One Family’s Journey:
Lifejacket in Place for
Mom of Three Boys
By Colleen Green AZHV parent
Her whole body became silent and she looked me straight in the eyes and said, “He failed.” I grinned like the Cheshire Cat and said something she might have never heard before: “See, was that so hard? We are ready for him to be Deaf. It is a blessing for us. Thank you for telling me the truth.”
Travis and I had only been married eight months when we found out Dalton was on his way - just enough time to get a family dog and move into our first home together. It was a relatively easy pregnancy and everything was right on schedule, including the nausea and ankle swelling toward the end. He was due on Christmas Eve, but due to doctor’s recommendation, I was induced a week earlier. Dalton was a healthy seven pounds, fourteen ounces and almost twenty-two inches long. Travis shed a tear when they gazed at each other for the first time and both of us couldn’t believe how perfect he was.
The next few days were spent in the hospital undergoing a battery of tests regarding Dalton’s health. He passed every single one – or so we thought. The newborn hearing screener told us, “The audiologist will come tomorrow to repeat the hearing test. The room was too loud, and he wasn’t all the way asleep so we have to do it again.” I should have known something was wrong at that moment because all Dalton had been doing since birth was sleeping soundly! He wouldn’t even wake to eat. We had to call his name, pat him on the head, and then finally resort to undressing him down to the diaper because the only thing that seemed to rouse him out of slumber was the cold hospital air against his skin.
Dalton at Norcal Camp Grizzly
Looking back I don’t think the screener was comfortable telling me that Dalton failed the initial screen. It was so much easier for her to not even mention that he failed, so much more convenient and comforting to say it that way. Better not to make any waves and worry the parents. We went another day of his life with the assumption that everything was perfect.
When the audiologist repeated the screen the next day, I could hear the clicks that were coming from the tiny earbuds securely seated in his canals and I saw that my son was not waking up in response to the sound. In my bliss I was able to ignore the reality of what was so clearly presenting itself to me. “We need Dalton to come back here in two weeks to repeat the test again. He didn’t pass the screening.” “Okay,” I said, “Why didn’t he pass?” I still wasn’t sure what she meant. “His brain didn’t respond to the sound as much as we like to see. It’s probably just water in his ears.” Again with the reassuring words, my son could still be perfect – he just hadn’t passed the test YET. It was like I had fallen off a cruise ship into a massive ocean and suddenly a life preserver appeared twenty feet in front of me. I lunged at it like Michael Phelps and let my whole being rest on a possibility that might not be reality.
Travis was not so optimistic. Dalton was home from the hospital for about a week when he announced, “I don’t think Dalton can hear us at all. I went into his room while he was sleeping and screamed pretty loud and he didn’t move.” I rolled my eyes at him, “Travis, that’s crazy! The audiologist SAID it’s probably water in his ears.” I wasn’t brave enough to “test” Dalton while he was asleep. My tests consisted of clapping my hands to the side of his head until he turned to look at my hands. Eventually, he would always turn his head. I kept a firm grip on that life preserver, but I wasn’t getting any closer to shore. .
At the follow up screening two and half weeks later, we heard that Dalton didn’t pass the screen again. The audiologist said, “Dalton needs to have a more intensive hearing test done with all of the different frequencies and decibels to see what is going on with him.” Maybe I was still on the life preserver and I didn’t hear her say, “Your son probably has a hearing loss.” Or maybe she never said those words. All I knew is that we needed more testing, which was likely expensive, and that we didn’t have insurance to cover the cost.
Letting go of the COBRA raft
My husband was in between jobs and my job didn’t offer health insurance, so we had been paying $650 a month for COBRA coverage during the pregnancy. Between the time Dalton came home and before the return visit to the hospital, I decided we should discontinue the outrageous cost of COBRA. Both the baby and I were healthy, so we could wait to get on another plan when Travis got another job. In my mind, nothing could be wrong with my son, and giving up the insurance secured my belief that everything was going to be just fine.
By a stroke of luck (or divine intervention), we immediately got connected with Dr. Barbara Cone, a professor at the University of Arizona who specializes in hearing research with newborns and infants. I only had to make one call to hear her chipper voice on the other end of the line, “Of course I can perform an in depth hearing test on Dalton and we can do it free of charge as part of our research.” Now I was being taken by the hand to a life raft, maybe one with a motor on the back, although I still wasn’t ready to see that this raft wasn’t going to take me to shore.
Dalton was one month old. After a solid hour of evaluation, Dr. Cone announced, “We did not see any responses from Dalton’s brain at any frequency or decibel. He has profound bilateral sensorineural hearing loss.” This was the first time I really heard and had to accept the truth about Dalton; my breath left my body and tears streamed down my cheeks uncontrollably. It felt as if the motor had broken down on that raft, a gaping hole open to the cold seawater pouring in. Now I was treading water. “Dalton will be okay,” Dr. Cone reassured us, “there are so many resources and support available to you.” I was so appreciative for her kind words although at that moment I was still in shock about his diagnosis. We left the building and every sound was amplified in my brain, the birds singing, church bells chiming, people laughing – all sounds my son didn’t even know existed. Then a semi-truck roared by, the diesel engine emitting an earth-shaking sonic boom. Well, he was lucky not to be able to hear that!
The months and years passed quickly, full of surgeries (including a cochlear implant, tonsils, ear tubes, and more), speech therapy, and an intensive pre-school program. It was a lot of work, but he was doing so well that we finally felt ready to have another child. Casimir James was born just over four years later. He passed his newborn hearing screening immediately. We had new waters to chart with a hearing child on our hands. Our third son, Brennen Andrew, arrived four days before Travis’ thirty-fifth birthday in the spring of 2010. My water broke around 10:30 PM the night before and we made our way to the hospital, ready for the birth. We were sent to the maternity triage, where I immediately asked for the bathroom. When I flushed the toilet and heard the supersonic whoosh, it was so loud my hands instinctively flew up to my ears to block it out. In the midst of all that activity, I noticed that the baby didn’t stir in response to a sound that hurt my ears.
Labor went on into the early afternoon and he was ready to appear. I’m still not sure why I picked that moment to announce to my husband, Mother, nurse, and any other medical professional that walked into the room, “Just to let you know this baby is Deaf. He didn’t move when I flushed the toilet and it was LOUD in there. I just need you to know – he is going to be okay, but he IS Deaf like Dalton.” Maybe I was trying to toss a life preserver to everyone, to let them know I was okay with him being Deaf, and maybe they didn’t need it but it sure felt good to know the truth before anyone from the medical field had a chance to break the news to me.
Third Baby Boy Makes Two
Brennen’s official newborn hearing screen was completed and the screener came into my room. It felt like deja-vu. “The audiologist will come tomorrow to repeat the hearing test. The room was too loud, and he wasn’t all the way asleep so we have to do it again.” Same exact words, same excuses, seven years apart. This time I threw the life preserver back at the screener. “Look.” I said to her calmly, “You can tell me he failed and that is why the audiologist needs to repeat the test tomorrow. I have already accepted that he is Deaf just like his older brother. I am ready to hear the truth. Please tell me, was the testing room really noisy, or did Brennen fail the test? ” Her whole body became silent and she looked me straight in the eyes and said, “He failed.” I grinned like the Cheshire Cat and said something she might have never heard before: “See, was that so hard? We are ready for him to be Deaf. It is a blessing for us. Thank you for telling me the truth.”
The same hospital audiologist from seven years ago arrived the next day and again he failed the screen. “We need you to come back in two weeks so we can repeat the test.” At this point I knew what needed to be done. “I will just schedule an appointment with Dr. Cone and bypass the repeat screen. I already know he is Deaf too. No worries, we will follow up – we know what to do.” At first she hesitated, but then she agreed with our plan of action.
I took Brennen to Dr. Cone at three months of age and he had the same audiogram as Dalton. This time, when she told me the news it was a completely different experience. There were no negative emotions, no tears, no shock, just happiness because my family felt perfect. For me, I had already been through the worst blow of my life with Dalton. Those first babies -- they are supposed to be absolutely perfect and we have such unrealistic expectations as new parents. After we saw how well Dalton did, and what a great kid he turned out to be, expanding our world to the Deaf community, learning another language, we knew we could handle another Deaf child. Since we learned he had Connexin 26, we knew and might have even hoped for another Deaf child. I wanted Dalton to have that connection to a Deaf sibling and to not be alone in his experience in our mostly “hearie” family. Or maybe grieving or being sad is something I internally chose not to do regardless of the "imperfections" any of my boys might have. Or maybe the seven years between the boys helped me forget the hard work and remember the many blessings.
A few months later Dalton bounded down the stairs, and with an energetic voice stated, “Mom, guess what!!!! I hear Brennen with my eyes.” My children offer me more long lasting life rafts than anyone else in the world ever could.
Editor’s note: Thank you to Pam Meadows, photographer, and NorCal Camp Grizzly for permission to reprint the picture of Dalton from the camp slide show.