Jacob’s Story" I was 18 weeks pregnant with my second son. I can remember the day all so well..."
I just wanted to know if I was having a boy or a girl. They told me I was having another boy and I thought to myself, awww shucks, a little girl would have been nice but a little boy will be so much fun for our son James. While I am still digesting that I am having another son, the sonographer told me she needed to get the doc to look over some things. My soon to be doctor came in and looked over my ultrasound. She tried to seem not so worried and told me that my son had echogenic bowels. She explained to me that it can be caused by a number of things but the only way to tell would be to perform and amniocentesis.
I couldn’t even think of doing that. I wasn’t even sure that I wanted to know. All I knew was I wanted this little boy that had been growing in me for the past 18 weeks. A few days later I went in for the amniocentesis and lots of blood being drawn. My blood test came back inconclusive. They told me that my levels looked like I had toxoplasmosis. I was positive I didn’t have that. I didn’t even have a cat. My doctor said maybe I got it from working out in the yard. Well, after 2 weeks of stressing out over how I got toxoplasmosis the amniocentesis results were in. I had contracted CMV. I had no clue what that was. I researched to no end on Google and all I could find were negative things. I had no clue what my child would come out like. Definitely the toughest 22 weeks of my whole life.
On September 2nd 2006, Jacob Carter was born. He was so cute. I couldn’t believe he had anything wrong with him. The nurses tested his urine as soon as he was born and sure enough he was shedding the virus in his urine. This was the beginning of a long journey. Jacob got a mild case of Cerebral palsy. He is bilateral deaf. He failed his newborn screening hearing test as well as many hearing tests and ABR’s to come. He also has poor muscle tone and a huge feeding issues. Jacob just moved up to non-blended foods at age 2 1/2 and we still have to chop his food very finely because he doesn’t really do a whole lot of chewing.
Our first sign of something other than normal with Jacob’s muscle tone was him being so tense near his back that he was rolling over at two weeks. Shortly after he would arch his back so much that we were unable to hold him in a cradling positioning. He was very strong and still is. The older he has gotten the floppier he has been. Carrying him around was pretty challenging because he was like carrying a load of jello around. He has been under the growth chart for his weight and head circumference since he was born. The pediatricians agree that Jake follows his own growth chart a few lines under the 0 percentile.
He had a weaker immune system than most healthy normal children. He spent 3 days at the hospital from contracting Respiratory Syncytial Virus (RSV). We were ensured that Jacob would not catch RSV again because he should have built up immunity to the virus. Two months later we are back at the ER with his second round of RSV. What a tough time this little guy was having.
Jacob couldn’t hold his head up until he was about 12-13 months old. He sat up for the first time at 18 months with lots of hard work and Physical therapy. On July 1st 2008, Jacob received a right cochlear implant. He is unable to talk and very rarely enjoys wearing it so that is a continual work in progress. Jacob is a smart little cookie and he has learned how to sign more, milk and eat.
He started using a crocodile walker at 2 years old and we have just moved up at age 3 to taking the sling out and walking really slow with the walker. He wears AFO’s on both of his feet because his ankles roll in. He also wears a brace on his left hand because he never uses that hand. He pretty much ignores it. The doctors believe that he shys away from his left arm and leg because his right portion of his brain has a good amount of grey matter on it, which controls the left side of his body functions. He just mastered pulling to stand on the couches. He actually figured out how to pull himself up on the couches but he really has to be in the mood for it.
All in all, this virus has changed our lives but my little guy is so tough and I am so thankful that he is here with me today. Every minute with our little man makes me appreciate the life that we have together. These children are put to the test every day and they are so strong. I am truly blessed to be his Mommy!
- Submitted by his mother, Rosemary Carter
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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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..."