Trenton’s Story"My pregnancy with Trenton was very difficult..."
The doctor thought that he had Down Syndrome but after an amniocentesis that came back negative to all defects, they thought that Trenton would be born a healthy baby but would be very small. As my pregnancy went on, the doctor became more concerned for Trenton's health so, at 3 weeks early on July 26, 2006, they decided it was time to do a ceasarean. After birth, Trenton was taken immediately to the NICU where the doctors were clueless as to what was wrong. His spleen was enlarged, small head, and his platelet count was very low. They began giving him platelets through transfusions and running many tests.
While we were waiting for the results, they went ahead and let me go home from the hospital. Leaving my baby there and not knowing if he would make it was one of the hardest things that I have ever done. Going back and forth to the hospital and home (where I had a 2 year little girl named Shelby and Eric had a 10 year old boy named Kinnon) was crazy. Finally, after 9 days of Trenton being in the NICU we finally had answers. My heart dropped when they told me the news, as I had already lost my first child, Kristofer, at 1 day old. Eric and I had never heard of Congenital CMV before so the research began. I wanted to know everything.
We spent every moment with Trenton. They told us that he could live a normal live or that we could lose him at any time. He was in a fragile state. Trenton saw the doctor once a week and to have his blood drawn to watch his platelets. Then, after a couple of months, one of his appointments turned for the worse and his platelets dropped to 2,000 and should have been at least 50,000 normal are 150,000 to 200,000 for his size. We were air flighted to Children's Mercy in Kansas City, MO where when they checked his platelets again and they had fallen to 200. This is when you can start bleeding from anywhere--eyes, ears, finger, and toes.
The doctors started the transfusions again. They also started him on antibiotics to control the Congenital CMV. While he was there, we had a vision test and a hearing test which came back great. Trenton was in Children's Mercy for 8 days before we got to go home with a pic line in so he could still get his meds. Over the next few months, we made several trips to Kansas City.
Jumping forward past all the doctor's appointments and about a year, Trenton started physical therapy and developmental therapy in our home once a week. Our developmental therapist suggested we look into the Cerebral Palsy Center in a nearby town. Trenton now attends the CP Center 3 days a week getting physical, speech, and developmental therapies. We are awaiting an occupational therapist to start.
He wears AFO's and can use a stander but not for very long. After about 15 minutes his legs begin to tremble. At 3 years old, Trenton was diagnosed with CP. We are currently trying to find a surgeon to do a hamstring and tendon release surgery. Even though this little boy has physical, mental, developmental, and speech delays, he always has an awesome outlook on life. Trenton has a loving sister and brother who would not trade him for the world. We are so proud of Trenton and his achievements but still have a long road ahead of us.
- Submitted by his mother, Crystal 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..."