Jamie’s Story"Hello, my son's name is Jamie and he is 14 months old. He was born with Congenital CMV..."
Pregnancy wise, everything was normal, I had 5 scans, all fine...
It was only 3 weeks before having my son that I got a sore throat but it was only during the nights though!! Strange!! I went to docs about it but was told it was just a virus so I didn't think anything of it. I simply went home and carried on...
Jamie was born at 37 weeks and weighed 8lb 3oz, his head circumference was 34c, nice and healthy, no problems other than a lot of pressure bruising on his face and one hand. The midwives said he was fine, checked him over and left him with me on the postnatal ward.
Despite myself and my husband being concerned about the bruising they told us he was fine, time and time again!!! I wasn't happy so they had a Pediatrician check him over, that was all fine!!!
Only 12 hours later I still wasn't happy and asked if they could check him again. He was fine, but to reasure me they did do a blood test to check his platelets.
The story of shock sadness and anger all begins from here!!!.....
Jamie was taken to the Neonatal ward and had some blood taken. 2 days later we received the shocking news, "JAMIE HAS CONTRACTED A RARE VIRUS CALLED CMV"!
He had low platelets and an enlarged liver and spleen, "AND I'M AFRAID HE MAY BE DEAF BLIND AND SEVERLEY DISABLED"! We were in total shock. All I wanted to know from that moment on was "Can he get through this and be ok????"
Jamie had his eyes checked first, they were ok, then his hearing which was also ok. Then for the big: one a MRI scan...
Jamie had no calcifications but he did have 2 bleeds which were grade 2's.
During the time Jamie was in hospital he had 2 platelet tranfusions and was very well and needed no other medical help, which was confusing as we were being told Jamie would be, or was seriously sick.
We didn't know where to turn or ask as no one had any experience in CMV. Different doctors told us different outcomes and said Jamie's severity was on different scales. We didn't know what to do!!!
Jamie came home from hospital 3 weeks after he was born, he did have wind problems which settled with Colief and from 6 months was fine. Jamie hit all of his milestones when he should have and is a very happy, alert, energetic child.
Jamie is only seen by his Neonatal doctor every six months, I thought that he would have been seen alot more by ear specialists and other doctors, but no!!
I watch Jamie very closely as I am looking for something to change as I am terrified something is going to go wrong because Jamie has so far been lucky and so I think that somewhere down the line something will go wrong...
Jamie can still hear and see and is on target with developement. He is hectic and has a bad temper apart from that and his own little quirky habits he is a lovely, happy child who likes to talk lots of baby talk and get attention from everyone! He's also very cheeky and it's a joy to be his mother!!!
- Submitted by his mother, Emma St. John
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..."