Ryan’s Story"Ryan was born in South Jersey on August 1, 2001 after an uneventful pregnancy and delivery..."
In the hospital, I already knew something wasn't quite right and asked everyone I saw why his head seemed so small. The doctor finally agreed with me and wrote him up for microcephaly as were we being discharged home. That is where it all began... After meeting with a neurosurgeon, neurologist, geneticist, and developmental pediatrician and undergoing test after test after test, some twice, the only thing that showed up was frontal lobe polymicrogyria (PMG) on his MRI. At the time we didn't know that this was itself a diagnosis, but thought it more a symptom of a genetic or metabolic syndrome.
More testing and no definitive results, along with some scary possibilities and prognoses, led us to focus on treating the cerebral palsy aspect of his defect instead of focusing on a cause. We spent the next few years with EI, outpatient PT, OT, and ST, and went to different doctors like Ortho and Physiatry.
He is known as a moderate spastic quad, which means that all 4 limbs have tight muscles and he is on the moderate end of the spectrum. After slow, but steady progress with therapy, a couple of surgeries, and Botox injections every 6 months, I once again wanted answers and began searching for a cause. That's when I found the Lissencephaly Network and heard of Dr Dobyns work with Liss and PMG. We attended the 2005 Liss Get-Together in Ft. Wayne IN and met with Drs Dobyns and Chang. After seeing his scans, they decided with a 95% certainty that Ryan's PMG was caused by the CMV virus. They said that his scans showed areas of calcification(a hallmark sign of CMV infection, apparently) and that his Gyri pattern was such that his brain was once larger and shrunk after being attacked by the virus. His scans then made their way to Dr Barkovich at UCSF who gave him the final diagnosis of Bilateral Frontal Parietal PMG. I had a hard time accepting that a virus did this to him, especially since I am a nurse, and it was devastating to think that I probably brought this into our home.
Today, Ryan is 8 years old. He is one the happiest children you will ever meet, with a huge smile for just about everyone he comes in contact with. He stands and walks with a gait trainer and dynamic stander. He sits for short periods by himself, and commando crawls everywhere (really fast too). He just learned to ride an adaptive tricycle by himself, though steering is an issue, and is beginning to learn to use a power wheelchair (but thinks crashing is more fun than steering properly).
He doesn't speak, but can sign a couple of words and is beginning to learn to use a more advanced augmentive communication device than his current GoTalk. His EEG is normal and he has never had a seizure(knock wood), but remains at high risk for developing them. He does not have a G-tube, he eats a pureed diet, and drinks well. He loves to have bits of real food like french fries, chips, and cheetos, and absolutely hates ice cream. He is healthy and takes only Miralax 3x/week for constipation.
He attends a special needs school 5 days/wk, continues with outpatient PT and ST, and has weekly hippotherapy(which he loves). It's been a long road and the road ahead is hopefully much longer still. Though we're sure to have many ups and downs along the way, our mission has always been to help him be the best Ryan he can be!
- Submitted by his mother, Susan Cleary
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..."