My Name is Melanie Dromarsky! I live in Calgary, Alberta, Canada with my husband Tim, 4 year old daughter Lillyana and our 11 month old son Emmett.
Emmett was born in March 2019. At that time our province had only been doing newborn screening for about 2 months. We did not have a screening done with our daughter and she has normal hearing. So this was all new to us. We had a midwife delivery so we were referred to an outpatient clinic for the screening when Emmett was only 9 days old. It was my first day alone with both kids so I was already feeling a bit overwhelmed. The result came back “refer” which I had no idea what it meant. I remember the technician was having a hard time administering the test so I didn’t think anything of it. The technician just said she wasn’t able to get a hold test and that there are a lot of reasons for a refer result but it didn’t necessarily mean anything. We were asked to come back for an ABR( Auditory Brainstem response) test to find out what was causing the refer result. I remember calling my husband and then just breaking down. I was so scared.
The first ABR was so hard. Emmett wouldn’t sleep for long and startled awake really easily. When the test was done, the audiologist just said she was unable to get any response to sound even at really loud decibels. She asked us to come back for another ABR in 2 weeks to confirm the results. I was so confused. What did that even mean? Like how is it possible that he can’t hear anything? We went back for our second ABR and the results were confirmed. Our son had Profound Sensorineural Hearing loss bilaterally. My husband and I were devastated. The audiologist just looked at us both and she was so cold and just told us this was something that would never go away, there was no fix for it, no surgery to help.
We were referred to the local Children’s Hospital for follow up. During the 5 weeks we waited for our appointment I started trying to learn as much sign language as possible, I cried a lot, and did a lot of research. I had stumbled upon Christy’s story about Charly and it immediately gave me hope. I complied a list of questions to ask at our appointment, the main one being about Cochlear Implants. I so wish in that moment when we received Emmett’s diagnosis that the audiologist would have given us some hope.
I remember just sobbing while I rocked my baby boy wondering if he would ever be able to hear me tell him I love him. Would I ever hear his little voice call me mama? I found it so hard when he would cry. I would want to sing lullabies to him but then I would stop and say “what’s the point? He can’t hear me.” A Close friend encouraged me to keep singing because even if he couldn’t hear me, he could feel it. It was in that moment that I new I just had to treat him as if he could hear. We didn’t want our daughter to treat him differently, so we couldn’t either.
Our appointment came and we were given the choice to go the listening and speaking route or the signing route. For our family, with absolutely no history of hearing loss, we wanted our baby boy to hear. We looked at his hearing loss as an obstacle to overcome, but we did not want it to hinder him from achieving his full potential. At this appointment we were given so much hope when we found out about Cochlear Implants.
At 8 weeks old, Emmett was fitted with his very first hearing aids. They were so tiny and I remember he would just smile and giggle every time we put them on. Our audiologists were not sure if he would get any sound from the hearing aids but in order to qualify for the Cochlear Implants we needed to go through a hearing aid trial. At this point, going from thinking my baby would never hear my voice, to the possibility of him being able to do so much more, We were willing to try anything.
Fast forward 9 months and many many appointments later, our sweet little boy is scheduled to receive his implants on April 6, 2020. I am nervous but filled with so much hope and excitement. Seeing the success stories of children with Cochlear Implants has taken a diagnosis that was so devastating into something that has so much potential to make a difference.
Seeking out other families who have similar experiences, and people with older children with implants has been such a turning point in our journey. Knowing that the sky’s the limit is unbelievable. We will always raise Emmett to believe that he can do anything and that even though his hearing loss is a part of who he is, it does not define him.
My best advice is to enjoy every minute of your baby. There is hope through technology to give your child access to a full world of sound and unlock their full potential. Find the success stories. The stories of hope. Know that you are not alone and be encouraged. When your child hears your voice for the first time, and the moment they say their first word, it will all be worth it!
