Ruth Elyse’s Story"It started off as a very good pregnancy..."
I had the normal morning sickness, but it was nothing like the sickness I had with our first daughter, Delayni, now 2 1/2. I actually lost weight, which the doctors assured me was fine and I would eventually gain weight.
Everything was good up until I was 19 weeks along. We went in for an ultrasound to determine the sex, another girl!! We were so excited. The sonographer asked if I had been bleeding any. I hadn't. She said that the baby had "bright bowels" which is a soft marker for Down Syndrome. We them were reffered to a specialist for a Level 2 Ultrasound.
I was sure that everything was going to be fine and he would send us on our way. As soon as the scan started the Doctor said "Do you see that ascites" to his nurse. Being a Respiratory Therapist I knew what an ascites was and that it was not good. I was on the fence about an amniocentesis. I decided to have one so we could be prepared for whatever was coming. The procedure was not as bad as I had expected. And the amniotic fluid was very bloody, I was actually relieved because the echogenic bowel could have been caused from her swallowing blood.
I hadn't felt much movement since the Amnio, but I didn't think too much about it. On August 25, 2008 during a routine checkup with my new doctor, we discovered that she had no heartbeat. We were crushed.
On August 28, 2008 I was induced. 11 1/2 hours later, Ruth Elyse was born. She was 9 ounces and was 9.5 inches long. At this point we still did not know what had caused her passing. We went on and planned a funeral for her. She is buried very close to our house. We visit her very often.
While I was in the hospital delivering, they drew blood and took a tissue sample from the back of her neck to ananlyze. As it turns out, the Amniocentesis did not grow any chromosones. I didn't even know that could happen. No one told me that.
At my two week checkup, we found out that the cause of death was an "overwhelming acute CMV infection". I find comfort in knowing that I am now immune and this will not ever happen again. Ruth Elyse is happy now in heaven, and I am so grateful that she did not have to suffer or know pain. We will miss her everyday until we meet again.
- Submitted by her mother, Lindsi
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..."