“I was living my picture-perfect life. I was married to my high school sweetheart, we had a beautiful 2-year-old daughter, I had a job I loved, and we were saving to buy our first home. I had no idea the turn my life would take and where it would lead me in a matter of months. It all started when we decided it was the ideal time to add one more baby to complete our family. To my surprise, it took us no time at all to get pregnant. My husband had just started a new job, so I went to confirm the pregnancy at my OBGYN alone. Little did I know they would do an ultrasound the same day.
I will never forget the shock I felt when the ultrasound showed two embryos, not one. Twins? How could I be having twins? This was not part of my plan! Once the initial shock wore off, we were so excited to think we would soon be a family of five. We soon discovered twins brought with them more challenges than we had anticipated. We now needed a larger car, a bigger house, two of everything, and the cost of childcare for three was more than my paycheck would allow. Pregnancy made our planning more difficult, as I was high risk and needed to take precautions. The many things I needed to accomplish before the babies arrived were cut short when I was put on bed rest at only 30 weeks.
Baby A, as they called him, wasn’t growing as fast as his sister, which concerned my doctors. This caused me to have to quit my job months earlier than we had planned. Being on bed rest when there was still so much to get done was extremely difficult, but my babies’ health was my number one priority. At 37 weeks, with Baby A’s growth still not improving, the doctors decided it would be best to deliver the babies. My c-section was scheduled for Friday, March 27, 2020. COVID-19 restrictions had recently been put in place and prevented visitors. Thankfully, my husband was allowed to in the operating room to witness the birth of our twins.
Millie and Mason were born one minute apart, with Mason coming out over a pound smaller. Both babies were healthy and required no NICU time. The only concern at all during our short stay was Mason failing both of his newborn hearing screens. We were assured it was just fluid from the c-section and told to follow up with an audiologist later. We didn’t think much of it and went home to introduce our babies to their big sister. She instantly fell in love with them and we began our lives as a family of five! Our immediate family gradually met them over the next few months, as we took precautions to ensure they stayed healthy. We were busy soaking up newborn cuddles, while the world outside was chaotic from dealing with stress caused by the newly-emerging pandemic.
After a couple of months of waiting for our audiologist appointment, we finally got in to see them. We were expecting a quick visit to confirm it was just fluid (as we had previously been told). Unfortunately, this was not the case. We were shocked to find out he failed again! Surely it was still fluid, right? This is when I first started to get concerned. We had a follow-up ABR test a few weeks after, which I was very anxious about. This test measures his brainwaves and their reaction to sound. In order for this test to have an accurate result, he had to either be perfectly still or sedated.
I made sure not to feed him beforehand and attempted to keep him awake so he would remain still and the test would be successful. I felt as if all my preparations would help the outcome. He cooperated well for the test, but I could tell something was not right. The audiologist kept running the same tests over and over. My worst fears were then confirmed. He did indeed have sensorineural, severe to profound, bilateral hearing loss, meaning he was completely deaf in both ears. My world stopped and all I could do was sob. Devastated doesn’t even begin to describe the feeling. I was mourning this great life I had planned for my son. All my hopes and dreams for him to be successful were ruined. I had no clue about hearing loss and had never even met a deaf person.
I left the appointment in shambles. I felt so bad for my baby and like it was somehow my fault. My way of coping was to stay busy, so I went straight to work. I researched the reasons he could have hearing loss. Would we need to learn sign language? Could other things be affected by this? Could it be fixed or reversed? I read anything and everything hearing-loss related. After countless hours of research, I learned so much it was overwhelming. The more I researched, the better I felt. My husband and I would share the findings each night of our individual research.
I then realized Mason was not alone, and neither was I. I’ve come into contact with so many amazing hard of hearing (HOH) parents and kids. Hearing stories of other deaf kids accomplishing goals and thriving was amazing. This was the first time I felt like it was going to be okay. I had no idea of medical advances available, but I soon learned about Cochlear implants. Cochlear implants are devices implanted in the head that provide deaf people access to sound, which they would otherwise not be able to get from hearing aids. I was so intrigued by this amazing device and instantly knew it was what I wanted for my son. Sure, I could teach him sign language and communicate with him, but I wanted him to HEAR.
I wanted Mason to hear waves crashing on the shore, crickets chirping at night, the giggles of his sisters, but most of all, my voice telling him how very much I love him. While this idea was in my head, I still held onto hope that maybe hearing aids would be beneficial enough for him. We quickly began searching for answers as to why Mason was deaf. It was especially concerning him being a twin because we weren’t sure if his sister would end up losing her hearing later on. We began with genetic testing, an MRI, and a test for congenital CMV. The genetic testing came back normal, which was great news! The MRI showed no abnormalities with the formation of his ears and cochlea, which also meant he was a candidate for Cochlear implants. The congenital CMV test came back positive for Mason, but negative for his sister Millie, which was such a blessing.
Congenital CMV is a cold-like virus pregnant women contract that can infect the fetus. It’s harmless to us, but can cause some serious issues in unborn babies and even be fatal. Luckily, Mason’s only symptom was deafness, but we won’t truly know all of the effects until he’s older. I was so thankful to finally have answers. During this time, we also did more hearing tests and a hearing aid trial, which continued to confirm what we already knew. Mason was profoundly deaf, and hearing aids didn’t give him enough access to sound. He was able to hear a little bit with the help of hearing aids, and we noticed a pretty immediate change in his temperament. He went from being a pretty fussy baby to a happy, smiley one, and even started vocalizing more. I guess a silent world is pretty boring!
Seeing how much Mason loved to hear helped with our choice to proceed with Cochlear implants. We began to get serious about them and met with our amazing surgeon, Dr. Alfonso. She explained the procedure to us in detail and said he could get them as early as 9 months old. Mason was about 4 months old at this point, and after all my research, I knew the tremendous difference early implantation could have. While 9 months is still considered early, I knew the benefits a few months earlier would be. I voiced my concerns to our ENT, who agreed and said insurance typically doesn’t approve, but she was willing to give it a shot! We picked a surgery date of October 23, 2020, and prayed insurance would agree! After weeks of waiting, we finally got word insurance accepted. All the emotions came flooding in; fear, excitement, joy, doubt, anxiety. It was REAL now.
We proceeded to meet with our audiologist to work out the details and pick a brand of implants. We were able to actually touch all of the equipment and see the devices which would be implanted in his head. All of the companies seemed great, but there was one that kept sticking out to us: Cochlear Americas. We anxiously waited for surgery day and it finally arrived. We sent our 7-month-old baby off to the OR where he easily won over the hearts of all the nurses. The amazing Children’s Healthcare of Atlanta nurses updated us every hour with how everything was progressing, and they were so accommodating while we waited. After more than 4 agonizing hours of waiting, he was finally back in our arms! Everything went smoothly! I am thankful Dr. Alfonso was willing to perform the implant surgery on Mason at such a young age. He was her youngest Cochlear implant recipient!
We went to his recovery room where they wheeled him in shortly after. I was so glad to see him and just stared at his sweet little swollen face. After one night in the hospital, we went home where he recovered very quickly and was back to his normal, happy self in about a day. Now, the dreaded wait until activation. They have to wait a few weeks to turn the implants on to give him time to heal. Not only did we have to wait three weeks, but Mason couldn’t wear his hearing aids during this time, which was tough, since he was hearing something with those. He wasn’t as happy as before and slowly stopped vocalizing as much. Finally, the day came and he was, of course, overwhelmed with hearing clearly for the first time.
Despite this, he did amazing and has progressed so well! They gradually turn them up to give his brain a chance to adjust to hearing all these new sounds. It’s been a little over a month now and he’s reacting well to sound, vocalizing more every day, and improvements in therapy. I hope to advocate for Mason and help spread knowledge about deafness and Cochlear implants. I had no idea about any of this 8 months ago! Thankfully, we’ve only had good experiences so far with people being curious about his implants. I feel like people are so hesitant, worried they will offend me asking questions, but I love the chance to educate others anytime I can. I know kids will ask questions one day, and I hope Mason confidently responds, telling them about his ‘super ears!’ I wish people truly understood how amazing these little devices are! Our family and friends have been so supportive through this entire journey and we would not be where we are today without them.
While Mason’s story has already been a long one in just 8 months, it’s only the beginning. Cochlear implants seem magical, but they actually take a lot of effort. We do weekly auditory-verbal therapy, speech therapy, and frequent check-ins with the audiologist and ENT. Mason will need years of different therapies to train his brain to hear and catch up with his peers. Everything that comes naturally for us, he will have to work for. One day, all of this will pay off, as he should be able to go to mainstream school with little to no extra help and have normal speech, but he will still face many challenges.
To anyone in a similar situation, know it will be okay! Do your research, trust your gut, and you will do what’s best for your baby. Find your village—family, friends, doctors, audiologist. I couldn’t have done it without our amazing team of people to support us and love our Mason. I am so glad we made the decision to get Mason Cochlear implants. I hope one day he appreciates the gift implants have given him and all the hard work we did to get him there. Looking back at how I felt the day we found out Mason was deaf, I wish I knew what I know now.
Although this journey has not been the easiest, we’ve grown from it and learned to let go of what we cannot control. I’m still a planner, but plans change, and sometimes even turn out better than if things had gone our way. I’m grateful for all I have learned through this experience. It has taught me to never take the little things for granted… like sound! As for Mason, all those dreams I had for him may look a little different now, but he has the power to accomplish anything he puts his mind to! The challenges he may face will only make him stronger and more determined. We will forever be grateful to Cochlear implants for giving my baby the gift of SOUND.”
This story was submitted to Love What Matters by Brooke Barnes of Bremen, Georgia. You can follow her journey on Instagram and TikTok. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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