WHAT YOU NEED TO KNOW ABOUT CONGENITAL CYTOMEGALOVIRUS (CMV)
I am the parent representative of the Congenital Cytomegalovirus (CMV) Foundation. I am not a doctor—just a former day care provider who didn’t learn about CMV prevention until after my daughter Elizabeth was born with microcephaly (small, damaged brain) in 1989. My story is told in my memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV.
Cytomegalovirus (CMV) is carried by a high percentage of apparently healthy toddlers. It is found in bodily fluids such as saliva and urine and can live for up to 30 minutes on a toy. It is spread via contact with bodily fluids, and then by contacting your own eyes, nose or mouth. It is of concern to women of childbearing age because the virus can lead to complications in their baby's development if they are pregnant while infected. It can also be dangerous to people whose immune systems are compromised.
Women who care for children are at higher risk for contracting CMV. I not only had a toddler of my own when I was pregnant with Elizabeth, but I ran a licensed daycare center in my home in Maryland where I was living at the time. According to studies done in the U.S. and France, I could have greatly reduced my risk of contracting CMV if I had learned and followed the prescribed precautions. The Centers for Disease Control and Prevention (CDC) states: “The risk of getting cytomegalovirus (CMV) through casual contact is very small. The virus is generally passed from infected people to others through direct contact with body fluids, such as urine, saliva, or breast milk. CMV is sexually transmitted. It can also be spread through transplanted organs and blood transfusions.”
To best protect your unborn, please consult your healthcare professionals and other resources such as the CDC’s website.
What is cytomegalovirus (CMV)?
• CMV, or cytomegalovirus (s?-to-MEG-a-lo-v?-rus), is a common virus.
• Most infections with CMV are “silent,” meaning most people who are infected with CMV have no signs or symptoms.
• Between 50% and 80% of adults in the U.S. are infected with CMV by 40 years of age.
Who does CMV harm?
• CMV can cause disease in unborn babies.
• CMV may cause severe and occasionally life-threatening disease in immunocompromised persons (meaning people with weakened immune systems), such as:
o Organ and bone marrow transplant recipients.
o Cancer patients.
o Patients receiving immunosuppressive drugs
o HIV-infected patients
Can you treat congenital CMV?
According to Dr. Demmler-Harrison, Director, Congenital CMV Disease Research, Clinic & Registry, “CMV infection in newborns can be treated with ganciclovir by IV or valganciclovir by oral route -- treatment reduces hearing loss progression and improves growth and head size/brain growth and improves developmental milestones.”
Why don’t more people know about congenital CMV?
"Despite being the leading cause of mental retardation and disability in children, there are currently no national public awareness campaigns to educate expecting mothers about congenital CMV."—Clinical Advisor (2014).
“The virtual absence of a prevention message has been due, in part, to the low profile of congenital CMV. Infection is usually asymptomatic in both mother and infant, and when symptoms do occur, they are non-specific, so most CMV infections go undiagnosed,” according to the article, “Washing our hands of the congenital cytomegalovirus disease epidemic.” (BMC Public Health 2005, 5:70)
The U.S. Senate passed legislation in 2014 recommending that “more effort be taken to counsel women of childbearing age of the effect this virus can have on their children” because "The incidence of children born with congenital cytomegalovirus can be greatly reduced with public education and awareness." The month of June was designated as "National Congenital CMV Awareness Month."
What are the 13 things childcare workers need to know or do about CMV?
1. The article, ”Cytomegalovirus as an occupational risk in daycare educators,” states: "studies in industrialized countries have confirmed that children attending daycare have higher excretion rates of CMV than children not attending day-care and that horizontal transmission is common between children in daycare and their adult contacts"
2. The article, "Group day care and cytomegaloviral infections of mothers and children," states that between 44 to 100% of two-year-olds at a single given time were shedding CMV. (https://www.ncbi.nlm.nih.gov/pubmed/3018892)
3. “Pregnant childcare employees should be informed about CMV, assess their risk by serologic testing or avoid if possible caring for children less than 2 years age for the duration of pregnancy," states Stuart P. Adler M.D. of the CMV Research Foundation Inc. in his article, "Prevention of Maternal–Fetal Transmission of Cytomegalovirus."
4. CMV is the leading viral cause of birth defects. It causes mental retardation, liver disease, cerebral palsy, and deafness, causing more disabilities than Down syndrome, as a result of infection in pregnant women.
5. According to the Centers for Disease Control and Prevention (CDC), "People who care for or work closely with young children may be at greater risk of CMV infection than other people because CMV infection is common among young children..."
6. Daycare.com provides helpful CMV prevention tips and advice for daycare workers at: https://www.daycare.com/fastfacts/illness/cytomegalovirus.html
7. The National CMV Foundation provides CMV prevention tips for "Care Giver Health" at: https://www.nationalcmv.org/cmv-prevention/caregiver-health.aspx
8. Will it make a difference if women are educated on CMV prevention?
Yes, according to two studies in the U.S, "Prevention of child-to-mother transmission of cytomegalovirus among pregnant women" (https://www.ncbi.nlm.nih.gov/pubmed/15480372) and "Prevention of Primary Cytomegalovirus Infection in Pregnancy" (http://www.ebiomedicine.com/article/S2352-3964(15)30097-9/abstract) plus one in France
Gail J Demmler-Harrison, MD, Director, Congenital CMV Disease Research, Clinic and Registry, states: “Studies have shown that women who know they are CMV seronegative, know they are pregnant, and know about their toddler's CMV shedding are the most likely to prevent CMV transmission and reduce their risk from over 50 percent during pregnancy to a risk of less than 5 percent during pregnancy. It is not likely that isolated instances of exposure to saliva or drool will result in transmission. Most studies suggest prolonged repeated exposures over time are important for CMV transmission.”
"For seronegative pregnant women who are at high risk because of exposure to a young child in the home or in large group childcare, hygienic precautions are simple, inexpensive, and highly effective." (Adler, S.P., 2015)
9. Present educational material for day care providers. Utah, the first state to require congenital CMV prevention education (law passed in 2013), provides this brochure for childcare providers: http://health.utah.gov/cshcn/pdf/CMV/CMV%20What%20Childcare%20Providers%20Need%20to%20know.pdf The following link is to a funny video staring, "Rhonda Rhinovirus," a germ who loves to tell stories about how they like to travel. It includes information on CMV (in the herpesvirus family, like chicken pox). It was produced by the worldwide LDS church as a result of Utah's request to provide CMV prevention education. Watch: https://www.lds.org/callings/church-safety-and-health/training-and-video-resources/communicable-diseases?lang=eng
10. "There are pregnant teachers and other care givers at our school who work closely with children known to have CMV infection. For their safety, should these employees be relieved from their duties in caring for these children?"
According to the National Congenital CMV Disease Registry: “Changing the duties of a teacher or care giver from children known to have CMV infection to other children may not reduce their risk of acquiring CMV. It is a common virus in all children. In fact, studies reveal that between 30 and 80% of children between the ages of 1-3 years of age who attend some form of group care are excreting CMV. In this setting transmission of CMV is usually transmitted from child-to-child by direct contact with bodily fluids such as saliva or urine. It also may be transmitted to care givers. Therefore it is wise for care givers in this type of setting to be aware of CMV and consider knowing their CMV antibody status. If results are negative, they are susceptible to catching CMV for the first time and it is a potential risk to the fetus if they are pregnant. On the other hand, if results of a CMV antibody titer (IgG) is positive, they have already acquired CMV at some time in their life and their risk is greatly reduced. Additionally, it is important for all care givers to practice good hygienic measures. This is achieved by hand washing with soap and water, especially after diaper changes and any contact with a child's bodily fluids. Kissing and sharing food or drink also should be avoided.”
11. Ask your state's health department webpage to include congenital CMV prevention. For example, Connecticut's Health Department provides the following information: http://www.ct.gov/dph/cwp/view.asp?a=3138&q=527824.
12. Ask the people responsible for providing your state’s day care licensing training to explain increased risk of contracting CMV for childcare workers and provide CMV prevention brochures and posters for day care centers.
13. Teach children and their families table-setting and CMV prevention with free, downloadable “color-me-in" placemats that includes a germ prevention tip from Miss Cup who insists no one share her. The placemats provide space for including your own information when reproducing them. Find the placemat on my website, www.AuthorLisaSaunders.com, then click on the button, “Books & Play” then on "Once Upon a Placemat: A Table Setting Tale." I include a short video explaining my placemat characters.
Is CMV the “kitty litter” disease?
No, that is toxoplasmosis. (Lopez, Adriana, et al., 2000). Like toxoplasmosis, cCMV is preventable, but most women of childbearing age have never heard of the precautions to take.
How many people know about congenital CMV?
Only 7% of men and 13% of women surveyed had heard of congenital CMV. (Cannon MJ, Westbrook K, Levis D, Schleiss MR, Thackeray R, Pass RF, 2012)
What about a vaccine against CMV?
Researchers have been working on a vaccine against HCMV (human cytomegalovirus) for years.
One reason for delay in successful development is “there has been insufficient education about the problem of HCMV infection…” (Schleiss, M. R., 2008). Pharmaceutical companies need to know that a vaccine will be used because people know about the disease.
Dr. Gail J. Demmler-Harrison states in her article, “40 Years Is Long Enough!” that “Despite its ubiquity, CMV remains relatively poorly understood. More studies on the epidemiology, virology, and immunology of CMV infections is needed to help define correlates of immunity for protection of the placenta and fetus to protect against congenital CMV infection, to expand our limited understanding of the viral antigens important for protective antibodies, and to solve the conundrum of lifelong CMV persistence in apparently immune hosts and the ability of CMV to reinfect individuals with apparent immunity.”
Can you treat congenital CMV?
Antiviral treatment is indicated for some infants. “CMV infection in newborns can be treated with ganciclovir by IV or valganciclovir by oral route -- treatment reduces hearing loss progression and improves growth and head size/brain growth and improves developmental milestones,” says Dr. Demmler-Harrison, Director, Congenital CMV Disease Research, Clinic & Registry.
BIBLIOGRAPHY or FURTHER reading
Adler SP, Finney JW, Manganello AM, Best AM. (2004, October). Prevention of child-to-mother transmission of cytomegalovirus among pregnant women. Retrieved from National Center for Biotechnology Information: http://www.ncbi.nlm.nih.gov/pubmed/15480372
Adler, S. P. (2015, September). Prevention of Maternal–Fetal Transmission of Cytomegalovirus. Volume 2, Issue 9, Pages 1027–1028. BioMedicine. Retrieved November 9, 2016, from http://www.ebiomedicine.com/article/S2352-3964(15)30098-0/fulltext
Adler, Stuart, MD, Emeritus Professor of Pediatrics and Chairman, Division of Infectious Disease. (2014, Feb. 28). Public Hearing Testimony, Raised H.B. No. 5147 . Retrieved from Connecticut General Assembly: http://www.cga.ct.gov/2014/PHdata/Tmy/2014HB-05147-R000228-Stuart%20Adler,%20Emeritus%20Professor%20of%20Pediatrics%20and%20Chairman,%20Division%20of%20Infectious%20Disease-TMY.PDF
Armstrong, Farah,President and Founder, Maddie's Mission. (2014, Feb. 28). Public Hearing Testimony, Raised H.B. No. 5147 . Retrieved from Connecticut General Assembly : http://www.cga.ct.gov/2014/PHdata/Tmy/2014HB-05147-R000228-Farah,%20Armstrong-TMY.PDF
Arvin, A. et. al., . (2004). Vaccine Development to Prevent Cytomegalovirus Disease: Report from the National Vaccine Advisory Committee. Retrieved from Oxford Journals: http://cid.oxfordjournals.org/content/39/2/233.long
Bailey, Jenny Meeden, Texas, baby first in Houston to receive ganciclovir treatment. (2014, Feb. 28). Public Hearing Testimony, Raised H.B. No. 5147. Retrieved from Connecticut General Assembly: http://www.cga.ct.gov/2014/PHdata/Tmy/2014HB-05147-R000228-Jenny%20Meeden%20Bailey-TMY.PDF
Balch, Brenda K., MD. (2015, February 20). HB 5525. Retrieved from Connecticut General Assembly: http://www.cga.ct.gov/2015/PHdata/Tmy/2015HB-05525-R000220-Brenda%20Kinsella%20Balch,%20MD.%20AAP%20Connecticut%20Chapter%20Champion%20for%20the%20Early%20Hearing%20Detection%20and%20Intervention-TMY.PDF
Blazek, Nicole, Senior Clinical Content Editor. (2014, June 21). Educate pregnant women to prevent congenital CMV. Retrieved Reference: 1.Pina AL. “Breaking the Silence About Congenital CMV.” Presented at: AAPN 2014. Jun 17-22; Nashville, Tenn., from The Clinical Advisor: http://www.clinicaladvisor.com/educate-pregnant-women-to-prevent-congenital-cmv/article/357115/
Cannon MJ, Westbrook K, Levis D, Schleiss MR, Thackeray R, Pass RF. . (2012, May). Awareness of and behaviors related to child-to-mother transmission of cytomegalovirus. Retrieved January 9, 2015, from National Center for Biotechnology Information, U.S. National Library of Medicine : http://www.ncbi.nlm.nih.gov/pubmed/22465669
Cannon, Michael J.; Davis, Katherine Finn. (2005, June 20). Washing our hands of the congenital cytomegalovirus disease epidemic. Retrieved from BMC Public Health: http://www.biomedcentral.com/1471-2458/5/70
Carlson, Amanda, MD; Norwitz, Errol R MD, PhD; Stiller, Robert J , MD. (Fall 2010). Cytomegalovirus Infection in Pregnancy: Should All Women Be Screened? . Retrieved from National Center for Biotechnology Information : http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046747/
Centers for Disease Control and Prevention. (n.d.). Retrieved from Congenital CMV Infection Trends and Statistics: http://www.cdc.gov/cmv/trends-stats.html
Centers for Disease Control and Prevention (CDC). (n.d.). Cytomegalovirus (CMV) and Congenital CMV Infection. Retrieved from Centers for Disease Control and Prevention (CDC): http://www.cdc.gov/cmv/index.html
Centers for Disease Control and Prevention (CDC). (n.d.). Infant Health. Retrieved from Centers for Disease Control and Prevention (CDC): http://www.cdc.gov/nchs/fastats/infant-health.htm
Centers for Disease Control and Prevention (CDC). (n.d.). State and Territorial Data. Retrieved from Centers for Disease Control and Prevention (CDC): http://www.cdc.gov/nchs/fastats/state-and-territorial-data.htm
Children's Hearing and Speech Services. (n.d.). Retrieved from Utah Department of Health: http://www.health.utah.gov/cshcn/CHSS/CMV.html
Cody, S. (2015, May 6). CT Now. Retrieved from CT Moms Fight for CMV Legislation : "Connecticut Moms Fight for CMV Legislation":http://www.ctnow.com/family/ctnow-ct-moms-fight-for-cmv-legislation-20150505,0,3850658.column
Cody, S. (2015, May 27). New law in Connecticut to fight number one viral cause of birth defects. Retrieved from Fox CT: http://foxct.com/2015/05/27/new-law-in-connecticut-to-fight-number-one-viral-cause-of-birth-defects/
Congenital Cytomegalovirus Infection Time To Test Newborns. (2014, July 1). Retrieved December 6, 2014, from ENT Today: http://www.enttoday.org/article/congenital-cytomegalovirus-infection-time-to-test-newborns/
Cytomegalovirus (CMV) education bill on hold for now. (2014, May 8). Retrieved from Fox CT: http://foxct.com/2014/05/08/cytomegalovirus-cmv-education-bill-on-hold-for-now/
Cytomegalovirus-CMV: H.B. 81 (2013) Public Health Initiative in conjunction with the Utah Department of Health. (n.d.). Retrieved from Utah Department of Health: http://www.health.utah.gov/cshcn/PDF/CMV%20Utah%20Flyer.pdf
Demmler-Harrison,Gail, MD, Director, Congenital CMV Disease Registry and Research Program. (2015, Feb. 20). Public Hearing Testimony, Raised H.B. No. 5525. Retrieved from Connectictut General Assembly: http://www.cga.ct.gov/2015/PHdata/Tmy/2015HB-05525-R000220-Gail%20Demmler%20Harrison,%20MD-TMY.PDF
Demmler-Harrison,Gail, (2016, Nov. 1). 40 Years Is Long Enough! The Journal of Infectious Diseases, pp. 1297-1299. Retrieved from https://media.bcm.edu/documents/2016/ca/2016.demmler-harrison-40-years-is-long-enough-j-infect-dis..pdf
Doutre, Sara, co-founder, Utah CMV Council; Menlove,Ronda, Utah House of Representatives,. (n.d.). Retrieved from Utah CMV Council: http://www.utahcmvcouncil.org/about-us/
Goderis, Julie, MD, et al. (2014, October 27). Hearing Loss and Congenital CMV Infection: A Systematic Review. Retrieved from Pediatrics: http://pediatrics.aappublications.org/content/early/2014/10/21/peds.2014-1173.abstract#aff-1
Greenlee, Janelle, President and Founder, Stop CMV. (2014, Feb. 28). Public Hearing Testimony, Raised H.B. No. 5147 . Retrieved from Connecticut General Assembly: http://www.cga.ct.gov/2014/PHdata/Tmy/2014HB-05147-R000228-Janelle%20Greenlee,%20President%20and%20Founder,%20Stop%20CMV-TMY.PDF
H.B. 81 Second Substitute Cytomegalovirus Public Health Initiative. (2013 General Session). Retrieved from Utah State Legislature: http://le.utah.gov/~2013/bills/static/hb0081.html
Joseph, MSc, Serene A, et al. (2006, Sept). Cytomegalovirus as an occupational risk in daycare educators. Retrieved from PMC: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2528629/
Kimberlin, David W., M.D., et al. (2015, March 5). Valganciclovir for Symptomatic Congenital Cytomegalovirus Disease. Retrieved from The New Enland Journal of Medicine: http://www.nejm.org/doi/full/10.1056/NEJMoa1404599
Knowledge and Awareness of Congenital Cytomegalovirus Among Women. (2006, December 28). Retrieved from National Center for Biotechnology Information: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1779612/
Knowledge and Practices of Obstetricians and Gynecologists Regarding Cytomegalovirus Infection During Pregnancy --- United States, 2007. (n.d.). Retrieved from Centers for Disease Control and Prevntion (CDC): http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5703a2.htm
Lopez, Adriana, M.H.S., et al. (n.d.). Preventing Congenital Toxoplasmosis . Retrieved February 7, 2015, from CDC: http://www.cdc.gov/mmwr/preview/mmwrhtml/rr4902a5.htm
Maminta, J. (2015, March 3). Mystic mom raising awareness about potentially deadly virus. Retrieved from News 8: http://wtnh.com/2015/03/03/mystic-mom-raising-awareness-about-potentially-deadly-virus/
Mother on a mission to stop birth defects. (2014, April 28). Retrieved from Fox CT : http://foxct.com/2014/04/28/mother-on-a-mission-to-stop-birth-defects/
National Congenital CMV Disease Registry . (n.d.). Retrieved from Baylor College of Medicine: https://www.bcm.edu/pedi/infect/cmv/
Ofgang, E. (2015, June). Mystic Mom 'Overwhelmed' by Governor Signing Law on ‘Stealth Virus’ That Can Catch Pregnant Women Unaware. Retrieved from Connecticut Magazine: http://www.connecticutmag.com/Blog/Health-Wellness/February-2015/Mystic-Mom-Raises-Awareness-of-Stealth-Virus-That-Can-Catch-Pregnant-Women-Unawares/
Pass RF, Hutto C. (1986, Jul-Aug 8). Group day care and cytomegaloviral infections of mothers and children. Retrieved from National Center for Biotechnology Information: http://www.ncbi.nlm.nih.gov/pubmed/3018892
Pereira, Lenore, PhD, Founder, Congenital CMV Foundation. (n.d.). Retrieved from Congenital CMV Foundation: http://www.congenitalcmv.org/foundation.htm
Preventing Congenital CMV During Pregnancy. (2015, Feb 9). Retrieved Feb 2015, 17, from News 8's Connecticut Style: http://wtnh.com/2015/02/09/preventing-congenital-cmv-during-pregnancy/
Saunders, L. (2009). Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus). Retrieved from http://www.amazon.com/Anything-But-Dog-Congenital-Cytomegalovirus/dp/1588329968/ref=sr_1_1?s=books&ie=UTF8&qid=1340644532&sr=1-1&keywords=anything+but+a+dog+lisa+saunders
Saunders, L. (2014, April 28). Parent representative, Congenital Cytomegalovirus Foundation, and Dr. Brenda Balch of Mystic, CT. Fox CT: Mommy Minute. (S. Cody, Interviewer) https://www.youtube.com/watch?v=4lT2GpwzaMU&feature=youtu.be. Retrieved from Youtube.
Saunders, Lisa, Parent Representative, Congenital CMV Foundation. (2014, Feb. 28). Public Hearing Testimony, Raised H.B. No. 5147. Retrieved from Connecictut General Assembly: http://www.cga.ct.gov/2014/PHdata/Tmy/2014HB-05147-R000228-Lisa%20Saunders,%20Parent%20Representative,%20Congenital%20CMV%20Foundation-TMY.PDF
Schleiss, M. R. (2008). Cytomegalovirus Vaccine Development. Retrieved Januarary 14, 2015, from US National Library of Medicine: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2831992/
Shapiro, Eugene, M.D., Professor of Pediatrics, Epidemiology and Investigative Medicine, Yale University. (2014, Feb. 28). Public Hearing Testimony, H.B. No. 5147. Retrieved from Connecticut General Assembly: http://www.cga.ct.gov/2014/PHdata/Tmy/2014HB-05147-R000228-Eugene%20Shapiro,%20M.D.,%20Professor%20of%20Pediatrics,%20Epidermiology%20and%20Investigative%20Medicine,%20Yale%20University-TMY.PDF
Soren Gantt, MD, PhD, MPH1,2,3; Francois Dionne, PhD4; Fred K. Kozak, MD3,5; et al. (2016, October 10). Cost-effectiveness of Universal and Targeted Newborn Screening for Congenital Cytomegalovirus Infection. Retrieved from http://jamanetwork.com/journals/jamapediatrics/article-abstract/2557388
Tanner, L. (2014, May 17). Silent virus a rare, dangerous risk for the unborn. Retrieved from Associated Press: http://bigstory.ap.org/article/silent-virus-rare-dangerous-risk-unborn
Vaccines for the 21st Century: A Tool for Decisionmaking--CMV. (1999, March 1). Retrieved from Institute of Medicine: http://www.iom.edu/Reports/1999/Vaccines-for-the-21st-Century-A-Tool-for-Decisionmaking.aspx
Vauloup-Fellous,Christelle; Picone,Olivie; Cordier,Anne-Gaëlle; Parent-du-Châtelet,Isabelle;Senat,Marie-Victoire; Frydman,René; Grangeot-Keros, Liliane . (December 2009). Does hygiene counseling have an impact on the rate of CMV primary infection during pregnancy. Retrieved from Jounal of Clinical Virology: http://www.journalofclinicalvirology.com/article/S1386-6532(09)00419-3/abstract
What Childcare Providers Need to Know about CMV. (n.d.). Retrieved Feb 17, 2015, from Utah Department of Health, Children with Special Healthcare Needs, Children's Hearing and Speech Services: http://health.utah.gov/cshcn/pdf/CMV/CMV%20What%20Childcare%20Providers%20Need%20to%20know.pdf.
What Women Should Know About Cytomegalovirus (CMV). (n.d.). Retrieved from Congenital Cytomegalovirus Foundation: http://congenitalcmv.org/CDCbrochure.pdf