Thursday, October 29, 2009

The first time we heard of CMV

I've mentioned CMV in passing in this blog but haven't done a post specifically on CMV. And there is a good reason I haven't - when I first started researching CMV it scared the daylights out of me. So, I stopped looking into it for a while and focused my attention on getting Emma the medical treatment we wanted (i.e., Cochlear Implants), the medical insurance we needed, and the therapy schedule in place - all of which, quite frankly, is a lot of work.

And then I came up for some air! Today I look at Emma and know in my heart that she will be just fine. I think about CMV and I still feel some heartache and worry, but I am at a much better place today than two years ago. I am now ready to talk about CMV and our experience with Emma.

I first want to talk about the first time we heard of this awful virus and will follow it up with another post on CMV and prevention. For now, here is our story:

When Julia was about a year old we were thrilled to find out that I was pregnant. How lucky we are! I had a feeling from the very beginning that we were having a girl and I was so happy that the would be so close in age. Sisters!

This pregnancy was a bit different. I was sick from almost the very beginning - morning sickness - that lasted for about 8 months. Yuck! I was also very, very tired. I thought it was because I was so sick and also the standard pregnancy tired. I would go to bed before 7pm each evening and sleep straight through until morning. This lasted for about 4 or 5 months and I pretty much just played with Julia a little bit, worked and slept. Then I started to feel better.

We agreed that we wanted to know the sex of the baby and were excited for the first ultrasound. Emma didn't cooperate and we left not knowing if she was a girl or boy. I figured my OB would send me for another ultrasound so there was still another shot to find out before the delivery. The ultrasound showed an echogenic bowel - basically some blood in the bowels. My OB assured me it was likely nothing to worry about and sent me for a 2D ultrasound with a specialist. Everything appeared normal at this ultrasound an we left knowing that Emma was a girl (YEAH!) and that everything measured just fine. We were very relieved and happily anticipated Emma's entrance.

Emma came a couple of days late and weighted in at 7lbs. 3oz.! The birth was - thankfully! - uneventful and our darling Emma was just perfect. We were anxious to get home. Before we left we learned that she failed her newborn hearing screening in her right ear. She passed her left ear. Everyone told us not to worry - this was common and is usually due to some excess fluid in the ear from the birth process and we should follow-up with another hearing test in about a month. I wasn't too worried since I figured at worst, she would still have one good ear to hear. We went home and started to settle into life as a family of four.

We followed-up with the hearing test and another test and another test and eventually realized that Emma is deaf. That really rocked our world! We found this out the day before Thanksgiving. I'll never forget that day. We had to follow-up the Monday after Thanksgiving for some confirmation tests but we were not expecting the diagnosis to change. I cried a lot that Thanksgiving season. Emma was the first deaf person in my life. I kept thinking when we aren't in a room she must feel so lonely since she can't hear us in the house. I held her and rocked her and didn't want to talk to anyone. In a couple of days I was ready to search the internet for options. I did a lot of research on cochlear implants and was excited about the technology. Then we went off to Orlando, FL for a vacation that was planned before Emma was born. I didn't feel like going, but it really was the best thing that could have happened. By the end of the vacation we had accepted that Emma was deaf and were looking forward to getting the cochlear implant (CI) process started.

When looking into CIs, I found that quite a few of the children had multiple disabilities. I wondered how those parents were handling that and thought I should stop worrying so much about Emma being deaf and thank God that she was only deaf. Everyone thought that Emma was deaf due to a genetic mutation (connexin 26) since she presented herself so well. She did have some reflux and back arching, but that didn't cause much concern. We met with the geneticist to determine the cause of Emma's deafness and he prescribed all the blood work to test for genetic reasons and then "threw in" the urine test for a virus since she did pass one ear in newborn screening and lost the hearing very quickly.

We had an MRI scheduled in early December to confirm that Emma had an intact auditory nerve - a requirment for a CI. The MRI showed an intact auditory nerve and also some concerning stuff with her brain. That REALLY threw me into a tailspin. What did that mean?

Our pediatrician called a neurologist and sent us over to see her the next week. We had found that it takes A LONG time to schedule specialists visits and that the parents usually schedule them, so when the pedi's office called to let me know of our apt. I started to know something was definitely not right. We saw the neurologist on Dec. 31 (Emma was almost 3 months old) and she told us that Emma tested positive for CMV and prepared us a bit that Emma might also have cerebral palsy, but she figured it would be a mild case. Huh? Excuse me? What happened to genetically deafened???? And what the heck is CMV? Cytomegalovirus? Can you spell that for me please? And that is how we first heard of CMV.

3 Comments from readers:

Katy said...

Someone once described learning about her child's disabilities as a trickle that turned into a stream. It was an apt description.

Well, now you've given me something new to Google.

JNR said...

Hi Cousin, I'm Joanne from ClanClancy. I wanted you to know that you made me aware of CMV and I have passed the info on to my niece who is pregnant with her first child. Thanks for that.

Also, I have been enjoying seeing Emma's progress. Her biggest cheerleader, Marge, has been keeping us updated. Keep up the good work, you are doing amazing things with your two beautiful daughters.

The Calm The Storm said...

Thanks for sharing :o)