Noah’s Story"Spirit and determination are two words that describe Noah. These personality traits have always been evident..."
Starting with when Noah was born, on 10/11/2004, in the front seat of our car, en route to the hospital. He was delivered by his dad, Robert, with a little help from a 911 operator. On site he looked like any other healthy 8 lb newborn. His pediatrician, after consultation with an infectious disease doctor, decided to test Noah for Congenital CMV immediately after his birth. This decision was made because on Noah's routine 20 week sonogram an "echogenic bowel" (bright spots on his bowel) was seen. The doctor I was seeing that day decided to run a TORCH screen blood test. This TORCH screen showed that I had been exposed to a primary infection of the Cytomeglavirus. Congenital CMV causes the most damage to babies whose mothers contract it for the first time while pregnant. I never knew that because I had a toddler in daycare, that I was at a greater risk for exposure.
In some ways I was lucky. To this day my regular OBGYN states that he would not have run the blood test to check for a CMV infection that day of my sonogram. Without that blood test, we would not have known that I had been exposed to CMV as a primary infection and we would not have known to run the urine test on Noah when he was born.
That positive result set in motion a string of events and opportunities Noah would not have had, if we had not known he was CMV positive, even later on. We were approached by the pediatric infectious disease team about a new study they were initiating on an oral anti viral medication for Congenital CMV(Vanganciclovir). Noah was one of the first babies nationwide in this study. The purpose of the study was to see if the medication would be effective in reducing the progression of hearing loss, that is a trademark result of the virus.
Noah was moved to the NICU and given a spinal tap to test for CMV, brain scans, MRI's and hearing tests. The tests did reveal a hearing loss, calcifications in his brain, and other brain abnormalities.
We spent the next 3 1/2 weeks trying to spend as much time with Noah in the NICU, without feeling like we were neglecting his big sister at home who did not understand why her new brother was not coming home from the hospital.
We dealt with physicians who had already written him off. Our first neurologist told us, when Noah was just 10 days old, that Noah would never walk, talk, or do anything beyond a newborn level. It is a good thing that Noah was not listening to him.
During the last four years, Noah's schedule has been overloaded with therapies and activities, but as a result, he can walk, learning to run, jump with both feet off the ground (a new accomplishment that he was quite excited about), and his language continues to grow each day. He has struggled with motor issues (Noah has cerebral palsy which effects his right side), hearing loss, feeding disorders, developmental delays, and a seizure disorder. But this in no way describes Noah. Noah has never known the meaning of "can't." His therapists have always stated that his motivation and determination have been integral to his progress.
People can't help but smile at Noah, his energy, excitement, and pure joy for life is absolutely contagious.
There is no reason that this devastating virus should be so unknown. Help me increase awareness and hopefully spare other families and children.
- Submitted by his mother, Lynn Pickus
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..."