Audrey’s Story"Audrey was born on July 26, 2006. But it was a rough pregnancy getting there..."
I had trouble getting pregnant and wound up having to take fertility meds, and then once I got pregnant, I was sick the entire time with morning sickness.
The only time that I was sicker than normal was when I flew home to visit family in Alabama for a long weekend. I got really sick and dehydrated and wound up in the hospital. Audrey was ok throughout me being sick, but it was pretty tough.
I wound up being induced on July 25 because of decreased fetal movement. 14 hours later, Audrey was born. She was jaundiced and her platelets were low, and her head was a little small.
24 hours after she was born, she was transferred to the NICU at a hospital about an hour away. We found out three days after she got there that she had CMV. The doctors there checked her eyes, which were ok, but Audrey failed a hearing screen. An ultrasound showed enlarged liver and spleen, and a CT scan showed calcifications and atrophy of the brain. The doctor told us point blank that Audrey would probably never be normal.
The infectious disease doctor that Audrey saw was different - he was wonderful. He was supportive and told us to be positive because her calcifications and atrophy weren't that serious.
Since then, Audrey is doing pretty well. She has some developmental delay, so at 19 months, she isn't standing or walking on her own. She is deaf - but we're in the process of getting her ready for cochlear implant surgery. She's had some kidney issues, but no one can tell me if it has anything to do with CMV yet.
We're hopeful, but still concerned. She wants to communicate, and wants to do things - she loves to shop, and loves to play with her daddy. I'm able to stay home with her, which is a big advantage for her. But that's my daughter!
- Submitted by her mother, Lori
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..."