Can You Post #1 Birth Defects Virus (congenital CMV) Prevention?

Can you help prevent the leaving viral cause of birth defects, congenital cytomegalovirus (CMV), by posting information on how a woman of childbearing age can protect their unborn children from this common yet little known disease that causes more birth defects than Down syndrome?

About 1 in 150 children is born with congenital CMV infection, and about 20% percent of those are permanently disabled by it.

Q. Who is at greater risk for contracting CMV?

A. According to the CDC, “Persons who work closely with children in settings, such as child care facilities, may be at greater risk of CMV infection than persons who do not work in such settings."

Data from a variety of day care center studies indicate that between 44 to 100% of two year olds at a single given time were shedding CMV.  Day-care workers are at greater risk according to the article, Cytomegalovirus as an occupational risk in daycare educators.

 

Q. Which women are most at risk for contracting CMV?

A. “75% of women with a primary infection during pregnancy acquire CMV from their own child under two years of age,” said Stuart Adler, M.D. 

Q. What is being done about this? In 2013, Utah passed a law requiring congenital CMV prevention education in places such as daycare centers and the testing of newborns for CMV if they fail their hearing screen. Last May, Connecticut's Governor Malloy signed a bill requiring newborns who fail a hearing test to be screened for congenital cytomegalovirus. (See photograph of Governor Malloy at the ceremonial bill signing--I'm holding a picture of my deceased daughter, Elizabeth). From a press release issued June 4, 2015, by the State Senate Democrats of the Connecticut General Assembly: "With bipartisan support, the legislature approved and the governor signed a bill that will help mitigate the devastating impact that this disease has on families. The bill requires that hospitals and other health care institutions test newborn infants for CMV if they fail a newborn hearing test. This will help parents intervene early and get their newborn child the help it needs."

Q. How can congenital CMV be prevented?

 

There are certain steps everyone can take to reduce their risk of exposure to CMV and other infection. http://www.cdc.gov/cmv/prevention.html

Preventing Congenital CMV Infection

Here are a few simple steps to take to avoid exposure to saliva and urine that might contain CMV (See the CDC website to learn more at: http://www.cdc.gov/cmv/transmission.html):

·         Wash your hands often with soap and water for 15-20 seconds, especially after

·         changing diapers

·         feeding a young child

·         wiping a young child’s nose or drool

·         handling children’s toys

·         Do not share food, drinks, or eating utensils used by young children

·         Do not put a child’s pacifier in your mouth

·         Do not share a toothbrush with a young child

·         Avoid contact with saliva when kissing a child

·         Clean toys, countertops, and other surfaces that come into contact with children’s urine or saliva

 Q. How many people know about congenital CMV?

A. Only 7% of  men and 13%  of women surveyed had heard of congenital CMV.

 

Q. Why haven’t most people heard of this leading cause of birth defects before?

A. Doctors don’t realize how prevalent it is. Fewer than half (44%) of OB/GYNs surveyed reported counseling their patients about preventing CMV infection. “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 “Washing our hands of the congenital cytomegalovirus disease epidemic.”

 

Q. Is this the “kitty litter” disease?

A. No, that is toxoplasmosis, which causes fewer birth defects than cCMV. Like toxoplasmosis, cCMV is preventable, but most women of childbearing age have never heard of the precautions to take.

Congenital CMV is the most common cause of nonhereditary sensorineural hearing loss in childhood. In addition to deafness, Congenital Cytomegalovirus (cCMV) causes mental retardation, liver disease, and cerebral palsy as a result of infection in pregnant women‎. According to the CDC, in the U.S.:

·         Every hour, congenital CMV causes one child to become disabled.

·         More than 5,000 children each year suffer permanent problems caused by congenital CMV.

With the exception of a few states like Utah, Texas and Hawaii that recently passed a bill requiring cytomegalovirus (CMV) prevention education in daycare centers, very few daycare centers provide education. (See Utah’s flyer for CMV prevention in daycare centers at:CMV What Childcare Providers Need to Know (English) | Lo qué los proveedores de cuidado infantil necesitan saber sobre CMV (Spanish).

My OB/GYNs didn’t tell me how to prevent congenital CMV, namely by avoiding kissing my toddler near the mouth or sharing food with her, until after my second daughter was born profoundly mentally and physically disabled by the disease. It was then that I received literature stating women who work in daycare, or have a young child in daycare, are at a higher risk for catching it as toddlers are the majority of carriers. While I was pregnant with Elizabeth, I not only had a toddler of my own, I was also running a licensed daycare center in my home. 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. Elizabeth died at age 16 during a seizure in 2006.

“We must commit to educating the public about cytomegalovirus so that we can potentially prevent the devastating consequences of this disease on our children," said Brenda K. Balch, MD, Connecticut's American Academy of Pediatrics Early Hearing Detection and Intervention Chapter Champion.

Q. Will it make a difference if women are educated on CMV prevention?

A. Yes, according to studies in the U.S. and France. Dr. Demmler-Harrison, Director, Congenital CMV Disease Research, Clinic & 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. "

"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," said Stuart Adler, M.D., Professor Emeritus of Pediatrics and Professor of Microbiology and Immunology, Virginia Commonwealth University. (See his article, "Prevention of Maternal-Fetal Transmission of Cytomegalovirus.")

The United States Senate had passed legislation designating the month of June as "National Congenital CMV Awareness Month," while recommending that “more effort be taken to counsel women of childbearing age of the effect this virus can have on their children.” (This occurred through the efforts of Stop CMV.)

There is no vaccine yet to prevent human cytomegalovirus (HCMV). One reason for the delay in successful development of a vaccine is “there has been insufficient education about the problem of HCMV infection…” Pharmaceutical companies need to know that a vaccine will be used because people know about the disease.

Click here for the CDC's flyer: What Women Should Know About Cytomegalovirus (CMV)

Thank you in advance for your help.

Lisa Saunders

Parent representative, Congenital CMV Foundation, and author of memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus)"

PO Box 389, Mystic, CT 06355, Lisasaunders42@gmail.com

You can access my presentation to Connecticut's Medical Assistance Program Oversight Council's Women’s Health Committee to explain cCMV and the required testing by clicking on my  PowerPoint uploaded to Google drive.

My cCMV blog: http://congenitalcmv.blogspot.com

Personal website: www.AuthorLisaSaunders.com

 

Need Speaker on Congenital Cytomegalovirus (CMV)?

I am Lisa Saunders, the parent representative of the Congenital CMV Foundation, which raises awareness about maternal testing for first infection during pregnancy, newborn testing, and the need to develop a vaccine. I am also the  author of the memoir, Anything But a Dog! The perfect pet for a girl with CMV (cytomegalovirus).

About 1 in 150 children is born with congenital CMV infection, and about 20% percent of those are permenently disabled by it. I have spoken to several organizations such as the  Center for Disease Control and Prevention and Siemens Healthcare Diagnostics about my daughter’s life with cCMV, and was recently instrumental in getting a law passed in Connecticut requiring testing for cCMV for infants who fail their required hearing screen. If a baby tests positive for cCMV, doctors can offer the antiviral that has shown to improve outcomes (brain size, hearing, etc.). My work on the Connecticut bill was featured in Cornell’s Alumni Magazine (Sept/Oct 2015) and was widely covered in the media (see News 8 at CT Capitol RE: CMV and below my signature for additional TV coverage and articles).

To learn how to stop the spread of CMV, see the CDC's website on cCMV (prevention includes careful handling of the saliva of toddlers) at: http://www.cdc.gov/cmv/index.html, or print this CDC flyer: CDC: CMV Prevention Flyer, www.congenitalcmv.org/CDCbrochure.pdf

The prevention education part of the Connecticut bill did not pass because it would cost the state $40,000 a year to educate the public about the disease. Perhaps you can help spread prevention awareness by posting tips on your website and/or thinking of another ways we can collaborate to stop this #1 viral cause of birth defects? If you need a speaker on the topic, I have included some information on my talks (with references) below my signature.

There is no vaccine yet to prevent congenital cytomegalovirus (cCMV), which causes more disabilities (hearing loss, cerebral palsy, learning disabilities) than Down syndrome or toxoplasmosis (the kitty litter disease). If more people knew about human cytomegalovirus (HCMV) not only would children be spared the suffering my daughter endured for 16 years until her death during a seizure, but one reason for the delay in successful development of a vaccine is “there has been insufficient education about the problem of HCMV infection…” Pharmaceutical companies need to know that a vaccine will be used because people know about the disease.
Upon the Connecticut bill passing, I presented to Connecticut's Medical Assistance Program Oversight Council's Women’s Health Committee to explain cCMV and the required testing.  Here is my PowerPoint uploaded to Google drive. Other presentations and speaker references are included below my signature.
If you are looking for a speaker, please contact me for my availability.
Sincerely,
Lisa Saunders
PO Box 389, Mystic, CT 06355
Lisasaunders42@gmail.com
My cCMV blog: http://congenitalcmv.blogspot.com
Personal website: www.AuthorLisaSaunders.com
PRESENTATIONS AND MEDIA COVERAGE:
Presentations and references include:  

• Congenital Cytomegalovirus Conferences (CDC, Atlanta, GA, 2008; San Francisco, CA, 2012; Salt Lake City, UT, 2014). References for all three conferences include:

1. Lenore Pereira, Ph.D., Founder of Congenital Cytomegalovirus Foundation, and Professor, Cell and Tissue Biology Department, University of California San Francisco. lenore.pereira@ucsf.edu, or visit www.congenitalcmv.org. The Congenital CMV Foundation raises awareness about maternal testing for first infection during pregnancy, newborn testing and the need to develop a vaccine.
2. Gail J Demmler-Harrison, MD, Professor, Pediatrics, Section Infectious Diseases, Baylor College of Medicine, Attending Physician, Infectious Diseases Service, Texas Children's Hospital, CMV Registry, CMV Research and CMV Clinic. Contact: 832-824-4330,gjdemmle@texaschildrens.org. The CMV Registry supports CMV research, disseminates information and provides parent support.
3. Michael Cannon, Ph.D. mrc7@cdc.gov, a research epidemiologist at the Centers for Disease Control and Prevention. Dr. Cannon is particularly interested in developing strategies to prevent congenital CMV infection through public awareness and education.

 

• Medical Assistance Program Oversight Council's Women’s Health Committee (July 13, 2015). References:

1. Richard Eighme, Clerk, Medical Assistance Program Oversight Council, (860) 240-0321, Richard.eighme@cga.ct.gov
2. Rep. Susan Johnson, Johnson@cga.ct.gov
3.  

• Siemens Healthcare Diagnostics (Fall 2010 webinar and my story published in their magazine). References:

1. Katherine Soreng, Ph.D., Director, Clinical and Scientific Marketing, katherine.soreng@siemens.com
2. Theresa Spence, M.B.A., Senior Marketing Manager, Disease State Marketing, Siemens Healthcare Diagnostics, Inc., theresa.m.spence@siemens.com 

• Infection Control Nurses of Connecticut (April 2013). Reference:

1. Kris Magnussen, KMagnussen@llhd.org

 

MEDIA COVERAGE ON MY WORK AGAINST CONGENITAL CMV

2015:

• Connecticut Magazine: Mystic Mom 'Overwhelmed' by Governor Signing Law on ‘Stealth Virus’ That Can Catch Pregnant Women Unaware

• CT Now: New Cytomegalovirus (CMV) Law in Connecticut
• Cornell Alumni Magazine: In Memory of Elizabeth: Her daughter's death from a preventable disability spurs Lisa Avazian Saunders '82 into action

• Clinical Advisor: Connecticut passes cytomegalovirus screening law for newborns 

• Fox CT: Moms Fight for CMV Law

• News 8 at CT Capitol RE: CMV

• CT Magazine June 2015 (One Mystic Mother is Trying to Raise Awareness of a Common Virus That Can Have Devastating Consequences for Pregnant Women)

• News 8: Preventing Congenital CMV During Pregnancy

2014

• Fox CT Dr & Mom
• CT NOW: Mommy Minute
• Health Watch: Dr. Brenda Balch, Lisa Saunders, and Cindy Barry discuss cCMV
• Mystic River Press: Saunders seeks help with CMV ‘silent virus’ prevention bill
• Hartford Courant: Mother Working to Protect Pregnant Moms From Dangerous Virus
• AP article went worldwide mentioning CT Senate failed to vote on CMV Bill: Silent virus a rare, dangerous risk for the unborn

2013

• Grace Magazine features Lisa Saunders, daughter Elizabeth & cCMV

 

2009

• Lisa on USA 9 News
• Times Herald Record: What every pregnant woman needs to know

FOR IMMEDIATE RELEASE

DATE: June 4, 2015

CONTACT: Lisa Saunders

Parent rep, Congenital CMV Foundation
PO Box 389, Mystic, CT 06355

Lisasaunders42@gmail.com

 

 

 Moms and Doctors Find Hope When Connecticut Becomes 2nd State to Pass Bill on 

#1 Viral Cause of Birth Defects

 

  

House Bill 5525 - An Act Concerning Cytomegalovirus: "A screening test for cytomegalovirus for newborns who fail a newborn hearing screening."

 

Mystic, Conn.—  Ever since Lisa Saunders, the parent representative of the Congenital Cytomegalovirus (CMV) Foundation, learned Utah became the first state to pass a bill on the leading viral cause of birth defects in 2013, she has been asking Connecticut to become the second. A CMV bill was passed by the House in 2014, but the Senate failed to vote on it before the end of the legislative session. Then it happened--in the 2015 legislative session, the bill finally became law after the Public Health Committee, House (watch Saunders' representative urge support), then Senate passed it, sending it onto Governor Malloy who signed House Bill 5525: "An Act Concerning Cytomegalovirus" on May 26, 2015.

From a press released issued June 4, 2015, by the State Senate Democrats of the Connecticut General Assembly: "With bipartisan support, the legislature approved and the governor signed a bill that will help mitigate the devastating impact that this disease has on families. The bill requires that hospitals and other health care institutions test newborn infants for CMV if they fail a newborn hearing test. This will help parents intervene early and get their newborn child the help it needs."

When Saunders and other parents whose children were disabled by congenital CMV, plus those in the medical community who supported the bill, learned the governor had signed the bill, they were ecstatic (see their Public Hearing Testimonies).

"This is a game-changing step forward in our ability to determine CMV causality and give parents a viable option for early treatment," said Scott R. Schoem, MD, FAAP, Director of Otolaryngology, Connecticut Children’s Medical Center.

Congenital CMV it is the most common cause of nonhereditary sensorineural hearing loss in childhood. In addition to deafness, Congenital Cytomegalovirus (cCMV) causes mental retardation, liver disease, and cerebral palsy as a result of infection in pregnant women‎. According to the CDC, in the U.S.:

• Every hour, congenital CMV causes one child to become disabled.

• About 1 in 750 children is born with or develops permanent problems due to congenital CMV infection.

• More than 5,000 children each year suffer permanent problems caused by congenital CMV.

Saunders, the author of memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus)," said, “My OB/GYNs didn’t tell me how to prevent congenital CMV, namely by avoiding kissing my toddler near the mouth or sharing food with her, until after my second daughter was born profoundly mentally and physically disabled by the disease. It was then that I received literature stating women who work in daycare, or have a young child in daycare, are at a higher risk for catching it as toddlers are the majority of carriers. While I was pregnant with Elizabeth, I not only had a toddler if my own, I was also running a licensed daycare center in my  home. 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.” Elizabeth died at age 16 during a seizure in 2006.

“We must commit to educating the public about cytomegalovirus so that we can potentially prevent the devastating consequences of this disease on our children," said Brenda K. Balch, MD, Connecticut's American Academy of Pediatrics Early Hearing Detection and Intervention Chapter Champion.

Ronda Rudd Menlove, Ph.D., the representative responsible for passing and enacting the bill in Utah, and co-founder of the Utah CMV Council, said, ”The Connecticut legislation extends important education and protection to families and infants from the devastating effects of CMV. The impact on lives and the reduction of state dollars needed to serve those impaired by CMV is immeasurable. This is an excellent example of the power of an individual in the political process. We in Utah applaud Connecticut lawmakers for listening to Lisa Saunders and acting to protect all children and families." 

Menlove's daughter, Sara Menlove Doutre, co-founder of the Utah CMV Council, has a daughter affected by congenital CMV. Doutre, a special education and early intervention policy consultant, is encouraged by the number of states pursuing CMV legislation and believes that number will continue to grow. She said: "In 2013, one state, Utah, created a CMV awareness and screening program. In 2015, five states proposed legislation. Connecticut follows Utah as the second state to enact legislation and will be followed by Texas and Hawaii, where bills await governors' signatures."

Children born with congenital CMV can be treated if diagnosed early. “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 of Texas, Director, Congenital CMV Disease Research, Clinic and Registry. According to the article, Valganciclovir for Symptomatic Congenital Cytomegalovirus Disease, “Treated infants had fewer developmental delays…than untreated infants”

 

Stephanie Browning McVicar, Au.D., CCC-A, Utah Department of Health, Director, Early Hearing Detection and Intervention / Cytomegalovirus Public Health Initiative, said, "I am so excited that another state is bringing attention to congenital cytomegalovirus.  Utah is looking forward to partnering with Connecticut in their upcoming endeavors." In addition to testing newborns for CMV if they fail their hearing screen, Utah’s H.B 81 requires CMV prevention brochures for doctors, parents, and daycare providers.

The United States Senate had passed legislation designating the month of June as "National Congenital CMV Awareness Month," while recommending that “more effort be taken to counsel women of childbearing age of the effect this virus can have on their children.” (This occurred through the efforts of Stop CMV.)

To learn more about congenital cytomegalovirus and how to prevent it, visit the Centers for Disease Control and Prevention at:http://www.cdc.gov/cmv/index.html. 

You can print CDC's flyer: What Women Should Know About Cytomegalovirus (CMV)

To see the answers to the most common questions, such as why OB/GYNs don't routinely warn their patients about congenital CMV, why there isn't a vaccine yet, what percentage of people know how to prevent CMV, and how much it costs to care for children disabled by congenital CMV, download the One Page cCMV Fact Sheet plus Bibliography by Lisa Saunders. 

For a detailed presentation on the disease and testing for it, print the presentation,"Congenital CMV 101: From Prevention to Treatment," by Dr. Michael Cannon of the Centers for Disease Control and Prevention (CDC), by clicking on: cCMV 101 Webinar Slides [PDF]. You can hear watch/hear his presentation with the slides at: cCMV 101 Webinar Recording

###

 

Lisa Saunders of Mystic, Connecticut, is author of memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus)," and the parent representative of the Congenital Cytomegalovirus Foundation, which raises awareness about maternal testing for first infection during pregnancy, newborn testing and the need to develop a vaccine (LenorePereira, Ph.D., Professor, Cell and Tissue Biology Department, University of California San Francisco, is the Foundation founder). 

  

Families with CMV-Disabled Children Invited to CT Governor's Office for Ceremonial Bill Signing

Ceremonial bill signing for Public Act 15-10: An Act Concerning Cytomegalovirus at the Office of the Governor in Hartford, Conn., on July 28. Left to right: Jane Baird, Government Relations, Connecticut Children’s Medical Center; Dr. Wallis Molchen, Chief Resident, Connecticut Children’s Medical Center; Jane Brancifort, Deputy Commissioner, Department of Public Health; State Representative John Hampton; Dr. Brenda K. Balch, American Academy of Pediatrics Early Hearing Detection & Intervention Chapter Champion; Nancy Wyman, Lt. Governor; Lisa Saunders, parent representative, Congenital Cytomegalovirus Foundation, holding a picture of her deceased daughter, Elizabeth (Lizzie); State Representative Kevin Ryan; Governor Dannel P. Malloy; Senator Cathy Osten; Ken Hiscoe, Pfizer, Government Relations; Jarred and his mother, Melvette Ruffin; DeVaughn Ward, Liaison, Department of Public Health; and Kinson Perry, lobbyist at Rome, Smith and Lutz.

FOR IMMEDIATE RELEASE

CONTACT: Lisa Saunders

Parent representative

Congenital Cytomegalovirus Foundation

Lisasaunders42@gmail.com

  

Mothers and Doctors Find Hope for Babies When Connecticut Governor Malloy Signed Law on #1 viral cause of birth defects

Public Act No. 15-10:

"An Act Concerning Cytomegalovirus"

Mystic, Conn.— Governor Dannel P. Malloy invited families of children disabled by congenital cytomegalovirus (CMV), and doctors who work with CMV, to a ceremonial bill signing for Public Act No. 15-10: "An Act Concerning Cytomegalovirus" at the Office of the Governor in Hartford on July 28.(See: https://www.cga.ct.gov/2015/ACT/PA/2015PA-00010-R00HB-05525-PA.htm)

"With bipartisan support, the legislature approved and the governor signed a bill that will help mitigate the devastating impact that this disease has on families. The bill requires that hospitals and other health care institutions test newborn infants for CMV if they fail a newborn hearing test. This will help parents intervene early and get their newborn child the help it needs," stated the State Senate Democrats of the Connecticut General Assembly in a press release.

"This is a game-changing step forward in our ability to determine CMV causality and give parents a viable option for early treatment," said Scott R. Schoem, MD, FAAP, Director of Otolaryngology, Connecticut Children’s Medical Center.

Congenital CMV is the most common cause of nonhereditary sensorineural hearing loss in childhood. In addition to deafness, Congenital Cytomegalovirus (cCMV) causes mental retardation, liver disease, and cerebral palsy as a result of infection in pregnant women‎.

Melvette Ruffin of Stamford brought her 26-year old son, Jarred, in his wheelchair to the ceremonial signing on July 28. When Jarred was born severely disabled by congenital CMV in 1989, Melvette had never heard of the virus or how she could have prevented it. “Meeting Governor Malloy, and hearing him talk about putting the CMV law into motion, was a real thrill moment for me. Having a child with multiple disabilities is hard. For twenty six years, I felt alone watching my child suffer from this disease and I didn’t know how to prevent this from happening to other families. But being at this signing with mother Lisa Saunders, whose daughter was also born severely disabled by CMV in 1989, and meeting Dr. Brenda Balch and law makers who really care, made me feel change is finally coming. Hearing the governor call it ‘Lizzie’s Bill’ in memory of Lisa’s daughter made this all so personal.”

According to the CDC, in the U.S.:

• Every hour, congenital CMV causes one child to become disabled.
• About 1 in 750 children is born with or develops permanent problems due to congenital CMV infection.
• More than 5,000 children each year suffer permanent problems caused by congenital CMV.

Ever since Lisa Saunders of Mystic, the parent representative of the Congenital Cytomegalovirus Foundation, and other parents with children disabled by the virus, learned the State of Utah passed a CMV bill in 2013, they, along with several in the medical community, have been trying to get the State of Connecticut to follow suit. They spent the 2014 and 2015 legislative sessions educating the Connecticut House and Senate about this leading viral cause of birth defects, which causes more disabilities than Down syndrome. 

“We must commit to educating the public about cytomegalovirus so that we can potentially prevent the devastating consequences of this disease on our children," said Brenda K. Balch, MD, American Academy of Pediatrics Early Hearing Detection & Intervention Chapter Champion.

Saunders said, “My OB/GYNs didn’t tell me how to prevent congenital CMV until after my daughter was born. Then I received literature stating women who work in daycare, or have a young child in daycare, are at a higher risk for catching it as toddlers are the majority of carriers. 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.” Elizabeth was severely mentally and physically disabled, and died at age 16 during a seizure in 2006. Saunders wrote what it was like raising Elizabeth alongside her tomboy sister and a series of dysfunctional pets in her light-hearted memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus).

Casey Famigletti of New Canaan, whose daughter was also born with congenital CMV, stated in her public hearing testimony to the Public Health Committee on Feb. 20, 2015: "What has been most frustrating to me is the fact that I was informed about not eating soft cheeses and deli meat (to prevent listeria), to not clean kitty litter boxes (to prevent toxoplasmosis), to avoid alcohol (to prevent fetal alcohol syndrome) and to take an adequate amount of folic acid (to prevent spinal bifida). If, according to the CDC, 1 in 150 children is born with congenital CMV, making it more prevalent than everything else I was informed of, why was I not informed on the simple step to reduce my risk of acquiring and passing along such a prevalent, preventable and destructive virus?" 

Children born with congenital CMV can be treated if diagnosed early. “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.

When CMV bill supporters in Connecticut and across the country learned Governor Malloy signed House Bill 5525: "An Act Concerning Cytomegalovirus” on May 26, they were ecstatic.

“I am so excited that another state is bringing attention to congenital cytomegalovirus.  Utah is looking forward to partnering with Connecticut in their upcoming endeavors," said Stephanie Browning McVicar, Au.D., CCC-A, Utah Department of Health, Director, Early Hearing Detection and Intervention / Cytomegalovirus Public Health Initiative. In addition to testing newborns for CMV if they fail their hearing screen, Utah’s H.B 81 requires CMV prevention brochures for doctors, parents, and daycare providers.

To learn more about congenital cytomegalovirus and how to prevent it, visit the Centers for Disease Control and Prevention at: http://www.cdc.gov/cmv/index.html

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Dr. Brenda K. Balch and mothers Casey Famigletti and Lisa Saunders testified in favor of House Bill 5525 in Hartford, Conn., on Feb. 20, 2015. (Photograph by Suzanne Janso.)

From left to right: 

Brenda K. Balch, MD, Connecticut American Academy of Pediatrics Early Hearing Detection & Intervention Chapter Champion. She has a strong interest because congenital CMV is a major cause of hearing loss. Dr. Balch lives in Mystic, CT. (Sent Testimony to CT’s HB 5525.)

Casey Famigletti, CMV mom living in New Canaan, CT. (Sent Testimony to CT's HB5525.)

Lisa Saunders of Mystic, Connecticut, is author of memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus)," and the parent representative of the Congenital Cytomegalovirus Foundation, which raises awareness about maternal testing for first infection during pregnancy, newborn testing and the need to develop a vaccine. LenorePereira, Ph.D., Professor, Cell and Tissue Biology Department, University of California San Francisco, is the Foundation founder. (Lisa Sent Testimony to CT's HB5525.)

Watch Rep. Bumgardner urges support for cytomegalovirus screening