Savanah’s Story"Savanah was born on March 25, 2004 in Orem, UT. I had an extremely wonderful pregnancy..."
After 12 long hours of labor, Savanah entered this world beautifully. As far as we knew, we had a healthy baby girl. The following day, we learned that she had failed her newborn hearing screening. The nurse came in and reassured us that this is fairly common, and since she was a few weeks early there might still be fluid in her ears. I did not think another minute about it.
6 weeks later I brought her back into the hospital to have her hearing tested again. FAIL. The nurse told me that my Savanah was deaf, I was devastated. I immediately called my husband and we began researching as much as we could on deafness.
We were referred to a local ENT where he decided to run a TORCH test on her, after several weeks, the results for the "C" in this test came back positive. Savanah had contracted CMV. The doctor knew very little about it, in fact everyone seemed to know very little about it.
For our entire summer, it consisted of specialist trips and trips to the local children's hospital. Slowly, we started to learn more and more about CMV. I wanted to help educate more people, so many people around here know so little about it. There were MRI's, urine collecting, lab draws and more and more tests. I felt like we were stuck in a fog, being an experiment, so many professionals were still so unsure regarding the virus. I researched as much as I could. Savanah's grandmother, who has Lupus, also contracted CMV from Savanah in September of 2004 and fought for her life. It was a very scary time, I couldn't believe that my little baby could be so infectious at that time.
At this current time, Savanah is a very vibrant, extremely healthy almost 6 year old. She received a cochlear implant on April 13, 2007 and has done wonderfully with that. We feel blessed as parents, that she is a healthy child who has battled with CMV.
- Submitted by her mother, Sarah Prentice
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..."