Representative Johnson, Senator Gerratana and distinguished members of the Public Health Committee:
I am Lisa Saunders of Mystic, Connecticut, parent representative of the Congenital CMV Foundation, and author of Anything But a Dog! The perfect pet for a girl with congenital cytomegalovirus.*
I am in support of H.B. No. 5147, “AN ACT CONCERNING NEWBORN SCREENING FOR GLOBOID CELL LEUKODYSTROPHY AND CYTOMEGALOVIRUS AND ESTABLISHING A PUBLIC EDUCATION PROGRAM FOR CYTOMEGALOVIRUS.”
I am a parent who didn't know how to prevent congenital cytomegalovirus (CMV) until it was too late for our daughter Elizabeth. The moment she was born in 1989, my first thought was, “Her head looks so small—so deformed.”
My doctor told us, "If your daughter lives, she will never roll over, sit up, or feed herself." Elizabeth's birth defects were caused by congenital CMV. I was given literature stating women who work in daycare, or have a young child in daycare, are at higher risk for catching it as preschoolers are the majority of carriers. Mothers must wash their hands after handling toys and should not kiss their toddlers around the mouth.
Why hadn’t my OB/GYNs warned me about this—especially since, according to the CDC, congenital CMV causes more disabilities than Down syndrome? While I was pregnant with Elizabeth I had a toddler plus ran a licensed daycare center. Nowhere in the licensing literature was there a CMV prevention message. In milder cases, children may lose hearing or struggle with learning. But Elizabeth's case was not a mild one.
Over the years, my husband and I watched our daughter endure cerebral palsy; frequent pneumonia; major surgeries, including spinal fusion; and worst of all, seizures. Yet despite it all, Elizabeth remained a cheerful, happy little girl. By her 16th birthday, we felt so proud of her. Although she only weighed 50 pounds, was still in diapers and unable to speak or hold up her head, she was lovely to us with her wavy brown hair, large blue eyes and soul-capturing smile.
Elizabeth especially loved being surrounded by people and going to school. Less than two months later when I dropped her off, I strapped her into her wheelchair, held her face in my hands and kissed her cheek. I said, “Be a good girl today!” She smiled as she heard her teacher say, “Elizabeth is always a good girl!” Elizabeth died several hours later of a seizure.
While holding her body on his lap, my husband looked down into her lifeless eyes and cried, “No one is ever going to look at me again the way she did.”
After presenting Elizabeth’s story at the international Congenital CMV conference at the CDC in 2008, mothers pushed their children toward me in wheelchairs and asked, “Why didn’t my OB/GYN tell me how to prevent this?” One mother even asked, "Learning what you did, why didn't you shout it from the rooftops?"
Last summer, when Utah passed a bill similar to this one, I finally found hope that CMV prevention would become as famous as the “don’t change the kitty litter” rule when pregnant. According to an article co-authored by the CDC’s Dr. Cannon, “The direct annual economic costs of caring for these children are estimated at $1-2 billion…by missing prevention opportunities, we in the medical and public health communities are washing our hands of the congenital CMV disease epidemic.” Please do your part to shout CMV prevention from the rooftops by passing this bill. I would be happy to answer to any questions.
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In addition to my testimony, I ask you to consider the published testimonies of support for this bill from Yale University’s Dr. Eugene Shapiro, Professor of Pediatrics, Epidemiology and Investigative Medicine and from Dr. Demmler-Harrison, the Director of National Congenital CMV Disease Registry, as well as the other doctors who have worked with congenital cytomegalovirus and support this bill.
- CMV is the most common viral infection that infants are born with in the United States.
- About 1 in 150 children is born with congenital (present at birth) CMV infection. This means that in the United States, about 30,000 children are born with congenital CMV infection each year.
- About 1 in 750 children in the United States is born with or develops permanent problems due to congenital CMV infection. In the United States, more than 5,000 children each year suffer permanent problems caused by CMV infection.
*ABOUT THE BOOK, "ANYTHING BUT A DOG! THE PERFECT PET FOR A GIRL WITH CONGENITAL CMV (CYTOMEGALOVIRUS)," WRITTEN BY LISA SAUNDERS AND PUBLISHED BY UNLIMITED PUBLISHING, LLC:
This is the story of a mother’s humorous and moving search for one pet to suit two very different daughters-one a tomboy, the other mentally and physically disabled from the # 1 birth defects virus, congenital CMV (cytomegalovirus). Lisa Saunders says “no” to her daughter Jackie’s pleas for a dog, fearing it will be too rambunctious around Jackie’s disabled little sister Elizabeth. But she does make her a promise she thinks will never come to pass: “If God brings a dog to our door, then you can have it.” In the meantime, the family wrestles with a series of dysfunctional pets: a flesh-eating hamster, an attack cat, killer ants and a very stinky rabbit. Then one day, the unexpected happens: a shivering, dirty puppy shows up at their door. But is this dog really Heaven-sent?
Plus: The latest news on how to prevent the far-reaching but under-reported effects of congenital CMV, the #1 viral cause of birth defects-more common a cause of disabilities than Down syndrome. It also contains highly useful sections with Resources, Contacts and Support for anyone whose life is touched by CMV.
