Keri S. jumped into action when learning her son, Shane, was born with a sensorineural hearing loss. After receiving advice to look into cochlear implants as a hearing solution when his language was not developing, she was ready to make sure her son could live life without limits like his older brother. Fast forward to now, Shane loves to imitate his brother, is starting to form words and is becoming quite the little swimmer. Keri reminisces about advice she was given by other moms of children born with hearing loss and talks about gratitude for the future Shane has ahead of him:
When Shane was 3 weeks old, we went to our local children’s hospital to get an auditory brainstem response test (ABR) done. We were told that his hearing loss was moderate in his left ear and moderate to severe in his right. Our awesome audiologist answered our millions of questions and told us to come back in seven weeks to confirm.
When he was 10 weeks old, we returned to the children’s hospital and received the same results. When Shane was 2 months old, we met with his amazing ear, nose and throat (ENT) doctor and found out he had sensorineural hearing loss. At 3 months old, he got his first pair of hearing aids! Our motto was, ‘Eyes Open, Ears On!,’ and we worked hard to make sure that he had his hearing aids on all waking hours.
Despite Shane being so vocal at home, he was not performing well in the audiologist’s booth testing. When Shane was 9 months old, he got a sedated ABR to check his hearing levels. After the ABR was done, we met with the audiologist who delivered some shocking news. Shane’s hearing levels were now profound in his left and severe to profound in his right. When we asked them what our next steps should be, they told us he was now a candidate for a cochlear implant if we chose to go that path. We filled out the cochlear implant candidate paperwork and started the process that day.
Cochlear Implant surgery and countdown to activation day
Shane got bilateral Cochlear™ Implants when he was 13 months old. The surgery was the longest six hours of our lives. We would get an update every hour or two and when the woman walked into the waiting room, Jim and I would be gripping each other’s hands, trying to read the woman’s face as she walked towards us. She would always lean in closely and say everything was going great, but it was nerve-wracking for us every single time. After surgery, in the recovery room, Shane was sleeping and groggy. He nursed right away and since he was able to keep it down, we were discharged around 4 p.m.
Sleeping was a little tough and we mostly held Shane that first night. The day after surgery, Shane was a little less wobbly and was all smiles. Two days post-surgery, Shane was running around like a maniac and was pretty much back to his normal self. The next few weeks before his activation day were filled with pilot caps to protect his ears, zip-up footless pajamas and antibiotics (as a precautionary measure). We were so anxious and counting down the days to November 1, our activation day!
Shane was 14 months old when he was activated. We were so excited for this day. It was not like the YouTube moments that we had seen, but it was still amazing. Shane was turning toward sound and seemed very happy. We were worried he would throw his processors off, or get upset, but he was happy and smiling the entire day; he loved wearing his processors. The best part of the day was when we got home and he heard his older brother, James. He smiled from ear to ear and that moment was priceless.
For our cochlear implant brand, we went with Cochlear. We did a ton of research on the major brands and were impressed with Cochlear’s long-standing reputation for having a superior product, amazing customer service and the sheer number of years they have been manufacturing cochlear implants. This, paired with the fact that a trusted friend, who we recently met during our journey and has worked with children with hearing loss for over 25 years, told us that if her grandchild was born deaf, she would choose Cochlear, hands down. That solidified our decision.
We did a ton of research on the major brands and were impressed with Cochlear’s long-standing reputation for having a superior product, amazing customer service and the sheer number of years they have been manufacturing cochlear implants.
We have had some very thrilling moments since activation. During the first month, Shane danced to music for the first time. After two months of being activated, we were so ecstatic to see Shane’s receptive and expressive language improve. He understood things such as ‘knock, knock, knock,’ ‘go brush your teeth,’ ‘go throw in the trash’ and tried to say words like ‘open,’ ‘up’ and ‘ball.’ We owe it all to the early intervention school we work with and, of course, his cochlear implants from Cochlear.
Favorite words Shane says
He has now been activated for four months, and our family is so excited each and every day because we cannot wait to see what word or phrase Shane will either repeat, learn or understand. Shane continues to enjoy wearing his processors at all waking hours. He will now come up to us or his older brother to tell us when his coil falls off. Our favorite words that he says are, ‘Mommy,’ ‘Daddy,’ ‘James’ and ‘love you.’ When we were told that Shane was profoundly deaf, we never dreamed he would be doing these things. Hearing my boys laugh, play together and listening to Shane try to say everything James says is one of the best parts of Shane’s hearing journey.
Shane loves swimming, and he wears his Aqua+* accessories during his weekly swim lessons. His favorite part of swimming is jumping off the ledge and going under water! Before he got his Cochlear Implants, he relied on watching and trying to copy what the instructor was doing, because he could not hear anything. Ever since he started wearing his Aqua+ accessories with his processors, I have seen his swimming skills really take off. He is able to listen to directions so much better. It is such a relief to know that Shane can have access to spoken language and be able to hear when he is swimming and around water in general.
The best advice I have received
When we first found out that Shane was deaf, we felt devastated. As a parent, you do not want your child’s life to be hard or to see them struggle, and we knew this would make his life harder. I reached out to some of the other moms I had met in my Facebook groups for children with hearing loss and some of the professionals that we had met along our journey. Some of the best advice I got was from them. The first piece of advice I got was that it is okay to not be okay! Be sad, and then rise up and fight for your child. You will be doing all you can for your child, and you will also be on your own personal journey. You are strong, brave and enough.
The second piece of advice I got was to not get so caught up in the diagnosis that you do not enjoy your sweet baby. All of your hard work will pay off, but take care of yourself, worry less and enjoy being a Mom and raising your baby in the early years. I was so thankful for this advice because as soon as I found out Shane had hearing loss, I researched every article, study and educational journal I could get my hands on about hearing loss, language acquisition and language deprivation. I could probably rattle off to you how many words/phrases a child with typical hearing would be able to say and understand based on his or her age. I literally was driving myself crazy. You will not be able to get that time back, and I was grateful that I got that advice when I did.
Shane’s deafness does not define him at all; all of the professionals we worked with all wanted the best for Shane and our family, and we could not be happier with all of the people we have been in contact with. We fondly call them our ‘Dream Team’ at home. We know with the support of our family, friends and dream team, Shane will live a life with no limits!”