Tuesday, October 16

The Days Leading to Diagnosis

Drew failed his newborn hearing screening on September 26, 2006, just two days after he was born. Many of Drew's first days and nights are such a blur, with the sleep deprivation and all. But I knew in my heart very early on that something was not right. Why would he not pass his screening? How could he possibly not hear? We have no history of hearing loss in our families. This can not be happening.

I can remember that Drew's Dad was not overly concerned about the failed results. The audiologist had given him some encouraging words like, "many babies who do not pass their screening have normal hearing." I did not find comfort in those words. I was worried from the moment Drew's Dad told me he did not pass. I had been showering when the audiologist came in to explain Drew's test results so I never had the opportunity to ask any questions. All we were given was a list of places that do diagnostic ABR's for infants and told to schedule a follow up test.

In my heart I knew he couldn't hear. Why hadn't Drew calmed to the voice of his Daddy right after birth? He was crying at the top of his lungs with his Daddy talking to him and he continued to cry. When my daughter was born, Daddy's voice instantly stopped the crying and she turned to look in his eyes for the first time. Why hadn't the squeaky door in my hospital room woken him as nurses and family members came and went? He never startled. Never woke to a loud sound. I knew something was wrong.

We took Drew home on the same beautiful September day as his hearing screening. I can remember my Mom bringing Drew's Sister home (she had stayed with Gamma and Pa Pa while we were in the hospital). I told my Mom that Drew had not passed his hearing screening and she was just as confused and worried as I was. I pulled out the audiologist report from the hospital. It was so confusing to me and I had no idea how to read it. I began calling the list of places we were provided to do the follow up testing. Many of the places on the list did not do diagnostic ABR's on infants, and those that did were booked until December. I called places for over an hour. When they would tell me they could not get Drew in until December I would cry. I would try to mask my sadness and fears while finishing the conversation, "Well, thank you for checking, but I'm not going to wait until December. I'll try somewhere else." Finally, the receptionist at Columbus Speech and Hearing took pity on me when she could hear me crying through the phone and scheduled him for early November.

Drew had jaundice as a newborn, so we spent many days at the pediatricians office getting his belirubin tested. At his first appointment, two days after we left the hospital, I asked his doctor about the failed hearing screening. His responses left me with little hope: "Well, I've never had a baby fail his newborn screening." Never, seriously? You've been in practice for over 30 years and have never had an infant fail the test? Then he continues, "I don't know exactly how to read these tests, but even if he is deaf, there are these things called cochlear implants so he won't get hit by a car if he is playing in the street." I was standing at the time he was telling me this, but I had to sit. The gravity of the situation was too overwhelming and I sobbed. The kind of sobbing that is uncontrollable. There I sat in his office, completely inconsolable. It was awful. He nor Drew's Dad knew what to do. Once I pulled it together I was able to say, "Well, can you at least call around and try to get a follow up test sooner than the first week of November?" He obliged, and called later that day to tell me Drew would be seen by an ENT on October 4th.

I cried a lot after that. As I would nurse both of my babies I would sing and talk to them. Despite all of the visitors and chaos of having a new baby, there were always those moments of breastfeeding that were just me and my little baby. I loved those times with both of my babies. But there was always a fear when feeding Drew: What if he could not hear me singing? What if he couldn't hear me telling him how much I loved him? I would cry. Every time I would feed him I would cry. It actually became a bit comical to my Mom and Sister who spent many of the first days of Drew's life helping me at home. They would bring the Kleenex as I would start to feed Drew, knowing the tears would follow.

I can remember one night in particular, about four days after Drew came home from the hospital. Drew was asleep in his pack in play in the corner of our living room, my Mom was cooking dinner and Drew's Dad had just gotten home from work. Drew's sister was running around the living room playing with her toys, in particular her popper. She was going every where with that thing and making a ton of noise. I kept telling her not to pop it by Drew, but she did anyway. He never startled, never woke. I sat on the couch watching her play and cried.

I actually get teary eyed just thinking about the things I went through this time last year. It was such an emotionally draining and physically exhausting time. I feel cheated because I never got time to have any worry free moments with Drew. I spent a lot of my time on the phone scheduling appointments or on the Internet researching hearing screening and interventions for children with hearing loss instead of resting and spending time with my new little boy. I'm sure that many parents who have been through this journey like me have many of the same feelings.

I could not sleep at all on October 3rd. I was worried about what the coming day would bring and if I would be strong enough to hear what the ENT had to say. Drew's appointment was not until late in the day so I had to sit around all day waiting for it to come. My Mom drove Drew and I to the appointment. She was insistent on doing so, mainly because she and my Dad wanted to make sure that I wasn't alone if Drew was diagnosed with hearing loss.

The ENT's office was cold and sparse. I was uncomfortable from the moment we walked through the doors. My stomach was uneasy and I was having a hard time keeping myself from nervously shaking. The ENT walked in the room. He was middle aged, unfriendly and had something funny on his head. He asked a few questions and then looked in Drew's ears. It took all of a couple of seconds to find fluid in both of Drew's ears. I looked at him sternly and said, "Do you think that is why he failed his hearing screening?" The ENT said, "Yes. I will see him back in three weeks. Hopefully the fluid will have cleared and we will retest him then."

Drew can hear, I kept telling myself. I was in a way relived, but still uneasy. I kept telling myself that everything would be O.K. but deep down I still thought that something was wrong. I scheduled a follow up appointment for October 26th.


Mom to Toes said...

Beautiful. You know I can relate to everything you just wrote.

Yet, we each have our own story to tell. And it is one that is so important to tell.

I look forward to reading more.

Mom to Toes said...

Wow. I don't think I ever realized that Drew failed his screening the day after Toes and Isaac received their first implants.

Anonymous said...

I'm also really enjoying reading this...brings back some tough memories for sure, but look how far we've all come!

Christina said...

I went through the exact same situation AND emotions with my son, Christian. I remember crying when I was nursing him too. I still cry everyday. He's 8.5 months old now, and we just now got the diagnosis that he has severe-profound in both of his ears.

I look forward to reading more about your amazing son...stop and see me at

Drew's Mom said...


Thanks for stopping by. I tried to go to your blog, but that address is for someone named Ashley and has no posts. What am I doing wrong?

Drew's Mom

Christian's Mommy said...

I can't believe I typed the name of my blog's

Steph said...

I could be writing the words of your backflash to fall 2006 myself right now. I knew something was wrong before the newborn screening and even after the nurses assured us it was probably just fluid and again the next day when they repeated the OAE and then gave the ABR. It kills me to know he can't hear me tell him I love him, can't hear my voice telling him I'm right there when he cries from bed, to know he just sees moving lips when he really needs to be lulled back to sleep.

While nursing him and crying, I'm typing this with one hand from the hospital, where we'll stay for a few days so that the ultrasounds and blood tests can be done in 'one fell

I hope that in one year from now, my then one year and five week-old son will have his ears turned on, too!