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

Jeremiah’s Story

"My son Jeremiah was born on June 22, 2005. It was a difficult road to get there but I'm glad I stuck it out because he is the most amazing thing that's ever happened to my husband and I..."

It all began in February of 2005 when I had my routine ultrasound. The first part of my pregnancy appeared completely normal so there was no reason to believe that anything would be wrong. That day everything seemed to be going well but then the sonographer said she was going to go talk to the doctor quick and she'd be right back. My doctor came back in to talk to me and told my mom and I that Jimmy was small for his gestational age and they couldn't find his kidneys. Also my amniotic fluid was very low. She referred me to another clinic to have another ultrasound so they could see him better.


A week later when I had that ultrasound it was the worst day of my life. The doctor and sonographer sat the whole time and talked amongst themselves until the very end when they told me what they thought. The doctor came right out and said that she didn't have a good prognosis. She said his brain didn't appear to be normal, his heart wasn't normal either, and he had club feet. They found one of his kidney's but it didn't look normal either. His bowels were also white and I also had almost no amniotic fluid. At that time they didn't have any answers as to why so they wanted to do an amniocentesis to test his chromosomes. Which ended up coming back normal thank god. That doctor didn't think he was gonna survive and if he did he probably wouldn't live long after birth. She wanted to talk to us about terminating the pregnancy. I couldn't even bring myself to talk about that.


After that I had the horrible job of trying to get into contact with my husband who was in the Navy and stationed in Japan. It was the most horrible set of phone calls and emails that I've had.


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. The only good news we got was at an ultrasound for his heart that doctor said it looked completely normal. After that I chose to go back to my regular doctor who was very supportive and was the only one that had any kind of hope for us. She felt like I wasn't getting good enough answers from everyone and wanted me to press on with it.


On June 22nd, I was 38 weeks and 6 days pregnant so I was going in for my 39 week checkup. Right away the doctor couldn't find his heart beat so they did an ultrasound right away and found it but it was very shallow. I was sent to the hospital so I could be monitored and a couple hours later some nurses came in and said that I was going to be having a baby that day and my doctor was on her way over to do an emergency c-section. Everything happened so fast I barely even knew what was going on. Before I knew it Jeremiah was out and they showed him to me very quickly and took him to the NICU.


We were all so surprised when I was taken down to see him a couple hours later. I was expecting things not to be going well and to see him hooked up to tons of tubes and wires. But he was breathing on his own and not hooked up to anything. He was sucking on a pacifier and doing very well. I got to hold him awhile before I was taken back to my room.


From there he was in the NICU for only 6 days where they did more testing and still had really no answers or diagnosis's. We got to home right away but still were at the doctor's constantly it seemed for them to try to find out what exactly was wrong with him. It seemed kinda random when they did a urine test but after that we finally got some news. His pediatrician said they found the CMV virus and after that they did a head ultrasound where they found the calcification's in his brain. They said he didn't have enlarged spleen or liver that goes along with it but could loose his sight or hearing at any time.


His final diagnosis was congenital CMV, cerebral palsy, a horse shoe kidney, club feet, and muscle issues. He also has trouble swallowing and aspirates almost everything he eats.


Jeremiah's almost 4 now and has done extremely well. He's had tons of speech, PT, and OT. He's severely delayed and doesn't walk or talk yet but we're still hopeful. In January of 2008 he got a G-tube placed and had a Nissen done. It's helped him gain so much weight and he's gotten so much stronger. He can crawl pretty well now and has even pulled himself up on the couch a few times. He's also started preschool and loves it. He has such a personality and loves the other kids.


My husband and I thank god everyday for Jeremiah. He's been such a blessing to us and we hope he's with us for a long, long time.


- Submitted by his mother, Melissa

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