CMV Spotlight: Shylah and Kayson
Spotlight on CMV
Welcome to Sunshine and Shattered Dreams! I am so glad to have you here to share your beautiful journey.
My world for the last few years has been advocating, shouting about CMV from the rooftops. The only story I have been sharing, however, is mine, which is not the only one out there. There are (unfortunately) many other families who have gone before us and will come after.
This year, I have decided to use my platform to shine a light on the warriors who fight CMV and the parents who advocate alongside them. This is just 1 of them...
Samantha: Hi! Please introduce yourself and tell us a little bit about your son.
Shylah: I am Shylah Sage, 22 years old. I work for a company called NES assisting adults with mental disabilities with their daily life skills. I have a 9 month old son who was diagnosed with bilateral moderate-mild hearing loss in both of his ears, with the cause being congenital Cytomegalovirus. Kayson was born at 35 weeks due to a placental abruption and it wasn’t until he was 2 months old that we found out he was HOH (hard of hearing). He wears hearing aids in both of his ears.
Samantha: Before Kayson's diagnosis, had you ever heard of CMV, how much did you know?
Shylah: My son was born July 18, 2019 and my boyfriend's cousin had her baby on August 30th, 2019 and she was diagnosed with CMV the day she was born. We did not know that our son was born with CMV or even what it was until she had her baby. Even then we didn’t know much about it, just that she was born with a thing called CMV and it caused her to stop growing in the womb, so she came out very small.
Samantha: How did your journey begin? What was going through your mind?
Shylah: My son failed his newborn screening so we were told to bring him back at 2 weeks for another one. He failed that one as well. The hospital then told us they needed to swab in his mouth for CMV, so they did. We never heard back from the hospital so we assumed it was negative. He then failed a couple more hearing tests and then we started working with an audiologist. At this point he was 2 months old. We did an ABR and she told us about our sons hearing loss. We were shocked because we kept a telling ourselves “maybe he just has a fluid build up” or “maybe he will get over it" or "he will pass the next test”. We honestly weren’t sure about any of it and we didn’t understand it quite yet. We were asking why he would have this loss and how we would know the cause of it when the audiologist asked if he was tested for CMV. I told her he was tested but we never heard back. She called me back later that day and told me that the CMV test was positive. Then the research and panic began. We were scheduled for a meeting with the ID doctor, then ultrasound and scans were set. It was very overwhelming.
Samantha: Does Kayson have any secondary conditions as a result of his CMV infection? For his age, how is he developmentally?
Shylah: Kayson has progressive bilateral hearing loss. So far that is the only thing we have found wrong with him. We feel very lucky to have had clean head ultrasounds, perfect vision, and so far, he is developmentally on track. He is 9 months old and his hearing loss has
already started declining.
Samantha: What has been the hardest moment for you as a mother?
Shylah: I think just the initial shock of it all. Learning about this virus and realizing that I could have prevented it. Feeling like it’s my fault for not being more cautious while pregnant with my son.
Samantha: What is your greatest hope for his life?
Shylah: That my son stays happy and healthy and his dad and I can educate him on this virus and spread awareness for others.
Samantha: This journey through special needs parenting can feel extremely lonely, even when we know we aren’t alone. There is often no physical closeness to a mother going through something similar. Where do you turn to fill your cup? How do you take care of yourself?
Shylah: Support groups on Facebook have been a big help for me. Currently I am in 2 CMV support pages as well as a “parents of children with hearing loss” group. Also, our families have been very supportive and willing to learn and help with anything we need.
Samantha: A life filled with hardness can teach us some amazing lessons on love, kindness, empathy, and joy. What are some lessons that you have learned through your journey that might be helpful to a mother who has just begun?
Shylah: It gets easier. You get over the initial shock. You learn what works for you and your child. There is always a light in the darkness. You are stronger than you think.
Samantha: What is a quote, scripture, prayer, or piece of mediation that you would like to leave us with today?
Shylah: “You are braver then you believe, Stronger then you seem, Smarter then you think, and loved more than you know."
Thank you for sharing your story with us, Shylah. Sharing the things we've been through brings us peace and strength, and provides hope and encouragement to other families who may be facing something similar in any aspect.