After 24 hours of uncomplicated but long labor, we finally got to hold our baby boy. My husband looked at me and said "Thank you" while tears filled his eyes. Alex was so funny right out of the womb, his eyes wide and fully awake, trying so hard to make out what he was seeing. Being healthy parents we were so confident we would have a thriving, happy, perfect child. And that's what he was, and that's what he IS.
Alex failed the newborn hearing screening in the hospital twice. "No big deal" we thought, as we justified that he probably had fluid in his ears from the long journey out. So we brought baby home and started coping as new parents. I wish I could say the first month was easy but boy did Alex cry a lot. However, when he was one month old, it was almost like he was a brand new baby, content, sleeping well enough, and very observant.
Three months went by and his next hearing test was coming up. I remember thinking privately I knew Alex would not pass again. I never shared my feelings out loud though. Of course when we went again, the young girl performing the test received referrals for both ears and she even repeated the test twice on each ear. She tried to make excuses such as, maybe he is coming down with a cold, maybe the machine is not working properly but I always knew Alex could not hear well, if not at all. For one, he was never startled by the dog barking, awake or sleeping. The fire alarm had went off when the power was out one night and again...nothing. The next step would be to visit Chedoke Mcmaster Children's Hospital where he would go through a range of tests.
Our first visit was stressful. Alex was about 5 months old. We got Alex asleep in my arms while the audiologist commenced her routine of sticking on the electrodes and wires for the Auditory Brainstem Response (ABR), Electronystagmography (ENG), Otoacoustic Emissions (OAE) and an Audiogram. All throughout, my husband and I sat quietly while buzzing and beeping was going on in Al's ears and he was fast asleep. I remember looking at the audiologist and the expression on her face was not promising. It's funny how others try to control their thoughts and watch what they say for your benefit, but when something is wrong, it is always evident.
When we arrived home, I just remember feeling like I was mourning my child. We were bombarded with information, half of which went in and out of my head. All the precursors to AN were not present in our case. I did not have a complicated labour, there is no hearing loss in our families, he was not premature or in need of a blood transfusion so why? why did this happen to Alex? Researching information online was not comforting either, Alex would most likely never speak, would never comprehend spoken language or make out sounds. We would have to learn sign language (ASL). We have to alter our entire lives. Let's just say, for the next two weeks following the appointment, I stayed home hugging and squeezing my baby and apologizing to him even though he could not hear me. I felt so bad I could not deliver a "perfect" baby. I apologized to my husband and the emotions I went through were the worst I've felt in my life. This can't happen to us i remember thinking. Of course I do not feel this way now but the initial blow was hard. People would tell me "At least he is happy and healthy" and that would actually anger me because I felt he was not in full health and think, how dare these people tell me "at least" when there should be no "at least". I eventually got over my little tantrum and focused on solutions to our speed bump, running out right away to buy books about ASL for babies.
On our second visit to Chedoke we accepted the diagnosis however, the results came back a little differently. The audiologist corrected herself saying her first diagnosis was highly unlikely based on Al's health. This time Alex did not have sporadic responses to the ABR or anything else, there were simply no responses. Therefore, she assumed Alex would be placed in the severe to profound hearing loss category. We needed to be set up with Hotel Dieu Shaver in St. Catharines to get Alex into a sound proof room to determine the severity of his hearing loss.
One thing is for sure, when we needed help, resources or needed anything at all, people were there to help us. We quickly had a team of audiologists, a social worker, doctors and teachers to help us out.
To think of all the nights we left him alone in the dark in his room and he would wake up screaming and I tried to comfort him by singing or talking or whispering in his ears. It was not until later I read to give hearing impaired children a night light. Ever since, he loves his night light. If he wakes up he can look around find his pacifier or cuddle his stuffed animals.
The process to getting Alex cochlear implants turned out to be quick, professional and reassuring. The Hospital for Sick Children is truly a place where miracles happen. We were so fortunate to have Dr. Papsin (the surgeon and otolaryngologist) who is the inaugural chair of the Cochlear Americas Chair in Auditory Development at the University of Toronto perform the surgery on Alex. I don't know if Dr. Papsin will ever truly know the deepest appreciation we have for him because there are no words to the amount of respect we have for that man.
Alex received bilateral cochlear implants on September 13th, 2010. His recovery was fine and as we come to the present day, we are anticipating October 14th, 2010 which will be his first activation. Reading other blogs from parents going through similar situations was motivating and humbling. I realize Alex was not that "imperfect" baby I thought I had. He is very much perfect and in many ways beyond perfect. He has all his great qualities and on top of that his new ears! Watch out world!
If you have any questions or comments about the process we went through or any aspect of this journey, please do not hesitate to leave comments or communicate with me. My hotmail address is c_ath_y_h@hotmail.com
Thanks for reading
