CMV Parent Stories - Share your Story - Real Story of Congenital CMV

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

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