By Courtney Aseltine
One of the questions I’m most commonly asked about Connor’s hearing loss is this: “How did you know? He’s so little.” And it’s an understandable question. Obviously a newborn baby can’t tell you that something’s wrong, and even if he could, he doesn’t know what the world is “supposed” to sound like. How could he tell you something isn’t right? When people ask me this question I always give praise to the newborn hearing screen. Just 25 years ago less than 3% of newborns were screened before leaving the hospital, as opposed to the nearly 98% screened today.
Connor’s first two weeks of life weren’t easy ones. He was born with bilateral pneumothoracies (holes in his lungs) and severely low platelets that left him in the NICU for two weeks. After 15 platelets transfusions, multiple IVIG infusions, and two surgeries, he was finally ready to come home. When he referred (a fancy term they use instead of “failed”) his newborn hearing screen the day of his discharge from the hospital, I didn’t know what to think. Initially I went into panic mode, thinking the worst (my natural reaction) but everyone assured me he would be fine. I was told it’s normal for newborns to refer, mostly due to fluid in their ears. We left the hospital with Connor that day, making a follow-up for him to be re-screened in a week. After failing his screen the second time, we returned the following day for more extensive testing. That was the day everything changed.
I could go on and on about the waves of emotion I felt that day, and in the days following. But instead I’ve decided to share with you the letter that I recently wrote to Connor on the day he turned 9 months old, because as you’ll see, so much has changed.
I still remember the day like it was yesterday. Daddy and I sat in the small, dark room, you on my lap, Daddy sitting anxiously next to us. “Don’t worry”, everyone told us. “It’ll be fine”, they said. But by the silence in the room and the look on the audiologist’s face, I knew something was wrong. The audiologist tested your left ear first. “He has a profound loss,” she said. She continued talking; something about testing the right ear, but I couldn’t hear the words coming out of her mouth. My little baby, only three weeks old, who had already endured more than one should in life, was deaf in his left ear. Tears filled my eyes while you slept innocently in my lap and the testing continued. “Good news,” she told us. “He has some hearing in this ear.” Some? Why not all? How is this good news? These thoughts and so many more filled my head. I tried to fight back the tears, but they came on full-force. So many questions ran through my mind as the life I had imagined for you slowly faded away. I tried to hear what the audiologist was saying. There was talk of hearing aids, cochlear implants, early intervention, and FM systems, but all I could think about was if my baby would ever be able to hear my voice. I remember leaving the hospital that day and crying the whole way home. If only I knew then what I know now. Of course I would have been sad, but I also would have been filled with an incredible amount of hope. So often we look at a disability and see what someone is not able to do, but it isn’t often that we focus on the opposite. Everyday you inspire me. You wake up with a smile on your face and you are so in awe of the world around you. You work so hard, and at 9 months old you are right on track with your peers. You have found your voice and you certainly found what remains of your hearing. I do know that journey that we’re on won’t always be easy, but I also know that it will always be filled with love and support. You have brought so many wonderful people into our lives, and we thank you for that. So while I can’t sit here and say I never feel sad, I will say that I honestly wouldn’t change a thing. And as for that life I saw fading away? It’s back and brighter than ever. Shine on. You are amazing.
In the beginning I was convinced that Connor’s hearing loss was caused by his stay in the NICU, but now I realize I just wanted someone to blame. Like if I knew someone else caused it, it would make it better. But that’s not the case. It turns out Connor has something called EVA (enlarged vestibular aqueducts). There’s lots I could tell you about EVA, but here’s what matters: it’s progressive. That means there’s a chance that Connor will lose the rest of his hearing, and it could happen any day. He could wake up hearing and it could be gone within hours. I try not to think about it and focus on helping him hear as much as he can, while he still can. He has wonderful therapists and we’ve found amazing support at a local program for Deaf/HH kids. Like I said in my letter, I’m not going to pretend I don’t ever feel sad. When I’m giving him a bath and I try talking to him, but he doesn’t even look because his aids are out. When I’m driving in the car and I’m singing to him, but he can’t hear me (no aids in the car, he tries to eat them). Or at night when he wakes up crying and I’m trying to comfort him, but I’m not sure he even hears what I’m saying. These are the moments I feel sad. But that’s all that they are. Moments. Small little pieces of a much larger, amazing life, one that I would never change.