travel call to bring her home. Every medical update we received prior to her arrival confirmed what we already knew in our heart. She was healthy, she was growing, and she was waiting on her mommy and daddy to fly over 7,000 miles, spanning 10 time zones and crossing the Pacific Ocean, to meet her for the first time.
Finally, the days had come when we made our travel plans and flew to Korea. The first day there we had our first meeting with Min Jeong (Malia). If there were any lingering concerns about her health, they were all washed away in this meeting. She was the most beautiful baby we’d ever seen and we kept tearing up in disbelieve that God entrusted us with such an amazing treasure.
Once the haze lifted and reality set in, we were 35,000 feet in the air again but this time with a screaming baby in our arms. Malia cried close to 20 of the 24-hour journey back home to Oklahoma. Once we landed, her tears stopped and she was the happiest, giggliest, baby you’ve ever seen. The next day after our homecoming, we immediately took her to the doctor for a routine first doctor’s visit to have her checked out and he confirmed a severe double ear infection. No wonder! The final medical check on Malia before we left Korea indicated no issues or problems.
After a few months home with Malia, we were really getting to know each other. Our adoption agency recommended that we contact Sooner Start to have her screened for any potential developmental delays so we could proactively address them if any were found. In August of 2002, Sooner Start came out and performed various tests to establish a baseline. I expressed concern to Sooner Start over her bout with a series of ear infections. They performed a tympanogram test and sure enough both ears showed “flat”, indicating fluid in the eardrums. We were very concerned so we went back to our doctor who rechecked them and said they were “fine”, no fluid and no infection. This went back and forth for a couple of months. Finally, both Sooner Start and our pediatrician confirmed that every thing looked “fine”. She was growing and understanding simple commands at 12 months (September 2002) so we thought we were home free. Unfortunately, that feeling didn’t last long.
Once Malia hit 18 months old in the spring of 2003, I became more and more concerned with her speech. She was only saying a few words and even though I tried very hard not to, it was difficult not to compare her with some of her 18 month old play companions who seemed to be more advanced with their speech. I made another call to Sooner Start for a reevaluation and they agreed there seemed to be a gap so they signed us up with a speech therapist that we saw once every 2 weeks. Between the ages of 20 months and 24 months, I took Malia to two different audiologists in town who both performed a tympanogram test and a sound booth test. They both stated that there was nothing wrong and that we needed to give Malia more time due to the fact she was a premature baby further complicated by a remotely possible English language “delay factor” due to international adoption. My husband and I felt like we were banging our heads against a wall.
Fast forward to Spring of 2004 when I remember very distinctly talking to our Sooner Start speech therapist on my cell phone while shopping at Wal-Mart saying, “I really think Malia may be having a hard time hearing…can we get a third opinion and make sure every thing is ok?” Our therapist disagreed but said she would get a referral out to be seen by another audiologist.
Sooner Start referred us to Dr. Lambert in May 2004. She took us back to a sound booth at the University of Tulsa. I immediately started thinking, “Well, here we go again.” Malia did the best any 2 ½ year old could do in a sound booth and when it was over, Dr. Lambert started going over the audiogram and began to say that from her findings there was indeed a hearing issue to address. At that moment, I just lost it. I began to cry so she handed me a tissue and said, “This IS hard, I’m telling you something your mommy intuition already knew”. To this day I cannot recount that visit in my mind without tears streaming down my face. To feel extreme relief and profound sadness all in my one breath...is more than words can express.
Dr. Lambert immediately set us up with Dr. Nancy Ingram for an ABR test in June 2004. We knew walking into the test that we would be getting news that Malia’s hearing was poor. We were unsure of just how bad it really was, if it would get worse, what was the root cause, or more importantly, how best to mitigate the loss and with what technology and therapy.
After the ABR test was complete, and Malia was sleeping off her meds, Dr. Ingram said “Now, before we go into the details of the test results, remember that the little girl who is lying on this table is still the same little girl you brought in here.” As we braced ourselves with our minds spinning, we heard just bits and pieces, of the extent of our little angel’s hearing loss. Malia was moderate to severe in one ear and severe in the other. She needed hearing aids and she sent us over to see someone for ear molds immediately after the test.
Once we got home and we put Malia down for her nap that day, I could do nothing but lie across my bed and cry. My husband was trying to be the strong one but felt the weight of the world on his shoulders. I just laid there staring out the window weeping. My thoughts drifted back to that conversation we had with the pediatrician looking over the referral about “unknowns” and “crystal balls” and then it struck me how you could truly love someone so much that it hurt.
Malia was immediately placed in the strongest hearing aids available to her and we started speech therapy with Wendy DeMoss in July of 2004. Those first few months with her hearing aids were a blur. I was still in mourning for her and wasn’t quite ready to engage. I remember that first meeting with Wendy being so out of my comfort zone. I kept thinking, “I need to listen to what she’s saying but I can’t.” I couldn’t because, honestly, I hadn’t truly accepted where we were at. It’s as if someone had dropped me off in Siberia and said “Well, good luck”. After about 3 months into therapy, I finally snapped out of it and began to truly understand the work required getting Malia where she needed to be. We were on a roll and she was making progress, slow progress, but progress just the same.
Another earmark on our journey to hearing was a phone call I received late one evening in October of 2004. It was Wendy. This was her “gentle” phone call expressing concern regarding Malia’s progress and exploring the possibilities that a cochlear implant would give her. As she began to explain her thinking, again, tears started to stream. In January 2005, we met with Dr. Stanley Baker. He and Dr. Wolfe both concurred that a cochlear implant would be Malia’s best chance at accessing speech. Later that month Malia underwent a CAT scan in preparation for her surgery which amazingly revealed the source of her hearing problem. Malia was diagnosed with Large or Enlarged Vestibular Aqueduct Syndrome. With this diagnosis came some greater understanding for all of the times we received such fluctuation in her past audiograms.
Finally, we had our answer and it turned our decision to implant from hopeful to imperative. Malia was implanted with her first cochlear implant in March 2005 and her second implant in May 2006.
The strides she has made in the last year have been nothing short of amazing. Today, Malia is your typical 4 year old, forever asking questions, wanting detailed explanations of all the equipment in every doctor’s office that we visit, and picking up on incidental language that I wish she hadn’t!
I can honestly say that night that Wendy called, I didn’t like what she had to say one bit. In fact, I’m sure I went to bed a bit disillusioned with it all. But now, after having both surgeries completed and one full year of being implanted, my husband and I will be forever grateful to Wendy and the staff at H.E.L.P. for all they do everyday for all of the H.E.L.P. kids.
By Dana Horton
–Malia’s
mother—Tulsa
