Cytomegalovirus (CMV) and pregnancy

CMV is something most people never heard of. Surprising seeing it is a very common virus. I never heard of it until I was 24 weeks pregnant and was very, very ill. They say most people are never even aware they have CMV and that it does not have very obvious symptoms. I was a bit different as I was having sever fever and sweats every night for a week. I was going to the ER every day due to how sick I was feeling it took 5 visits before they tested me for illnesses that could effect a baby and that is when they found I was positive for CMV. That's when my research began.I hadn't heard of CMV and found it hard to get more then the most basic information on this illness. All I knew is that CMV is not very serious to most anyone EXCEPT an unborn child who's mother contracts it for the FIRST time during her pregnancy. Any information past this point was hard to find and I spent more time listening to the OB/GYN and the Doctor who did my amniocentesis. I didn't learn until much later that most of the actions I took during my pregnancy to protect my baby were not necessary and even dangerous for my unborn child. I will explain from my perspective as a mother speaking with Many specialists at Bostons Children's Hospital  and going through this for the last 2years what I found I did wrong and what information I should have had that even Doctors DID NOT KNOW!

When I was diagnosed with CMV I was 24 weeks pregnant. That is a critical time for many reasons. First you are not allowed in Massachusetts to have an amnio after 25 weeks of pregnancy, however this is the only test that will allow you to know if you baby has contracted your virus before birth. Why would you want to know if you child has contracted CMV. Well for me I was unsure if I was ready to raise a child that could be blind, deaf, lack some or all motor skills and may never learn to speak. These are all possible outcomes of a baby born with CMV that is contracted in the womb. When I learnt about how his life and mine may be effected I really wanted to know if he had it so we could make an informed decision on what are next step would be. When I went to my OB and told here I wanted an amnio done she made me feel bad. She stated to me the only reason a parent would have an amnio was if they were thinking of termination and that was not right. I want to remind EVERY mother and father out there that your doctors personal opinions on how you handle your situation is not something they should even mention, though mine choose to be disgusted with my decision we made our appointment anyway. THIS IS NOT THEIR CHILD OR LIFE THAT IS EFFECTED FOREVER!

We were sent directly to our amnio appointment as I was days away from the cut off for this test as well. Now some very important information about choosing to have an amnio. There is a risk your amniocentesis could cause you to loose your baby,  they said 1 in ever 200 amniocenteses cause a miscarriage, along with other possible complications you must make this choice for yourself but I NEED to give you a piece of information I did not know when I choose to have this done. I was told many months later by an infectious disease doctor from Boston Children's Hospital my amnio was an unnecessary risk!!! It takes 4-6 weeks from the time you find you have contracted CMV to the time you should test your baby. They explained to me that the amnio I had done would only come out negative (as it did) but that it was not accurate because the virus takes time to spread from you to your unborn child. So if you are at the cut off for an amnio don't worry or take the risk it will NOT be accurate anyway and is not worth the possible miscarriage or other complications. I had no idea that I had risked my sons life for no reason at all. My OB and the Amnio Doctor did not even think about this or give me that very important piece of information. I do not want another mother to go through making that decision without knowing when you should do this test and when it isn't worth the risk. Lucky for me there were no complications and my pregnancy carried on normally.

As I stated my amnio came out negative to my relief and I carried on as nothing was wrong. As my pregnancy went on I did the basics, picking out his Doctor was one thing I took seriously and met with a few pediatrician  before picking the one we went with. I had informed this Doctor of my CMV infection and of the amnio results. No other discussion was ever brought up on this topic, as I thought the negative result was all I needed. As you now know that test was not accurate and even if it is done at the proper time there is one more step mom's should take. The moment your child is born (before you breastfeed!) have them retest for CMV. Why would you do this? Well here is my reason for that advice...

We did not have my son tested at birth I assumed they tested but never asked. I breastfeed my son for many weeks and had some complications with my lactation. During the next few weeks as a new mom I noticed tremors in my sons legs and arms. I brought this up at his Doctors appointment and we were sent to Boston Children's Hospital Neurology center. When I told them about my CMV and amnio they decided to test him that day for CMV and it came back POSITIVE! We had a new problem we were not sure if contracted it before or after birth anymore because I breast feed and I could have passed it to him in my breast milk after he was born. There is NO test to find out when he contracted this virus. We then spent the next 6months going to Boston Children's Hospital for all the tests given to a child who contracted CMV in the womb. This included Hearing test every 3 months, vision tests, blood tests MRI's, CAT scans and more depending on what they find. As you can imagine any new mom's worst nightmare is sending your child to Doctor's waiting for results, traveling to a Hospital full of other sick children hoping he doesn't contract anything else from the visits, and praying that everything will be okay. We also were advised to have a early intervention therapist to come onces a week to my home to work with him to develop his motor skills and watch to see if he was hitting milestone markers on time.

As you can imagine his care became our lives for months we waited and watched and prayed things would come out okay. This all could have been avoided if we had just had him tested at birth! Unfortunately I and his pediatrician did not know any better! Now for the even bigger bomb shell, we have 3 years of testing before we will know if he is effect. They have informed us that at any time in his first 3 years of life these motor skill, speech, and hearing disabilities could show up IF he contracted CMV in the womb. My son is 15 months old and we still watch to make sure he is hitting milestones on time. His hearing will be tested twice a year through age 3 and he will have a few more vision tests and an MRI. As of now all we can do is hope that he continues to pass his tests and continues to grow and develop as a normal child does. But this could have been avoided with a simple blood test at birth. No mother should have to wait 3 years to find out if her child will be okay and I hope this blog will help you make better decisions then I did during my pregnancy and birth. I have never blogged before but I hope that this will help someone, somewhere that has found out she has CMV and is pregnant. If you want any more information please feel free to ask. But my most important points are don't have an amniocentesis until 4-6 weeks after your diagnosis and test at birth especially if the amnio was negative!