Rachael’s Story"I was fast approaching the age of twenty-one when I found out I was pregnant..."
Kenny and I had not even been married a year yet and I was bound and determined to finish nursing school after the baby was born. We had plans as all parents do. We debated about sports, music lessons, higher education, and names. We had no idea that our plans were about to be drastically changed. The immediate plan was our mothers were going to babysit while Kenny worked and I finished school.
Three weeks before Rach was due, I went into labor on Labor Day that year. I would go into the story of her birth, but that would take too much time, but she was delivered by my mother at my home. I remember the paramedic immediately putting an oxygen mask on Rachael and asking if I had any problems during pregnancy. I replied, "No, it was a perfect pregnancy and she is a perfect little girl!" But, the paramedic kept saying, " She's so tiny honey. Are you sure your 37 weeks?" As soon as we arrived at the hospital, they whisked her away from my arms.
Next thing I knew, the pediatrician was telling me she had some kind of viral or bacterial infection and if she had waited three more weeks, would have been stillborn. I signed papers and next thing I knew she was being transported to the nearest trauma center with a NICU. She spent the first six weeks of her life there.
It was a rollercoaster ride and a preview of the next fourteen years. We learned of the virus that reeked havoc on her little body while in the protection of my womb three days after her birth. Until then, I had never heard of CMV. We figured I contracted the disease from working in our church nursery where I couldn't get enough of babies.
Rachael now is a smiling yet moody 14 year old with severe cerebral palsy. Her right hand and both feet are severely contracted and on rainy days she lets me know it affects her. Our house is one of several routines involving vest treatments, nebulizer treatments, suctioning, and medications. It takes four anti-epileptics, one vagual nerve stimulator and the ketogenic diet to provide her rest from the seizures that exhaust her on a regular basis. Her mouth, due to dilantin (an anti-seizure med) is swollen and painful. Her permanent teeth, even at fourteen, have still not "poked" throught the swollen gum tissue. Sometimes as a CMV parent you have to make difficult decisions and Dilantin has become our necessary evil.
Rachael has a life though. On most days you'll find her and her Daddy curled up on our bed watching sports. Football season is her favorite. She loves books to be read to her, her favorite being "Green Eggs and Ham." She's far from ignorant, yet she still foolishly thinks her mother can sing. She's definately not a morning person and likes to keep me up all hours of the night.
I still struggle with the "what if's" of life and the anger that I was not informed of this disrupting disease. They say that "knowledge is power," and I wished that I had that "power" while pregnant with her to be more careful than I already was. That's why we must get the word out. I want to give other women the power they need to have as much of a successful pregnancy as they can. If spreading the knowledge saves even just one child of a life of pain and limitations it would truly be worth it.
- Submitted by her mother, Christina Hembree
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..."