Dalen’s Story"We found out last September 2008 that we were expecting our 2nd child. A few weeks later we went for an ultrasound to see how far along I was..."
I was 6 weeks. I was put on bedrest because I had complete placenta previa which meant I had an ultrasound done every couple of weeks. At 20 weeks we learned we were having a boy and that my placenta previa had corrected itself so I was able to go back to work. Everything was good until at 34 weeks I started having contractions and was put back on bedrest. We also learned at that visit that I tested positive for Strep B.The doctor ended up putting me in to induce me on May 25th, 2009. The plan was to have me put on pitocin (to help me dilate since I wasn't dilated) at 8 am & then be took off at 12pm then put me on cervadal (to thin my cervix) at 6pm that evening so that my doctor could come in the next morning and break my water, then deliver.
After a couple of hours on the pitocin, the monitor was showing really bad contractions that were stressing the baby out. At the time I was not feeling anything at all and had no pain meds so when they took me off the pitocin I ate lunch. Around 2:30pm I started hurting so bad that I requested pain medicine. The nurse came in to check to see if I had dilated and I was completely dilated to 10 cm. She went and got the doctor on call to check me. They had to give me a dose of antibotic because I was Strep B postive. While I was getting that I also got an epidural.
At 4:15 the doctor came in to break my water and noticed that the baby had a bowel movement in the womb so they called the Respitory Team to the room. And 10 mintues later after a couple of pushes, Dalen was born at 4:44 weighing 8 lbs 6 oz. As soon as he was born (the dad didn't get to cut the cord) the respitory team took him to clean his lungs out so he would swallow the bowel movement. After they cleaned him up the nurse handed him to me.
When I looked at him I noticed he was covered in red dots (widespread petechiae). I asked the nurse why he was covered in dots and she said some babies are born like that. Little did we know are world was about to change. We didn't get to hold him long because he had to be taken to NICU to be checked by the pediatrician since I was Strep B positive. After 45 minutes I was starting to get worried, I had not heard anything so my nurse from labor went to the NICU.
When she came back she had the pediatrician with her. He told us that Dalen would have to stay in the NICU because he had an enlarged spleen and liver also that he didn't know what was wrong with him. My heart sank. I felt like I was in a show on Discovery Health Channel. A neonatologist (NICU specialist) came in an hour later to tell us that Dalen's platelet level was low and he needed a tranfusion. Also he was running some tests to find out what was wrong with him. He had sent some blood work to the Mayo Clinic in Minnesota.
The next day the doctor told us that the CT scan on his head showed some brain calcifications and that the eye doctor noticed he had scarring on the back of his retina. The test results wouldn't be back until he was 4 days old. We felt like our world was falling apart and I couldn't help my sick baby. Also I had a 3 year old daughter at home that didn't understand why mom and dad had to stay away.
Finally the results came back and it was congential CMV. The doctor told me that since Dalen didn't have a small head, that I had more than likely caught in the last week I was pregnant. He called LeBonheur Children's Hospital to asked the Disease Specialist if there was any medicine. The Specialist did not recommend giving him the Gancyclovir. We were also told that since I had contracted it after his brain was developed that we were looking at the low end of disabilties.
When the platelet count stabilized at 9 days old, he was able to go home. How could I have a healthy kid and then have a sick baby? I didn't understand it. I had never even heard of CMV, that is why I want to spread the word and try to keep it from happening to someone else. My OBGYN said that he learned about CMV in school but in his 12 years of being a doctor he had never seen a case. I turned to the internet to help answer some questions.
Dalen is 3 months old now, as far as we know he is profoundly deaf in the right ear. He has to go for regular hearing tests on left to make sure he doesn't lose it. He has 6 doctors he has to see for regular visits.
I wouldn't trade anything in the world for him. He is my miracle baby. I thank God everyday that I still have him. In my eyes he is perfect.
- Submitted by his mother, Miranda Thomas
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..."