Cassie’s Story"I was 19 and single when I got pregnant with my daughter. I was working in a daycare with the babies..."
I had a completely normal pregnancy (except they kept checking for twin because my stomach got so big). When I went into labor with her, she went into distress and I had to have a emergency C-section. Everything went fine with the surgery but she came out only 5lb 5oz. She was so small she looked like a premature baby even though I went full term. It was really surprizing since my stomach was so huge. They didn't find anything wrong though so I thought I had a healthy baby girl.
I later found out that the doctor that delivered her noticed she had really tight fists (which is a early sign of seizures) and never said anything or ran any tests. When she was three months old, she started having seizures. They were mild and not very frequent so when I took her to the hospital to be looked at they acted as though I was just being paranoid. They even asked me if I was sure I hadn't just startled her?
Anyway, after pushing and proding the doctor and many blood tests, they diagnosed her with CMV. I was so scared. I went through alot with her, she was on so many different medications for her seizures, I can't even remember their names. Her seizure medication seemed to make her a zombie so at about 5 years old, I took her off the meds and she hasn't had a seizure since. (I wish there would be more research into these meds or something because I know they didn't work for her and seemed to make them worse.)
She has CP, some hearing in one ear, but deaf in the other. Her vision is okay but it took her years to really look at anything because they said her brain wasn't understanding what she was seeing so she wouldn't look. She walks with a walker with supervision and uses a wheelchair. She doesn't speak, mostly due to hearing problems. She is still diapered but we are still working on toilet training her, she has some success then she reverts back. That is how her learning has been since birth. She will learn something then just seem to forget it and have to be taught all over again.
She is very mentally handicapped so she has never learned to read or write. She feeds herself some finger foods but is normally fed. Alot of times though it seems that on the inside is a very bright, intelligent girl just trapped in a body that won't do what she wants it to. Being a single mom and having a handicapped child is very challenging. I had periods where I almost lost custody of her because someone thought that being a single mom I shouldn't or couldn't handle raising her. I fought for her each time and won. We are a team and we wouldn't know how to survive without the other.
I had three other children after her and thankfully they didn't have any problems. I think it's making them better people to grow up with Cassie in the family because they realize people with disabilities are okay and they treat her and other disabled people the same as everyone else. She is the most beautiful girl inside and out.
She is now 20 years old and is in her last year of school. She is my angel. She laughs and giggles and enjoys life. I say she is friends with angels because of her wonderful happy personality. I am glad to have found this website because I have never met anyone else with a child born with CMV. If I even bring it up, people need me to explain what it is. They have no clue what it is and have never heard of it. It's nice to read of other families and know that I am not alone.
- Submitted by her mother, Tonna Bartlett
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..."