Just like many of you, I had never heard of CMV. It was never discussed with me prior to or during my pregnancy for either of my children even though 1 in 200 children are born with it and 1 in 4 are symptomatic.

Hayes was born in 2019 at Abbott and luckily this is where Dr Schleiss and his team were conducting a study on CMV. A student came into my room and asked if we would participate--it would be a quick swab of his cheek and I tiredly said yes and forgot all about it.

Fast forward 2 weeks later, I received a call from my pediatrician who tells me Hayes has tested positive for CMV. I knew nothing and immediately start googling. I am connected with Dr Schleiss who patiently answers all my questions. Hayes was born with CMV but asymptomatic as he passed his newborn hearing screen and had no other signs or symptoms. Hearing loss is one of the biggest side effects of CMV and something that needs to be closely monitored as it can change over time.

The tough thing is we don’t know if he can lose his hearing still. He is now 6 and some studies say they are in the clear by 3 years old but then I heard 6 and have seen stories of children having hearing loss at 10. Studies also show a strong correlation of CMV to Autism. Hayes has been diagnosed with ADHD and is struggling with social-behavioral challenges and I always wonder if what he is experiencing is tied to CMV and what could have been done to avoid or prevent this.

And unfortunately, there are many other scenarios for children that are much worse, with the most severe being death. This is why it is so important to support reaearch, education, awareness and advocacy on this topic. I am so proud of the State of MN who worked hard to get the Vivian Act passed so that CMV has been added to the universal newborn screening panel so that all newborns in MN are being screened for CMV so potential intervention can occur. Unfortunately this is not the case nationwide and is federally being debated if CMV should be included in the RUSP, or recommended universal screening panel.

My ask is to have awareness on CMV and how this could affect you and your loved ones. Research and share and support so that we can further prevent this in our children.

Together, we can #stopcmv.