By: Simrit Judge
My name is Simrit Judge and my son Sevak is 10 years old. Sevak was born hard of hearing with additional needs. Throughout my pregnancy in Edmonton, we were unaware of any complications. Doctors did tell us that he was on the smaller side but within the 10th percentile so he just needed to be monitored. Later, when I was 34 weeks pregnant, we moved to Surrey, British Columbia. I moved here one month ahead of my husband in order for us live with my parents and settle into our new home. We knew we would have wonderful grandparent support since my mom was a stay at home mom.
After my first routine ultrasound here I was immediately referred to BC Women’s Hospital (BCWH), where they gave me a more detailed ultrasound and then recommended an amniocentesis. I was confused because this whole time I thought everything was fine, and now I was dealing with this while my husband was still in Alberta. He was able to travel here and join me right away, and we met with a team of doctors who told us that Sevak was not getting enough oxygen and we should look into inducing his birth. I even remember a doctor mentioning something like “you’re too far along for an abortion but there are places down south where you can go.” I was so scared, and I didn’t know what we were dealing with! My husband and I chose to induce labour at 37 weeks, and 2 days later Sevak was born at 4 pounds and 9 ounces.
When Sevak was born we discovered he had a rare condition called Congenital Diaphragmatic Hernia (CDH), which means his liver was pushed into his diaphragm causing his right lung to collapse. I was told 80% of babies born with this have some level of hearing loss. Sevak did not pass the newborn screening test (which, I believe, had just started that year) and we booked another hearing test right away. To be honest though, that was the last thing on my mind. I just wanted my son to survive through the surgery he needed! After spending 8 weeks in the Neonatal Intensive Care Unit, we finally took our baby home.
When his audiology appointment confirmed Sevak’s hearing loss, I didn’t know what to do or where to start. I found it hard to believe; I was the parent who went home and banged pots and pans to see for myself if this was real. Could it be a mistake? After a few days, the news settled and I realised that this was not something that was going to go away, and I couldn’t ignore it. I knew we needed to start looking into ways to help him. For us the hearing loss was one more thing we had to manage. Sevak also had kidney disease and feeding issues so we constantly had appointments to support and monitor him in those areas too. It was a lot to manage but we decided as a family that we were going to focus on Sevak and handle each of his needs one at a time.
Sevak received his hearing aids when he was 4 months old. I clearly remember when the audiologist put them in Sevak let out a giggle, which I had never heard before! I loved hearing my son laugh at my singing! We went home that day with the goal that Sevak would wear his hearing aids as much as possible during the day. This was easier said than done since Sevak’s head control was weak, and the hearing aids would fall out when he turned his head while laying down. When my husband returned from work, I would tell him I put Sevak’s hearing aids back in his ears a thousand times. I truly felt this was not an exaggeration!
Now that he was wearing his hearing aids, we had to face questions about his hearing from our family. I am really lucky that my parents are very supportive but it wasn’t like that from day one. In the beginning, my mom and dad told me not to worry, that they would pray for Sevak, his hearing would improve as he grows and he would start talking when he was 2 or 3. It would all be fine! I mean, that would be amazing, but I wanted to face the facts and make sure we got the support we needed for Sevak through early intervention services.
We really benefitted from attending the baby group at our early intervention centre. I met so many families, and it was wonderful to hear everyone’s stories and to be able to talk openly with other parents who were going through similar situations. To this day, I’m still in touch with some of those families. After months went by, I finally sat my parents down and gave them a translated copy of the book My Turn to Learn. I told them I needed them to read this book to better understand hearing loss rather than assume Sevak’s hearing would improve over time. The next day my parents both were so different; it was like a switch suddenly went on in their heads. They started to put his hearing aids back in after they would fall out. At family functions, my parents would explain to everyone about Sevak’s hearing. It was such a help, and I was so relieved to have them onboard rather than feel like my husband and I were in this alone. By the time Sevak was 9 months old he was no longer pulling his hearing aids out, and as he grew he would even put his hands on his ears if they came out.
During this time, Sevak’s feeding was getting worse. He wouldn’t tolerate any textures, he had severe reflux, and he was not gaining weight. I was making Sevak crème brulee at 9 months old just to get the calories in him! We made the decision to have a g-tube (gastrostomy tube) put in, and within a couple months Sevak was gaining weight like a typical baby boy.
Fast forward to 2 years old, and Sevak was crawling around and bearing weight to stand against the sofa. He started to walk along the furniture, he was imitating sounds and was constantly giggling; he was such a happy boy and rarely cried. Around that time, we all of a sudden noticed him gazing towards light and not making eye contact. After getting his eyes checked, the pediatric ophthalmologist determined that Sevak had an eye condition which showed retinal damage in both eyes. This added another layer to his care as it could not be corrected with glasses, and he had eye surgery on his left side to put in a buckle to prevent his retina from detaching. Sevak started to receive support through the The Canadian Deafblind Association, (CDBA) which has been very supportive.
When Sevak turned 3 years old, he started attending preschool at our local Child Development Centre. Sevak wasn’t talking but he could understand some simple signs and spoken words. We were told he would not walk and that we needed a wheel chair accessible van. Despite this, we never gave up and continued to focus on Sevak’s mobility and communication.
By the time Sevak was 4 years old, we decided to have another child. We were scared and wondered if our next baby would face similar challenges. It was a stressful time but we knew the odds were rare to have another child with complex needs. It felt magical when our baby girl was born. Around that time, Sevak started Kindergarten. It was difficult adjusting to that but we worked with the school and our transition team to make sure we had a good plan in place that included our goals for Sevak. These continued to focus on mobility and communication, and that December Sevak took his first steps at school. I couldn’t believe this! I quickly packed up my 5 month old and headed to school to see this with my own eyes. It was so exciting to hear him laughing and see him roaming the halls of the school. Once he learned that he can go where he wants, there was no stopping him. Slowly, he started climbing stairs and using some signs. Things were coming along!
Sevak is now in grade 5 and has a full time Education Assistant at school. We still have our challenges but we approach them one component at a time. At age 6, Sevak was diagnosed with autism but there’s nothing we can’t handle. We also found out through genetic testing that Sevak has a gene mutation that causes severe development delay. This is on top of the CDH and hearing loss that we knew about when he was born. Still, with all of this he is thriving and enjoying life to its fullest. Most importantly, Sevak is a happy boy who loves to go for walks and go swimming. His two sisters love to play with him, and he loves to chase them and try to get his hands on their dress fabric for sensory input. His hearing aids are a part of him now, and he lets us know if the batteries have died and will push the ear moulds in if they come loose. Writing it down, it’s hard to believe the journey we’ve had but this path has made us the family we are today.