Elizabeth’s Story"The moment Elizabeth was born, I felt a stab of fear. My immediate thought was "Her head looks so small, so deformed..."
The neonatologist declared, "Your daughter has profound microcephaly, her brain is very small with calcium deposits throughout. If she lives, she will never roll over, sit up, or feed herself." He concluded that Elizabeth's birth defects were caused by congenital cytomegalovirus (CMV), a virus that may have no symptoms for the mother, known as a "silent virus," or it may present itself with mild to severe flu-like symptoms to a mother during pregnancy.
The Centers for Disease Control and Prevention (CDC) estimates that about one in 150 children is born with CMV infection and approximately one in 750 is born with or develops permanent disabilities because of it. CMV is the #1 viral cause of mental retardation and hearing loss, more common a cause of disabilities than Down Syndrome.
How and why did I catch this virus that I had barely heard of? I read the CMV literature. It stated that women who care for young children are at a higher risk for catching it as preschoolers are the majority of carriers. The virus is spread through bodily fluids such as saliva and urine. Pregnant women need to be careful not to kiss young children on or around the mouth or share food or towels with them. Careful handwashing must be practiced after diaper changes, wiping runny noses, etc. Why hadn’t my OB/GYN warned me about this?
While I was pregnant with Elizabeth, I not only had a toddler of my own, but also ran a licensed daycare center in my home. I felt sick at what my ignorance had done to my little girl. In milder cases, children with congenital CMV may lose hearing or struggle with learning disabilities later in life. But Elizabeth's case was not a mild one.
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. Weighing only 50 pounds, she looked odd to strangers as a result of her small head and big adult teeth, but she was lovely to us with her long, thick brown hair, large blue eyes and soul-capturing smile. Although Elizabeth was still in diapers, and could not speak or hold up her head, she was still a very happy little girl, with a love of adventure, long car rides being one of her favorite activities. She especially loved going to school and being surrounded by people, paying no mind to the stares of other children who approached her in public. She smiled at anyone who would stroke her hair or cheek.
Less than two months after she turned 16, I dropped Elizabeth off at school. Strapping her into her wheelchair, I held her face in my hands, kissed her cheek, and said, "Now be a good girl today." She smiled as she heard her teacher say what she said every time, "Elizabeth is always a good girl!" With that, I left.
At the end of the day, I got the call I had always feared.
"Mrs. Saunders, Elizabeth had a seizure and she's not breathing. We called 911."
We met her ambulance at the hospital. The medical staff did all they could, but she was gone. After they unhooked her from everything, my husband Jim and I took turns holding her. While holding Elizabeth on his lap, Jim looked down into her partially open, lifeless eyes and cried, "No one is ever going to look at me again the way Elizabeth did." I knew he was right. No one adored us as much as Elizabeth.
It has been almost three years since we lost Elizabeth. At times I miss her so much I can barely breathe. Yet at other times, I feel happy for her, never again will I see that look of terror in her eyes as a seizure begins and she can't catch her breath. Never again will she be cold or sick. For the remainder of my days Elizabeth will be forever "Sweet Sixteen."
Today, my sorrow is gradually being replaced by a passion to prevent others from going through what Elizabeth did. Although congenital CMV is more common that Down Syndrome and can be prevented through careful handling of saliva and other bodily fluids, OB/GYNs still do not warn women of childbearing age about the infection and how to avoid it.
My memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV," published by Unlimited Publishing LLC, is the humorous account of Elizabeth and her devoted old dog from an animal shelter. It includes the latest prevention advice and treatment of congenital CMV and is available through the National Congenital CMV Registry at http://www.unlimitedpublishing.com/cmv/ where a percent of the proceeds is donated to CMV research and parent support.
To see pictures of Elizabeth or to read an excerpt of "Anything But a Dog!" visit my Web site at www.authorlisasaunders.com. Please help me stop the spread of CMV!
- Submitted by her mother, Lisa Saunders
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..."