Cytomegalo... huh?

I've sat down to write this post a million times in the past 1.5 weeks since we found out that CMV was now a part of our life. I had no idea where to being, what to say, how to explain it. I still don't. But it's here and it's not going anywhere and while it was incredibly devastating at first I now see this as an opportunity to help teach and educate others so that hopefully they don't end up where we are... or worse.  Not to mention I seriously need to give an update on our little one. Levi's entire life is blogged... I'm falling down on this job for number two. I suppose it's expected.

February 4th we had another OB appointment. I was 9 weeks and a couple of days and the doctor just wanted to reconfirm that the baby was growing well and normally. Everything looked great. Baby finally looked like a baby. I inquired about my CMV titer status and asked to have it tested. I am exposed to CMV at work (known exposure) and wanted to be certain I was "safe" working with my clients.

So, that brings us to the whole "what is cytomegalovirus" conversation. CMV is a virus. It's related to varicella (chicken pox), mononucleosis (mono) and herpes simplex. It is extremely common. Somewhere between 50 and 80 of adults in the United States will have had the virus before the age of 40. When you get CMV you will probably never notice. It's pretty silent but sometimes can look like mono (tired, sore throat, just generally blah for a few weeks). If I had that, I'd just blame the weather or allergies or the common cold. So, right about now you are trying to figure out what all the fuss is about right? Well, if you have never had the virus before and you get it while you are pregnant you could pass it onto the fetus. CMV is the number one cause of congenital infection, meaning being born with an infection. It is the leading identified viral cause of cognitive impairment and the number one nongenetic cause for sensorineural hearing loss. Basically there is about a 20% chance (although it is lower in the 1st trimester and higher in the last) of a baby being born with symptoms of CMV if the mother gets it for the first time in pregnancy.

So tying it back in to our baby. My blood came back positive. Basically, if my IGG was positive and my IGM was negative it would mean I had CMV in the past and was not at risk for giving it to the baby. But, lucky for me my IGG and IGM were both positive. They were actually come to find out alarmingly high.  These results loosely indicate I've had a primary infection of CMV in the past 3 months. There are some other blood tests that can be done to try to rule out a re-infection, but they are not 100% conclusive so we aren't doing them.

So armed with way too much knowledge about CMV outcomes and such we set down the path to "do something". I found through another woman's blog similar to my own information about a Dr. Gail Demmler who is a CMV specialist with Baylor College of Medicine and Texas Children's Hospital. She was awesome. She called me personally and talked to me about my case and ultimately set me up with an appointment at TCH for a consult. We waited not so patiently for our appointment today. I lived in a fairly constant state of "worried sick" until today. William and I both knew that we would love our child no matter what, but we were both pretty determined that if we could do something to treat the baby in utero we absolutely would. That was our number one goal, find out if the baby has it so we could do something.

Fast forward through many sleepless nights to today. We had an 8:30 am ultrasound at TCH. The ultrasound went well. The tech showed us our little one and confirmed that so far there were no abnormalities. The baby is still early in development but so far so good. We then met with a genetic counselor and that was pretty uneventful. William and I have no desire to find out if our baby has the Trisomies. We then met with the doctor and loved her. She told us about the clinical trials that are currently accepting patients that might be applicable for our baby. She gave us thoughts on an action plan which we agree with and have accepted as our official plan. Basically I'm going to transfer care to Texas Children's (my choice completely, although when she offered to see me to the end how could I say no), be seen at 16 weeks for a check up, have a 20 week anatomy scan and amniocentesis, and then make a new plan once we know the results. Amnios can be a little scary, but I really trust this doctor and it's the only way we can be sure if the baby has it or not. We need to know so that I can take immunoglobulin if it does. So, now we have 4 weeks "off" until our next appointment. By changing doctors we are probably sacrificing our chance to find out gender earlier than 20 weeks, but we will live.

We appreciate everyone's thoughts and prayers. We are feeling much more at peace with everything but know that our journey is far from over. So thankful for the early health of our baby!

Oh, almost forgot... we also have a new due date. Baby Stephens is officially due on August 28th. You can expect to meet him or her on or before August 21st!

I'll follow up a different day with what you should do if you are around small children and don't want CMV!