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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 you're 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 definitely 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.
- Shared by her mother, Christina