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Preventing birth defects virus--CMV (cytomegalovirus)

Posted Jun 11 2009 8:11pm

Through my public speaking, articles and book, Anything But a Dog! The perfect pet for a girl with congenital CMV, I am trying to prevent the #1 viral cause of birth defects, congenital CMV (cytomegalovirus), which causes more disabilities than Down syndrome.

My daughter was born severely disabled by it in 1989 and since her death in 2006, I've been distressed to learn that pregnant women are still not being warned that many toddlers carry this virus in their saliva (and other bodily fluids). Women need to be taught not to kiss their children around the mouth, share food with them, and to wash hands diligently after wiping runny noses, etc.

I was invited to speak at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community scientists and families about my daughter Elizabeth . Mothers approached me after my speech, holding their children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"

More than half of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists (ACOG) admitted they don't routinely caution their patients about CMV. One was quoted in FitPregnancy magazine as saying "The list of things we're supposed to talk about during women's first visit could easily take two hours and scare them to death.”

For government information about CMV, visit the Centers for Disease Control and Prevention (CDC) at: www.cdc.gov/cmv/

The following is a short about my daughter Elizabeth Saunders and CMV prevention
“Elizabeth: Forever Sweet 16 (because I caught CMV when pregnant)”

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. Hands must be washed after wiping runny noses, diaper changes, etc. The CDC states: “If soap and running water are not available, you may use alcohol-based hand gel.” For alcohol-based hand sanitizers to be effective, the Food and Drug Administration (FDA) recommends a concentration of 60% to 95% ethanol or isopropanol.

Why didn’t my OB/GYN tell me about CMV and how to prevent contracting it? 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.

It took about a year, but I eventually stopped praying that I'd be struck dead by lightening so I could escape my overwhelming anguish over Elizabeth's condition. Life did become good again--but it took a lot of help from family, friends, the Book of Psalms, and a couple of Valium! We were eventually able to move ahead as a happy, "normal" family.

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. When she wasn't busy, she sat propped on our couch watching cartoons with a big, lazy dog we got from an animal shelter.

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 three years since we lost Elizabeth (1989-2006). 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. To learn more about CMV prevention and emerging treatments, see pictures of Elizabeth with her devoted old dog, or to read an excerpt of my memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV", visit my Web site at http://www.authorlisasaunders.com/


Please help me stop the spread of CMV! If you would like me to speak to your group about CMV prevention, please email me at: saundersbooks@aol.com

Lisa Saunders, Suffern, NY
The Times Herald Record wrote about my CDC speech, work in CMV prevention, and included quotes from internationally known CMV experts in this article: http://www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313

To watch my short TV news interview about CMV, please click into: http://www.wusa9.com/video/default.aspx?aid=70445&storyid=80502

To hear me for 52 minutes, listen to my radio interview at: http://www.achieveradio.com/archplayer.php?showname=Fearlessly%20Speaking%20%20with%20Jacqueline%20Wales&ShowURL=http://audio.achieveradio.com/fearless-fifties/Mar-08-2009-at-02-00PM---Fearlessly_Speaking.mp3
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