One Family’s Journey

“If We Only Knew Then…”

By Dains & Sonia Matthew
Florida Hands & Voices

Madison Sara Matthew

Three years ago, we were overjoyed at the news of having a baby girl. Soon after, we started making all the preparations from picking out the safest car seat to painting polka dots in the nursery.  Dirty diapers…bring it on!  We were mentally prepared for the typical challenges of parenthood headed our way.    

The big day finally came and she was here--our beautiful baby girl-- Madison Sara. The hospital rituals went as planned with just one minor issue.  Madison did not pass her newborn hearing test. We were told not to worry since a negative result is often caused by fluid in the ears. We didn’t think much of it.  We were scheduled to retake the hearing test in a few weeks.

One month later, there we sat after the follow-up exam in disbelief at the news we had just heard.  Madison had a profound hearing loss. Life threw us a curveball to say the least. We never planned for this unexpected challenge. How could this be?  We had a very normal pregnancy.  We have no history of deafness in our family.  Could it be a mistake?  The questions kept circling.   

Once the initial shock wore off and the news had settled in, we were ready to move forward.  With the help of Part C, Orange County Schools and all the dedicated resources, we were able to maneuver through this storm. We were determined to do everything possible to ensure Madison would have the best possible outcome. Madison was fitted with hearings aids when she was four months old while also learning sign language. After six months of hearing aids with no benefits, we had to identify a different course of action. Thus we were introduced to the world of cochlear implants.

After struggling with the question as to whether this was the right path and so on, we finally decided to get Madison implanted. With that decision also came more questions. We soon found that we had three main options when it came to CI Implants.  Making a decision on which device to use also seemed overwhelming. Everyone seemed to have an opinion on which one was the best. Often times it seemed that every opinion we got had some bias attached. We decided to do some extensive research on the devices and were determined to make our choice based on our own findings.  At last, we concluded that every device had its own set of strengths but the technical capabilities of all the devices were being constantly enhanced by the respective companies. Our final decision was made on the basis of “look and feel” of the device and the portability it offered. (The kinderclip offered by Advanced Bionics seemed to be convenient.)

After all the pre-op testing and appointments, the day of the surgery finally arrived. Walking into the hospital with a sleepy one year old contrasted with how nervous we were. Although the surgery itself was just under two hours long, the wait seemed to be an eternity. We were relieved when the doctor told us that everything went off without a hitch. Madison slept the whole way home and the rest of the day.  We heard from numerous people that the recovery is rather quick and we saw that as Madison ran around and played as normal the next day. Madison had her first surgery in September and her second in December of the same year. Another month after her first implant, we were ready for yet another milestone—the activation. Her first implant was activated one month after surgery. It was a joy-filled occasion to see Madison burst into tears at hearing her very first sound as the device was turned on. The second implant was turned on January 2010. While she showed no immediate response during the second activation, three weeks later we started seeing dramatic changes. Any doubts as to the effectiveness of the implant and how well they worked were answered as we saw Madison’s reactions. The audiologists continued to tweak the device to ensure optimal usage.  While Madison was initially responding at 98 dB, she responded to 40 dB with one implant and 25-30 dB with both implants. However, our biggest indicator of the effectiveness of the device was how well Madison could imitate the sounds she heard.  Madison uttered her first word, “Mama,” three months after her first activation date and has been speaking ever since. Madison continues to have three weekly therapy sessions with the district early intervention specialist, the Auditory Verbal Therapist (AVT), and the speech language pathologist.  

  While we often wished that someone could just tell us what to do on this occasionally confusing journey, we are glad that we made this decision. We realize that as with any other success, hard work and dedication is key. In retrospect, the path we took to get here seems easy. We always say, “If we knew then what we know now, we would’ve saved ourselves a lot of heartache.”  Madison reminds us every day of that as she progresses exponentially in her speech.  Now one year past her “hearing birthday, Madison is proficient in her ABC’s, counts from one to ten, knows all of her shapes and colors, prays by herself , spells “dog” and “cat” and insists on everyone using “please” and “thank you.”  Madison’s list of words grows almost daily, and we are ecstatic when she utters a new word.  We never realized how much joy could be found in such little things, but we thank God everyday for His blessings.

One thing we’ve realized along the way is that while others may not be able to give you the answers you are hoping to hear or help you make decisions for your own child, leveraging the network in the DHH community helps ease the decision making process through reliable information.  Today, with the help of organizations such as Hands & Voices, we are able to share experiences, gain knowledge from the experiences of other families and hold the key to opening up a world of resources.