"I found out I was pregnant in either May or June of 2006. My pregnancy went very well and I went to every doctors appointment. They said I was healthy so nothing out of the normal, or so I thought..."
So then I went to my first ultrasound and of course I was excited, I mean what mother isn't excited? So then I go have the ultrasound and everything looks normal and I'm happy. Until everything changes- they say he has a problem with his heart so the heart is the only thing that's a problem. They said 1 of the heart chambers was, I don't remember but there was a problem. I had an ultrasound every month actually through-out my pregnancy, just the heart they were looking at.
At 37 weeks and 2 days I gave birth, he was 6lbs 14oz and 19". He looked good until they said his head looked small and he had so many problems he had kidney, stomach, and liver problems and his stool was abnormal so there was a lot of things wrong. Then after him being in the hospital for more than 1 week they said he had CMV. I was like, "what? I don't know what that is?". Until they told me... I was devastated. I didn't know what to think I was in complete denial.
So now my son is almost 2 years old and he is extremely disabled. He sees physical therapy, speech therapy, occupational therapy, nutritionist, a therapist to help his seeing, and he's on the feeding tube. I'm not going to lie, all of it was alot of work and I put him with foster parents. I do see him every Friday and I am going to every doctors appointment still. I told everyone that I want to be there for him no matter what. Now he's having surgery cause he has hip dysplasia and I'm going to be there throughout the surgery.
Everyone- putting my son up for adoption was the hardest decision I've ever made. Even though I do still see him, I feel incomplete and I feel horrible but I know what I decided was the right thing for me and for my son...
And now I know I'm not the only one, thanks everyone for being supportive here.
- Submitted by his mother, Alicia
Perhaps no one is able to give greater insight into living with congenital CMV than the parents of those children and adults born with this disease. Click here to read their stories.
Lisa Saunders
"Sixteen years after her birth, I awoke feeling so proud of Elizabeth on her birthday. She had fought hard to stay with us in the land of the living, surviving several bouts with pneumonia, seizures and surgeries". ... more
Melissa Prosper
"For the rest of my pregnancy I got bounced around from specialist to specialist for all kinds of testing. I had MRI's and ultrasounds and with all of them came more bad news. It seemed like every doctor had no hope for him"... more
Rosemary Carter
"Two days after his birth, he failed his newborn screening in both ears. He didn't like being held because he liked to bend his back backwards a lot. He failed all hearing tests and we did an ABR"... more
Sharon Caldwell
"As a new mom I believed she was just a little slow and she would catch up (she was 3 months) but I did as the doctor wanted and that is when all the tests began"...more
more parents stories Share your CMV Story
Please include details about you and your child's experience with congenital CMV. You're encouraged to include information about your pregnancy, delivery, diagnosis, prognosis and how your child is doing. Feel free to write about your thoughts and feelings as you have raised your CMV child.
Your experiences will encourage and strengthen other CMV parents and will offer the public invaluable insight about the CMV virus. These compelling stories can be the key to positive change - policymakers, the press, and other key influencers will learn more about congenital CMV and its profound impact, largely unseen around the United States and the world, until now...
Send your story to: email@stopcmv.com.
Real Story of Congenital CMV"Imagine giving birth to a baby and finding that your baby was exposed to a dangerous virus during pregnancy.
This virus, Cytomegalovirus (CMV), could have a questionable impact on your child’s development and prognosis and you have no outlook as to what your child’s life and medical situation would be. You were never informed of this virus by your OB/GYN while pregnant and were never told to take any precautionary measures to prevent exposure. You blame yourself for allowing harm to come to your unborn child and you wonder how and where you may have acquired the virus and what you could have done to prevent it. Upon learning that you likely acquired the virus from small children, even possibly your own small children, you blame yourself for not being more careful but you also slightly resent your other children for indirectly harming your newborn.
When you research the internet and search for information about CMV, words like "herpes" and "HIV" come up in many of your searches and you feel additional shame and guilt wondering what you did to harm your baby. When you read about CMV, you read in pregnancy and parenting forums that it is "rare" and "uncommon", coupled side by side with data from medical sites, putting statistics closer to 1 in 150..."