Matthew’s Story"I found out I was pregnant January 2008. I was scared, as I was doing my pregnancy alone, well, my mom went to all my appointments with me..."
Everything was normal, went for my 19 week ultrasound, and found out he was a he! A few days later is when my world crashed down. My doctor called me at work (I worked in a pediatric office) and mentioned "echogenic bowels". He immediately wanted me in for blood work.
My blood work came back and the Igg and Igm were both positive...I had NO idea what that meant, so I researched and didn't fully understand. I met with a very rude doctor that didn't help, then another who told me an amnio was necessary. Well not even 4 days later at a high risk hospital in Detroit, I found out my son was swimming in poison...it came back cmv positive. I cried. The very worst part was he had no amniotic fluid for a few months. They tried to get me to medically terminate, I couldn't. Words that I grew accustomed to were "ascites", "severely anemic", "echogenic bowels", "enlarged liver, spleen, heart, umbilica vein", "hydrops" , "olighydraminos", "calcification's". I was told he would not hear, not see, not be self sufficient, well most likely, because no one knew the outcome of the virus, as it's not popular.
I had to go every week for an ultrasound, every week was worse and worse. They thought he was going to die in utero, but the thought of them medically terminating, when everything could possibly turn out okay, just made me cling to that even though as they said was very rare. So I jumped online and found a website on yahoo for cmv moms. I went on a pregnant website to try to find help. I ended up in contact with an awesome doctor that specializes in pregnant women with cmv, Dr. Stuart Adler. I emailed him, and would you know he replied. He gave me his number and when I called, he spoke to me and allowed me to get my doctor to talk to him about ordering "cytogam". I had 3 IV infusions of it. Dr. Adler recommended that my baby be on the Gangcyclovir once born if his urine tested positive for CMV.
My baby was born at 37 weeks, due to his heart rate slowing with labor an emergency Cesarean was done. He had microcephally, IUGR, he had purple blotches all over him. I was so scared, he was 4lbs 9oz, 17.5" long. He was born 08/30/08...today, 03/09, my 6 month old is 13lbs, he can see, he can hear, he can laugh, he can sit up, he can roll over. He is doing everything they said he wouldn't. I did do gancyclovir, let me tell you that was hard. They started it when he was about a week old, and he was on it for 6 weeks. He had a picc line and lived in the SCN (special care nursery) for 7 weeks of his life. I drove every single day from Canton to Detroit.
He finally came home in October. I understand that not every case turns out this way, I am so very lucky. Have faith and hope, everything is given to us for a reason. My son opened my eyes and I am so very lucky with how he is growing. We have every 6 months hearing tests and yearly eye exams, for hearing loss is the most common side effects of this nasty virus. He will go yearly to a developmental clinic to watch him develop. There are no words that will make it better, but talking to people that know what its like was helpful, even though I found them further along in my pregnancy, I am willing to listen, support, and help however I can. We HAVE to stop this virus!
- Submitted by his mother, Erin Rouse
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..."