Tobias’s Story"Let's see...Where do I begin...Well...What started off to a good pregnancy led to things going terribly bad..."
My mother and I went to my regular monthly Dr's appointment... We had a routine Ultrasound when I was about 3 months pregnant. They couldn't find out what I was having because he had his legs crossed. So, having Medicaid, you can only have other ultrasounds when having problems so my mom told the nurse I was having complications and not feeling him move too much. So she gave us a script to go to Bayfront Hospital to get a stress test done.
When I got there, they did the ultrasound (mind you they still couldn't tell what I was having!). They saw that the blood flow from his umbilical cord had stopped...I was completely shocked. I had no idea that anything like this was happening...So they decided they were gonna make me stay at the hospital just in case his blood flow got reversed (me taking blood from him).
A few days into staying at the hospital, they did another ultrasound and found out indeed, I was taking blood from him.
That's when they decided they were going to have to do an Emergency C-section.
So on January 12th, 2008, only being 27 1/2 wks pregnant, I gave birth to my son, Tobias Dean. Weighing in at only 1lb 13 ounces, 13 3/4 inch tall. He was so tiny... They immediately Intubated him, he had a line in his umbilical cord so he could get all his nutrients. He had a little Jaundice that went away quickly.
They finally told us that he had CMV, something I had never ever heard of which they said I could have contracted either from cats or getting a cold from kids which I did. My niece was sick and gave me the flu about a week before I had him.
While in the NICU, he had NUMEROUS amounts of platelets, so many I can't even count. He had 2 hernias, Glaucoma in his eyes, Calcification on his brain. I remember the drs telling me he Could be blind, deaf, mentally retarded and have epliepsy. God that was scary. But I am happy to say he has none!
He was in the Hospital for a total of about 6 mos, from Jan 12th--July 14th.
He was intubated for about 3 months. The nurse told me he literally pulled the tube from his mouth and thats when they kept it off. I guess he knew it was time... He was then put on a nasal canula till about a few weeks ago. He also had a hard time feeding so they placed a g-tube in his stomach which just got removed yesterday! His eye dr has said that his glaucoma is just about all gone. He has his hearing test in Jan. which I think he'll be just fine.
He has numerous appointments all of which I can barely keep up with... Neurology, Nephrology, Opthamology, Pulmonology, Gastrenterology, Physical therapy, Speech... I think that's about it anyways...
My son is doing very well he went from 1lb 13 ounces to a big 14lb 3oz.
- Submitted by his mother, Heather
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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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..."