Gili was diagnosed with congenital CMV (Cytomegalovirus) around 2.5 months. She was tested before then, but we were in between doctors and that is when we got the news. She was treated with intravenous ganciclovir for 6 weeks, followed by Valcyte, which she will take orally until she is one.
Approximately 90% of babies with congenital CMV show no signs in the beginning of their life. It is becoming clear that our sweet girl is in the other 10%. I decided to start this blog when I found very little information about what can be expected of this 10%. I'm not writing this blog to supply information or any consistent flow of news or support. This is just a journal of one CMV story.
In the next couple weeks I would like to introduce you to Gili, our family, and our life. Over the next couple years I hope to paint a picture of what growing up with congenital CMV might be like. I have many questions and I look forward to sharing the answers with you as I learn from experience, doctors, or you, my readers and commenters. Please comment if you can answer my pondering, or if you have questions of your own.
Things I wonder:
- Will Gili be able to be in a regular class when she starts grade school?
- Will strangers be able to tell she's "special" from her face? (I don't mean her sparkling blue eyes and infectious smile.)
- Do CMV babies live as long as other people?
- How often will I be taking her to physical therapy and other types of therapy?
- Will teachers or parents worry about her or my other children being contagious? Should they worry?
- Will she get married and have a normal life? Will potential suiters consider her defective?
- Will she "catch up", we'll forget she ever had CMV, and this blog will be abandoned into the cyberspace abyss?
UPDATE: Two years later, here are my answers.