This spring, my husband, 2 year old son Finn and I welcomed Jasper into this crazy world. He was perfect and seemed to be very healthy.
That’s why when we received the phone call that the newborn screening test was positive for CMV, we were confused, shocked, and honestly, really sad.
The following week was really hard. Within a few days, we had gone from an easy breezy family of 4 (as easy breezy as it can be with a two-year-old and a newborn) to watching our 4-week-old baby undergo audiology tests, blood tests, a brain ultrasound and MRI and having to decide whether or not to put our precious baby boy on a medication that could potentially suppress his immune system… during a pandemic. We were really scared, but the team at the Children’s Hospital of Eastern Ontario (CHEO) was incredible and so supportive during it all and Jasper was an absolute champ. Since that week, things have gotten better and most of the time things feel very normal. Jasper is a happy, hungry baby and his smile has an incredible way of calming any concerns that enter our minds.
There are, however, two things in particular that have made this diagnosis difficult for us.
The first is the unknown. We already know that Jasper has some mild sensorineural hearing loss in one ear and calcifications on his brain. But what does this mean for him? The range in symptoms is broad and can present over time. Therefore, it is a waiting game to see the impact of CMV on our son. We are trying to live in the moment and enjoy Jasper one day at a time, but there are moments when we can’t help but think about the worst-case scenarios. No matter what challenges the virus inflicts on Jasper, I know that Jasper will always be perfect to us and we as a family can handle them and will do everything we can to support him to thrive. However, such challenges did not have to be a part of his journey. This leads me to the second thing that we struggle to deal with.
CMV is preventable. Jasper could have had perfect hearing, could have had a future that did not hold the increased possibility of physical or developmental delays. The past year I have been diligent with my hand-washing and measures to avoid catching COVID. I could have been more diligent to do the same with CMV. But I, like most people, had not heard of congenital CMV. I did not know that having my eldest son in daycare could increase my risk of exposure. I did not know if I had or had not had previous exposure to the virus. In hindsight, it is easy to say that I would have taken heightened precautions, and maybe I would have. But then again, could I really last 9 months without kissing my slobbery little two-year-old? This is why, as much as I think an increase in CMV awareness is so incredibly important, and people deserve to be educated on this when they are planning to have a child or pregnant, I do not think it is enough.
Universal screening is so important to identify these children so we can support them to live their best life despite their diagnosis. I believe in these initiatives because they will help babies like Jasper who have already been infected. However, this is all reactive. What I hope to see happen is for the infection to be avoided in the first place. What we really need is a vaccine to protect unborn babies and stop the spread of the virus to these unborn babies.
I know there is a vaccine in the works, but it is still years out. COVID has shown us how quickly a vaccine can be released when the demand is there. This is why I believe we need to make people aware of this virus and make them care. This is not a virus that you need to travel to catch or to partake in unsafe behaviour. This virus is prevalent, spreads easily, and can completely change the course of an unborn baby’s life. I wish I could have protected my son from it, but I can’t change the past. I can, however, try to help others from being in this situation. This is why I am grateful for the individuals advocating for CMV awareness and change.
On June 19, my family walked for Jasper, for the other families and children infected by congenital CMV and for the future children who we can hopefully protect through spreading more awareness and making more people care about eradicating this virus altogether.
Rylea, CMV Mom, Ontario