Joshua’s Story"I found out I was pregnant at 3:03 am on July 18, 2007. I remember the date and time because it was the most surreal moment of my life..."
My husband, Ben, and I had tried for 2 years to get pregnant. We had seen infertility specialists; I had taken two different drugs and gone through all the tests. We had finally decided that we had had enough and that we were going to build our family through adoption. So you can imagine my surprise when I decided to take my last pregnancy test and up popped two lines. Two lines? Wait...two lines was pregnant. Right? So I re-counted. Definitely two lines. I was pregnant! For 15 minutes straight I sat in the bathroom and counted those two beautiful lines.
The next 9 months were idyllic. I had virtually no morning sickness, I felt great and loved being pregnant. All of our ultrasounds showed a healthy, perfectly developing baby. At 18 weeks, we found out that we were having a boy. We immediately started planning family trips, talked about what he might be when he grew up, and picked out a name. Our miracle, Joshua, was born four days early at 10:33am on March 28, 2008. He weighed in at 6 pounds, 12.5 ounces and was 20 inches long. He got 9's on his apgars and passed his newborn hearing test. We were elated.
Two days later, just before were discharged, our pediatrician came in to visit. She told us that she'd like us to have an ultrasound and x-ray done of Joshua's skull. She said that she was concerned about the size of Joshua's head because it seemed a little inconsistent with his body size. She thought the sutures of his skull may be fusing prematurely. She assured us that it wasn't an emergency, but a precaution. A few days later, we took our new baby back to the hospital for the tests. The ultrasound looked normal, but when the x-ray was taken, things took a different turn. The doctor who read the x-ray just kept saying, "I'm so sorry. I'm so sorry." I had no idea why he was sorry, but I knew it wasn't good. I clung to Joshua and cried.
Our pediatrician told us that the x-ray had revealed calcifications in Joshua's brain. She said that only a few things would cause calcifications and they wanted to run more tests to see which infection it was. On April 7, 2008 the tests confirmed that Joshua had been born with CMV. Josh was immediately admitted to the hospital for a six week course of antiviral treatment, and Ben and I soaked in what this all meant. Words like cerebral palsy, microcephaly, brain damage, seizures, blindness, deafness swirled around us. We saw specialist after specialist and Joshua was subjected to so many tests. We got both good and bad news. The good news was that his vision was completely unaffected and his hearing loss was minimal in one ear. The bad news was that the calcifications were diffuse and throughout which predispose him to seizures and cerebral palsy later. We kept asking what all of this meant for Joshua and how he would be affected and always got the same answer... "we don't know". We were blessed to have our team of doctors work with us and after a week, we were allowed to take Joshua home and continue his treatment from home.
Joshua is now 18 months old. He is a total ham and loves the camera. In fact, he will stop crying when any camera is presented and the flash goes off! He loves lights, the wind in his face, and jewelry that sparkles. He loves sweet potatoes and papaya and riding in the car. He's a dare devil and loves to swing and be tossed in the air - the higher, the better! He's a shameless flirt and loves to cuddle. He's laid back and easy going and hardly ever gets upset for long. He is also developmentally delayed. He is able to sit independently for a few minutes, but he is not sturdy enough to be left alone. He can stand with support and is using a gait trainer to help him learn to take steps. He has been diagnosed with spastic quadriplegic cerebral palsy. His hearing is still in tact and his vision remains unaffected. He is pretty much non-verbal, but he can sign 'daddy', 'mama', 'eat', 'more', and he definitely makes his wishes known. He is microcephalic and one of the sutures in his skull has begun to fuse prematurely. He receives speech therapy, PT and OT through our local early intervention program and we have seen him make tremendous progress through the help of traditional and nontraditional therapies.
We are incredibly proud of our son. He has continued to amaze us each step of the way. And while our dreams for our son may have faltered for a short time, we are still planning family trips and talking about what he might be when he grows up. We believe that Joshua is perfect just as he is and that he will do amazing things in his lifetime. We can't wait to see what he surprises us with next!
- Submitted by his mother, Jamie Nodine
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..."