CMV Parent Stories - Share your Story - Real Story of Congenital CMV

Andrew’s Story

"Hello, my name is Ashley. My son Andrew was born on March 19th 2009..."

We had known since the beginning of my second trimester that I had CMV Mononucleosis. After having a chronic fever for 6 weeks, the day after Christmas my doctor admitted me to the hospital to run tests. I was told that the baby was fine but they needed to find out what was wrong with ME. I was relieved because they assured me that baby Andrew was just fine. After 6 days of hell all tests came back normal, but we were waiting on one final test. The CMV test.


Just as I was trying to leave the room to get some fresh air, a nurse stopped me and told me I wasn't allowed to leave the room anymore. My doctor had called and wanted me to stay in bed and rest. That's when I just knew I was positive for CMV. The only problem was I had no idea what CMV was. Hours later an infectious disease doctor and 2 high risk OBs came to my room and explained to me all the dangers of CMV. My heart broke. They asked if I would like to have an amnio done to find out if my baby was effected and we decided not to because it was risky and I had already been through enough. They said that there was no cure or treatment anyway so after a few more days they sent me home with pain meds to help me sleep and be comfortable. They scheduled weekly ultrasounds and non stress tests for the baby.


Each week was hell. Everytime they would call the tests inconclusive. I read more and more about CMV and I was so angry. What did I do wrong?? Why didn't anyone ever tell me what CMV was?? Finally after months of agony Andrew was born via emergency C-section 3 weeks early. My blood pressure was through the roof so they took me in. Andrew was born around 8 in the evening. There were several doctors there waiting for him. After the Neonatologist checked him out,she informed me that they needed to use a tube to help with the fluid but that after that he was able to go to the well baby nursery. I was so happy.


The next day Andrew started to turn yellow. That's when they told us he was jaundice. After a few days we got that under control and 6 days later we were both able to go home. When Andrew was 2 months old his blood test finally came back. His doctor called me and told me that he in fact does have congenital CMV. My heart dropped again. He had been doing well besides some stomach issues. Alot of people were so suprised at how well he was doing. Now here we are.


Andrew is 5 months old and doing okay. He has some stomach issues that we cannot get under control. He cries about 80% of the day. He wants to eat constantly but chokes everytime he eats. He doesn't spit up and the reflux meds the dr has put him on don't seem to be helping. He is beautiful but at the same time Im so worried because he is in pain all the time and we can't find the source. He has audiology tests set up for October and the doctor is considering doing scans this month to find out why he cries and chokes all the time.


I feel that this happened for a reason. I feel God wants to use me to help people get informed. People need to know about this so they can prevent it from happening. If you know anyone who is pregnant or considering becoming pregnant LET THEM KNOW THE FACTS. Spread the word and help future kids be healthy!


- Submitted by his mother, Ashley

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