Paul - Tennessee

Paul - Tennessee

I am an auditory-verbal therapist, and I have worked in listening and spoken language programs in Nashville and Memphis, TN for almost nine years. I now work in only early intervention, so most of my clients are ages 0-3. My situation is probably incredibly unique as I knew quite a bit about CMV prior to starting our family. So much so, that I had a titer performed before trying to get pregnant. My OB assured me that I already would have had CMV, but I pushed for it anyway. I found out the following week that I had never had it. She recommended I proceed with trying to get pregnant and just wash my hands well after my therapy sessions. She also suggested that I redo the titer if I felt like I had a virus while pregnant. I had two colds during that pregnancy, but both my titers remained negative. Our daughter was born at 40 weeks, and I really didn't think too much about CMV for a while. 

When our daughter was 17 months old, we decided to try for another child. I knew the importance of handwashing/no kissing on the mouth/no sharing of utensils/etc., but I honestly did not think it applied until pregnancy. I practiced excellent hygiene at work, but probably regular "toddler-mom" hygiene at home. One month later (at 3w6d), we found out we were pregnant again. I immediately locked my toothbrush in the medicine cabinet and practiced all of the above. Probably more carefully than almost any "normal" person would. I knew the risks of CMV, and I was going to do everything NOT to let it happen.

Flash forward to my 8-week appointment, and I requested the titer again. I got a call 2 days before my 12-week appointment, and my doctor requested more blood work. At my 12-week appointment, she told me my IgG and IgM were both positive, and that I had low avidity. She said I had an exposure to CMV within the past 3-4 months. She told us not to worry, and that there was only a 15% chance of it passing to our baby, and if it did, only 1 in 5 would have any disabilities (and if they did, it would probably "just be hearing loss.") Still, she referred us to an MFM. We had ultrasounds at 14 and 15.5 weeks, and everything looked perfect. We found out we were having a little boy, and we began sharing the news. I felt him moving early on, but in week 19, I felt him move less. It was so early, I didn't worry much at all. In our 20-week anatomy scan, the ultrasound tech was unable to find a heartbeat. I went in to the hospital that night and delivered him the next morning. We requested all the testing they could possibly offer (PLUS CMV testing because that is not part of the usual battery). When all of the results came in, he was completely normal, but my placenta was positive for CMV. My OB told me "this is the first fetal demise I have ever had due to CMV." Later, when pressed, she told me it was the first she has ever tested. I love my OB--- she was awesome through all of this. I only share this information to further highlight the lack of awareness amongst wonderful physicians.

It has now been four months... four really, really hard months. We cremated our son, and the hospital did give us such a sweet memory box with footprints, a hat, etc. Our story doesn't really seem to have a bright-side (yet). However, I am hopeful that somehow our story can help other families learn more about CMV and hopefully bring awareness to the importance of CMV awareness even before conception. 

We’ll always long for the countless days we missed with Paul (March 5, 2019).

Shared by his mother, Katie