Before we left the hospital in July, Bear failed the basic newborn hearing screen twice. Our doctor wasn’t concerned and said it was likely due to the remaining amniotic fluid behind his ear drums since he was born via c-section, but advised us to repeat the test a couple weeks later once we’d given his ears a chance to clear up. We did, but he failed again. The first three screenings were pass/fail tests. There was no diagnostic portion to it, so it was impossible to know why Bear kept failing.
Several weeks went by and Niko and I didn’t think much of the failed tests, chalking it up to what I started calling “my extra fluid”, a term I coined after hearing the surgeon’s commentary in the operating room about the large amount of amniotic fluid they found during my c-section. We figured if I had an abnormal amount of amniotic fluid, then maybe he had an abnormal amount of fluid in his ears (totally not based in medical facts, by the way). Plus, there were multiple instances where it was obvious to me Bear could hear. You know, those nights when you’ve spent 30 minutes rocking your newborn baby to sleep and are inches from setting him down in his crib just as your wife drops a towel ring on the hardwood floor… sorry honey 🙂
With the doctors recommendations we decided to do more testing, wanting to remove any potential doubt. So, in September we met with Michelle, an audiologist at Dell Children’s Hospital. We did an exam called an Auditory Brain-stem Response, or ABR, to see if the nerves in his brain responsible for processing sound were working. It was a lengthy test that required him to be asleep and hooked up to all sorts of wires and sensors. We got the results that very day- Bear was diagnosed with Bilateral Moderate Sensorineural hearing loss.
Niko and I were shocked. I don’t think we were prepared for any other outcome than “Well, looks like everything has cleared up. He hears perfectly!” We genuinely had not even imagined any other result. Of course we were saddened and disappointed, but at the same time we walked out of that room with an enormous amount of peace. We hadn’t even made it to the parking lot and Niko looked at me, smiled, and said “God is going to heal him. This will be a really cool story.”
ABR test results are displayed on a graph, blocked out in sections titled “Mild, Moderate, Severe and Profound (Deaf)” to indicate the level of hearing loss. Bear’s hearing loss fell kind of the in the middle. He can hear loud things like a lawn mower or airplane overhead, but struggles to hear speech or running water, for example. Over the next couple days and weeks we shared the news with our close family and friends asking for prayers to process all of this, but most of all, for Bear’s healing. The doctors couldn’t explain his hearing loss, this kind develops in the womb. There’s no history of hearing loss on either side of our families, I had a pretty average pregnancy, and he had no complications after his birth (sometimes heart problems detected in a newborn exam are associated with hearing loss). We were all stumped.
After the diagnosis, Michelle immediately began talking about our options. First step, amplification- or hearing aids. Because his hearing loss specifically affects his ability to hear speech it was crucial for us to begin the process of ordering hearing aids so he won’t be developmentally delayed. Hearing aids are ordered and fitted through an Ear, Nose and Throat (ENT) doctor. We met with a couple of them before settling on a pediatric ENT back at Dell Children’s. As the next few months passed we continually prayed that every next test we had would have a different outcome, that somehow the results would show perfect hearing. We prayed specifically for our next ABR scheduled in December 2015- that was the big one. We had two or three more appointments in this time and Bear kept failing. But we held out hope, after all we had been praying for the December ABR by name.
On December 21, 2015 Bear went in for his final ABR. Since he was now 5 months old and much more alert, he was put under general anesthesia. We also decided to have a CT done of his head the same day to rule out any structural issues with his auditory canal. The whole procedure took about 4 hours and I’m sure it was much more traumatic for me than for him- all of his doctors said he did great and was a total champ. As soon as our beeper went off to meet him in recovery, Michelle grabbed us from the waiting room and took us to a consultation room. We held our breath knowing that this was the moment we’d waited for since Bear was born. She’d barely pulled out the results and turned the paper around for us to see when my heart sank. By this time, we’re familiar with these graphs and it was clear that his results were not better, in fact they were worse. His right ear required 10-15 more decibels of amplification to get a response from the nerves in his brain. She cautioned that we could be dealing with progressive hearing loss, meaning that as he gets older his hearing could get worse. I don’t know if I heard much more of what she said, I just wanted to be with Bear. We went back to recovery and held him and told him how proud of him we were. I cried. We didn’t talk much about the results until we got home, I think we both still hadn’t processed it.
So,what now? What do you do when God doesn’t answer your prayer? I for one foolishly felt like, “Come on, God. We basically had this set up for you… all this time asking you to heal him by this specific date, that would have been such a miracle story! You really messed this one up.” Or more desperately, “Why? Why didn’t you heal him?” We are still wrestling with these questions and definitely do not have a really deep theological statement to make about it. We still don’t know.
But THIS is what I do know.
I know that God knit Bear together just how He wants him (Psalm 139: 13-16)
I know that God is working everything for Bear’s good (Romans 8:28)
I know He is faithful to those who love and follow Him (Deuteronomy 7:9)
I know He will provide for our family and the unexpected medical expenses (Matthew 6:31-32)
I know His plan for Bear is far better than what I could hope for (Jeremiah 29:11)
HE is writing Bear’s story, and we are so thankful to be a part of it! It’s impossible to know if the doctors’ prediction of progressive hearing loss will come true but we still have that enormous amount of peace. 2016 will be a year of trials we didn’t see coming, like learning and teaching sign language, Niko and I doing genetic testing and more investigation into the cause of Bear’s hearing loss. In January he will be fitted with his first pair of hearing aids and we are anxiously awaiting that moment! We invite you to continually pray with us for Bear’s complete healing. We thank God for our smiley, chunky and otherwise healthy little boy. We thank Him for wonderful doctors and big scientific advances in the world of audiology. We are so grateful for health care and the opportunity for Bear to hear his best. Thank you to all of our family and friends who have been walking this road with us. We have felt your prayers and cannot adequately express our appreciation for your love and support.