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 I also ran a licensed daycare center in my home. I felt sick at what my lack of knowledge 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.
Until OB/GYNs make CMV prevention a standard practice of care, I'm trying to "shout it from the rooftops" through my light-hearted memoir about my girls and their series of dysfunctional pets, Anything But a Dog! The perfect pet for a girl with congenital CMV, which culminates with the unusual account of how a big, old homeless dog found his way to Elizabeth's couch and of their quiet bond. I also try to interest the media in Elizabeth's story and how her death could have been prevented (see one newspaper interview at: What every pregnant woman needs to know.)
The Day's Grace magazine featured Elizabeth's story and the lack of congenital CMV prevention education on December 18, 2013--her 24th birthday. It is available for viewing at: Loss and love: Author raises awareness about preventable birth defect
Short news clip about congenital CMV and my daughter Elizabeth and her dog at: USA 9 News clip)
Many who work to prevent the kind of suffering Elizabeth endured, in addition to mandatory CMV education, are proposing pregnant women get a blood test to see if they have a primary infection. One benefit of that is the current nationwide study to test the efficacy of giving CMV infected women CMV antibodies. See: Current CMV Trial--need participants
Ask you representatives to follow the example of the State of Utah and make congenital CMV education mandatory through the state's Health Department. You may use my letter posted on my blog, http://congenitalcmv.blogspot.com/, as a sample: http://congenitalcmv.blogspot.com/2013/07/utah-health-dept-offers-ccmv-education.html
3. Share information about my memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV, which is available for free viewing (the first several pages) on Amazon by clicking on the "LOOK INSIDE" feature (if purchased through the National CMV Disease Registry, a portion of the proceeds go to parents and CMV research.) Reviews of my memoir include: "Saunders takes readers on a road trip as harrowing as any Dog Whisperer training challenge...Beyond the laughs about a dizzying pet search, Saunders' dog tale is about a mother who candidly reveals her family's burden, love, and acceptance of a daughter born with severe disabilities—and the people, and pets, forever touched by her life." Tonia Shakespeare, Rockland Magazine
4. Helps others who work to prevent CMV. You can adjust the following letter to suit your interest/concern:
See: Loss and love: Author raises awareness about preventable birth defect
5. Share the following congenital CMV information and prevention sources with the media and/or doctors:
“Washing our hands of the congenital cytomegalovirus disease epidemic”: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379
"Knowledge and Practices of Obstetricians and Gynecologists Regarding Cytomegalovirus Infection During Pregnancy --- United States, 2007": www.cdc.gov/mmwr/preview/mmwrhtml/mm5703a2.htm
2006 PubMed Central article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1779612
Article quoting OB/GYN why CMV prevention isn't discussed in Fit Pregnancy Magazine, June/July 2008 issue: Protect Your Baby From A Tot-Borne Virus or visit: www.fitpregnancy.com/yourbaby/babycare/40723077.html?subsection=baby_health_development
For more information about congenital CMV and how you can protect your pregnancy, contact:
Gail J Demmler MD, Professor of Pediatrics at Baylor College of Medicine, Director of Congenital CMV Disease Registry, Clinic and Research Program at firstname.lastname@example.org or visit: www.bcm.edu/pedi/infect/cmv. The Registry supports CMV research, disseminates information and provides a parent support group. Registry: (832) 824-4387.
Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, can be reached at email@example.com
Lenore Pereira, Ph.D., Congenital CMV Foundation founder and Professor, Microbiology and Virology, Cell and Tissue Biology Department, University of California San Francisco, can be reached at firstname.lastname@example.org, or visit www.congenitalcmv.org/ which includes Members of the Scientific Advisory Committee with their contact information. Dr. Pereira has studied immune responses to CMV infection and molecular biology of viral glycoproteins for over 25 years.
*Surviving Loss: The Woodcutter's Tale (it also available as a paperback on Amazon)
The afterward, written by a psychotherapist, seeks to help individuals understand the grieving process so they can return to a life with purpose and meaning. Further insight is provided by a mother who lost her 16-year-old daughter. She shares the ways in which she is trying to move forward to honor the memory of her child.
This message of hope enables readers to begin speaking of their own losses, whether by discussing the fairytale or identifying with the mother’s experience. The portion on understanding and coping with the natural process of grief gives individuals tools for healing.
Surviving Loss: A Woodcutter’s Tale is ideal for anyone who has experienced loss and provides professionals with an invaluable resource for assisting the bereaved.