Sevak's story is from a multicultural family sharing their experiences of raising a child with moderate-severe hearing levels and additional complex needs.
I was excited when I found out I was pregnant with my first child. Five months into my pregnancy the doctor told me that my baby was quite small according to gestational age. I was told my son would be born with some challenges but never did I imagine hearing loss would be one of them. Sevak was born at 37 weeks and weighed 4 pounds 9 ounces. He had a condition called Congenital Diaphragmatic Hernia (CDH). He spent 2 months in the NICU and a few days before we left a hearing test was done. He did not receive a “pass” and I was told many kids with CDH have some level of hearing loss. We were sent home and were booked for a sedated ABR a month later.
Sevak was 3 months old at the time of the ABR, when we learned he had moderate-severe hearing in both ears. I didn’t understand! The audiologist gave us many pamphlets and we left there feeling confused and thinking....now what?
I was eager to get started, so the minute I got home (before I told anyone) I got on the phone and started researching the program options available. When I told my family the news, they were in shock and they said things like, “Don’t worry he will slowly start hearing”, although I knew he wouldn’t. There were times in the beginning that I did question whether something could have been wrong with the machine, but I knew that wasn’t the case. As days went by I started to notice Sevak's lack of interest in sound. I made noises around the house and still there was no response from him. Reality started to set in and that’s when I really knew I needed to do whatever I could to make sure my child received all the support possible; both from the outside community and within our family. I found it helpful to me when I shared the Punjabi version of the book My Turn to Learn with my family.
I was so scared because no one in our family had hearing loss. We had never met a deaf or hard of hearing person, either. I had to start making decisions. After visiting the programs available for Sevak, I ended up choosing the program that felt best for my family. I was eager to join into a group program where I would have the chance to meet other families. I met so many other moms with babies with some sort of hearing loss....and I didn’t feel alone! Finally, when Sevak was 3 ? months old, he got his hearing aids. It brought tears to my eyes when I heard my 3 1/ 2 month old giggle out loud for the first time! That’s when I decided my son deserves to have the best life he can have, and that everything would be okay.
I use to think to myself, “how will I be able to keep the hearing aids on?”, “what if the batteries die?” or “what do I do if they get wrecked?”. The questions just kept building up! Thinking back I was so scared that I would do it wrong. Now I feel I'm such a pro at all this and it’s just a part of our lives. It was definitely not as hard as I thought it would be! It absolutely got easier as time went by.
Even with some additional challenges Sevak has because of CDH, he benefits tremendously from his hearing aids. Just before he turned 2 he was diagnosed with a retinal detachment so I felt we had another hurdle to overcome. His early years through his various group programs have been amazing for us and Sevak continues to thrive. Connecting with other families and attending the many fun activities available has been the best part of our journey so far.
With all the services and supports we have managed to give Sevak the best possible life we can give him. He is now in elementary school and continues to progress well. He is probably the most popular kid in the class, laughing and playing along with his peers! He has come a long way and is surprising us with all his abilities despite his challenges. We are so proud of our little boy!