Few women of child-bearing age realize that plain old soap and water can prevent the leading viral cause of birth defects, congenital cytomegalovirus (CMV). Although congenital CMV causes more birth defects than Down syndrome, more than half of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists admitted they do not routinely caution their patients about how to avoid the virus.
I’m a mother who didn’t know about CMV prevention until it was too late for my daughter. Elizabeth was born severely disabled by congenital CMV in 1989. The moment I saw her, I felt a stab of fear— her head was so small, so deformed. The neonatologist said, “If she lives, she will never roll over, sit up or feed herself.” He was right.
How and why did I catch this virus that I had barely heard of? CMV literature states that the virus is spread through bodily fluids such as saliva and urine. Women who care for young children are at a higher risk for catching the virus than women not around young kids because preschoolers are the majority of carriers. Nurses, however, do not seem to be in the risk category because they practice consistent hand washing and aren’t kissing their patients around the mouth or sharing utensils with them, as mothers of young children often do.
While I was pregnant with Elizabeth, I had a toddler of my own and 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. Elizabeth’s case was not a mild one.
It took about a year, but I eventually stopped praying that a nuclear bomb would drop on my house so I could escape my overwhelming anguish over Elizabeth’s condition. Life did become good again; though it took a lot of help from family, friends, the Book of Psalms and a couple of prescription sedatives.
Sixteen years after Elizabeth’s birth, I awoke on her birthday extremely proud of her. My daughter had fought hard to stay with us, surviving several bouts of 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 a very happy little girl. She also had 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. Elizabeth smiled at anyone who would stroke her hair or cheek. When she wasn’t busy, she sat propped on our couch watching cartoons with a big lazy dog we got from an animal shelter.
Two months after her 16th birthday, Elizabeth died suddenly during a seizure. Holding her body in his arms and looking into her lifeless eyes, my husband Jim cried, “No one is ever going to look at me again the way Elizabeth did.” Now my girl would be forever sweet 16.
At least Elizabeth’s suffering is over. “Forever Sweet Sixteen” is what we have inscribed on her headstone.
In an effort to educate people who have never heard of congenital CMV, I wrote a light-hearted memoir about Elizabeth’s life with her old devoted canine. Anything But a Dog! The Perfect Pet for a Girl with Congenital CMV (Unlimited Publishing) includes interviews with the country’s leading CMV experts and raises funds for CMV research and parent support if purchased through the National Congenital CMV Disease Registry.
How can you reduce chances of contracting CMV?
- Refrain from kissing children around the mouth.
- Refrain from sharing food and utensils with others, especially children.
- Wash your hands diligently with soap and water after wiping runny noses, changing diapers or doing similar tasks. If soap and water are not available, use alcohol-based hand gel.