Riley Jean’s Story"When I was pregnant I was losing weight one week then the next I gained. So the doctors sent me to the hospital for an emergency sonogram to see what was going on, that's when we found out she had CMV..."
I didn't know what CMV was. Me and my boyfriend were scared and had a lot of questions. They told us either way when I had Riley that she was going to be dead.
At 32 weeks I went in for a doctors appointment to monitor Riley's heart. Well, her heart stopped and I spent a week in the hospital to keep her on a monitor, she started doing better.
At 34 weeks on 10/30/08, I went in for an emergency c-section. She was 3lbs and 2ozs and 18" long. She was in NICU for 3 weeks then finally came home.
She was home for a week, then we ended up in St. Josephs. She went code blue, we almost lost her and they put her on life support. She looked horrible, then they took her off and she did better without the tubes. She was there for almost a week then we brought her home in an ambulance because they told us she wasn't going to make the car ride home, we were scared. She now has hospice.
She's now 5 months and growing like a weed, she can see and hear but they say she might lose that as she gets older. She still has hospice.
Riley has breathing problems and she died like 4 times on us and we had to do CPR to get her back. It's rough on her and we are still getting told she's not going to live over a year, hopefully she shows them wrong.
Riley is seeing specialists and and a pediatrician. She's doing better- still has a hard time with her breathing and her head is small because of the virus and she has an enlarged liver and spleen. She's also on a apnea monitor.
I hope this helps moms with CMV babies, it's really hard.
Submitted by her mother, Rachel
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
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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..."