Amanda C. felt unconditional joy and love when her son Jackson was born, but she noticed something looked different with one of his ears. When she realized he had microtia and atresia, she struggled with the right solution for Jackson, eager to give him full access to sound. After a blur of doctor appointments, they were introduced to the Cochlear™ Baha® 5 Sound Processor on the Baha Softband as his first step to better hearing. Read about how Jackson is helping his mom appreciate the beauty of the sounds around herself and their whole family:
“No one can explain how it feels to become a mother. It is emotional, empowering and exhausting. No matter how that baby arrives in your arms, it is an unconditional love that is so different from any other love in your heart. It truly feels like magic when you realize the role you had in creating that tiny, perfect human being.
Naturally, moments after my sweet baby boy was born, I began proudly looking over every inch of his precious face and fingers. I noticed how he had a dimple, just like his big sister. I noticed his sweet lips were just like his daddy’s. His fingers were long, like mine. He had beautiful eyes and the most kissable cheeks. Then, I noticed that Jackson was special. One of his ears did not look like a ‘normal’ ear; it seemed so tiny compared to his other ear, and it did not have an ear canal.
I cannot put into words the feelings I felt at that moment. Of course, we began to worry what this would mean about his hearing, the types of surgeries he would need, how we would tell our family and friends and what might have caused this. We spent a lot of time awake that evening on the internet researching ‘little ears’ and learned that Jackson had microtia and atresia.
Our first few weeks home were a complete blur between the lack of sleep from having a newborn and the tremendous amount of appointments recommended to us. Jackson’s little ear also meant there was a chance he would have hemifacial microsomia.
In addition to meeting with his pediatrician, an ear, nose and throat doctor (ENT) and audiologists, we also met with a craniofacial plastic surgeon. When I heard an official diagnosis from the doctor, I finally lost all control of my emotions. Maybe it was the hormones, or the lack of sleep…maybe it was realization that this would be a lifelong journey for all of us.
Opportunities for full access to sound
Jackson has right ear microtia and atresia and mild hemifacial microsomia. He has normal hearing in his left ear. His right ear has a closed canal, which causes him to have a conductive hearing loss.
We had not pursued any imaging, but we believed that his inner ear was developed. Recommendations were divided on whether or not he would need some type of hearing aid to support his language acquisition and if we should consider surgery to open his ear canal. We decided to give him the best possible chance for normal speech and language development by trying something to aid his hearing. Our audiologist shared information on the Cochlear Baha 5 System with us, and we fell in love with the opportunities it would give him to access sound as an infant, toddler, and as a child entering school and beyond.
We met with our audiologist for a loaner Baha 5 Sound Processor when Jackson was 7 months old. The moment we put the Baha 5 on the Baha Softband on him, it was magical. It was just like those videos people share on social media that make you cry all sorts of happy tears. He smiled and looked at me as I softly spoke and said his name. My heart melted and that moment validated any questions we had about whether or not we were doing the right thing.
Jackson was welcomed home after his appointment with two loving big sisters who wore ‘homemade Softbands’ out of elastic and buttons to support their little brother (pictured right). They did not want him to feel different, and they wished they could have one to be just like him. Our little guy wore his Baha 5 on the Softband without any hesitation for months. We believe that this helped him to acquire so many of the words he is speaking now.
Happy thriving boy
Fast forward to now, and we now have a happy, thriving 2-year-old boy. He speaks in phrases and sentences, plays pretend with his sisters, makes playful sounds, zooms trucks around the floor and talks on the phone to family. Being that Jackson is 2, keeping a ‘headband’ on a strong-willed toddler can sometimes be a struggle. We let him take breaks as he needs them, but he is finally back to keeping his Baha 5 System on more regularly. Little moments where he pauses to say, ‘I hear that,’ remind me of the joys of beautiful sounds like birds chirping, the rustling of branches on a windy day and children laughing on the playground. Without his Baha, these are the types of sounds he may not hear.
We know that as he enters a noisy school environment in a few years, the Baha 5 System with the Cochlear™ True Wireless™ Mini Microphone 2+ will really help him to hear his teachers. We have not needed the Mini Mic regularly right now, as we are typically not too far away from him, but we love that we have an option to speak to him through the Mini Mic as he grows older and our proximity to him will not always be so close. We love that the Baha 5 Smart App* lets us keep track of how often he is wearing his Baha 5 Sound Processor and we can speak to him through our iPhone®. We can even use it to track his device if it ever gets lost.
We are still at the beginning of Jackson’s hearing journey, and we will let Jackson decide about reconstruction and implantation** as he gets older. We are so thankful for all the amazing people who have helped guide us along the way and for Cochlear for giving our son access to sounds he would otherwise never be able to hear or localize.”
Does your child have microtia and atresia like Jackson? Are you eager to find a solution to give them access to sound? Learn more today at IWantYouToHear.com.
* The Cochlear Baha 5 Smart App works together with all Cochlear Baha 5 sound processors. It is verified on iPhone, iPad and iPod touch running iOS 9.1 and Samsung Galaxy S6 and S7 running Android OS 5.0 Lollipop. For more detailed device compatibility see the Baha 5 Smart App description on App Store or Google Play.
** In the United States and Canada, the Baha Implant is indicated for children ages 5 and older.
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