Our Story with Cochlear Implants

20160801_202438As we celebrate Cochlear Implant Awareness Week in Pennsylvania, I want to share my family’s experiences with our children regarding their cochlear implants, our experiences with the Hearing Center at Children’s Hospital of Pittsburgh of UPMC, and the Aqua+ Kits that they recently received this summer. It has been such a long, but amazing journey that I hardly know where to begin.

My son Daniel was first diagnosed with hearing loss at around 1 ½ years of age. Shortly after that, he was diagnosed on the autism spectrum as was his older brother. It was quite an overwhelming experience to receive three diagnoses in the same year. We tried hearing aids, with no success. Daniel has auditory neuropathy with a bilateral neural loss, so our next option for amplification was cochlear implantation. I knew nothing about cochlear implants and there was no information on children with auditory neuropathy spectrum disorder, autism spectrum disorder, and cochlear implants to research so we were in uncharted territory. We were so blessed to have the amazing staff at Children’s Hospital working right alongside us and supporting us during each step. Dr. David Chi and Pam Dickinson were amazing and were truly dedicated to Daniel’s success. Emily Morris joined our team upon the diagnoses of our twins.  We couldn’t be luckier to have these wonderful individuals in our lives.

Having one child who was deaf made us very aware that we needed to test any future children early.  Daniel passed his newborn hearing screening at the hospital, so we knew that the test results were not an indication that we did not need to test again. When we had our twin boys, my husband and I wanted to test them as early as possible. They too passed their newborn hearing screenings; however, at just one month old, they each showed high frequency hearing loss during their natural auditory brainstem response (ABR) tests. Like Daniel, we watched and retested. Like Daniel, the sedated ABR test showed auditory neuropathy and bilateral neural loss. We knew how successful the cochlear implant had been for Daniel, so we set out on the same path for Brandon and Nathan. Through it all, their big brother, Christopher, was always there to cheer them on and to help them. He was the first person to get Daniel to speak and to connect with others. They all look up to him.

I have shared in many wonderful experiences with my children as they learned to listen, to speak, and to enjoy the world around them through music, songs, and20160722_190732 friendship building with their peers.  My favorite memory is one I share often in my writing and in conversation. It was four years ago and just after Daniel had received his second cochlear implant. All three boys received their second implant during the same year, but Daniel was the first. We had gone to our church fair and were walking past the booths to look around.  As we were approaching the stage, Daniel stopped.  He looked around and then looked at me. He asked what the sound was that he had heard.  I looked, pointed to the stage and said, “That?  It’s music.  It’s the band.” He paused. He tapped his foot. He moved his body. He started to dance. He had never heard music before that day. He had never danced. I stood in a crowd of people with tears in my eyes. My son had heard music for the first time and was dancing.

My twins are hysterically funny. They sing, they dance, and they tell amazing stories. They are very entertaining and outgoing. This past year was the first year they attended their home school. All three boys previously attended DePaul School for Hearing and Speech before they mainstreamed to their home school district. Brandon and Nathan scored very high in every category including reading. Daniel earned distinguished honor roll for the second quarter in a row this past year as well.  In addition to strong academic performance, Daniel also plays music in the orchestra.  Daniel previously played the violin and is now playing the cello.  He just received his new Nucleus® 6 Sound processors a few weeks ago before we left for vacation with our family.  I am anxious to see how he performs in orchestra this year with it.

The boys were able to get Aqua+ accessories shortly before we left for vacation. Just listening to them talk and play with each other made my heart sing. It truly made a visible difference in the way they interacted with each other when swimming as well as their hearing family members. It was also a great weight off of my shoulders to know that they could hear me call them if they were in danger, in the water, or on the beach. The Aqua+ provided quality of life through the ability to enable them to communicate with those around them as well as a safety feature during swimming and water activities.

We are eternally grateful for the opportunities, experiences, and amazing people we have met and worked with along the way from early intervention and DePaul to the continued efforts by the amazing staff at Children’s. My children have achieved so much in just a short time. I can’t wait to see what they will do next. There has never been anything but high expectations for each of our children. We have always said that we will simply try. We don’t know what they are capable of until we do.  Our boys have worked so hard and accomplished more than most children of their age due to their hard work, dedication and perseverance. We couldn’t be more proud of the individuals they have become.

The Hearing Center Auxiliary of Children’s Hospital of Pittsburgh Foundation supported the cost of Aqua+ cochlear impact accessories for over 130 children in our region. Thanks for their support!

Governor Tom Wolf has recently authorized the week of July 31 to August 6, 2016 to be Cochlear Implant Awareness Week in Pennsylvania. Pennsylvania is now the third state in the country to observe this week.