To the Media: Stop #1 Birth Defects Virus

I am hoping you would reach your audience with information that will spare children from the leading viral cause of birth defects, congenital cytomegalovirus, that causes more disabilities than Down syndrome. To learn more about this #1 birth defects virus and how it can be prevented by the careful handling of saliva (particularly from toddlers), visit the CDC's Web page: http://www.cdc.gov/cmv/index.html

 

I am happy to speak to your audience about how they can prevent this disease. I am the parent representative of the Congenital Cytomegalovirus (CMV) Foundation (http://www.congenitalcmv.org/) and author of the memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV," published by Unlimited Publishing (http://www.amazon.com/Anything-But-Dog-Congenital-Cytomegalovirus/dp/1588329968).

Until OB/GYNs make it a standard practice of care to warn women how to prevent cytomegalovirus, please reach your audience to help prevent over 5,000 babies a year in the U.S. from suffering this disease.

Utah passed a bill in 2013 requiring its Health Department to educate the public--Passed bill: Utah’s H.B. 81. I tried to get similar bill passed in Connecticut in 2014. It passed the Public Health Committee and House of Representatives, but the Senate failed to voted on it by the end of the legislative session. This is my letter to Connecticut for 2015: From Lisa to CT Politicians.

I work with the CDC and other medical professionals and can give you their contact information.

In 2014, Connecticut media featured my work to prevent others from suffering my daughter's disabilities and death from the preventable virus. Links to my local media coverage include:
Fox CT: https://www.youtube.com/watch?v=4lT2GpwzaMU&feature=youtu.be
The Day (Grace magazine): http://www.theday.com/article/20131218/GRACE01/131219832/-1/grace
Mystic River Press: http://www.mysticriverpress.com/news/latestnews/4102672-129/saunders-seeks-help-with-cmv-silent-virus-prevention-bill.html
Hartford Courant: http://www.courant.com/features/parenting/hc-mommy-minute-0428-20140428-story.html

Thank you.

Lisa Saunders
Box 389
Mystic, CT 06355
LisaSaunders42@gmail.com
http://congenitalcmv.blogspot.com/
www.authorlisasaunders.com

IF ONLY 500 CHARACTERS FOR SUBMISSION:
Please stop #1 birth defects virus. My local  media has covered my attempts to educate the public about preventing congenital cytomegalovirus (CMV), which causes more disabilities than Down syndrome. Learn more from the CDC: http://www.cdc.gov/cmv/index.html.
I am the parent rep. of the Congenital Cytomegalovirus Foundation (http://www.congenitalcmv.org/) and author of the memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV."
My work: http://congenitalcmv.blogspot.com/

The Empty Christmas Chair: Holidays without our daughter

I update my blog every year with this message and photo of the empty chair we place beside our fireplace.

The Empty Christmas Chair

Holidays without our daughter

 

Like many who have lost a loved one,  I tear up this time of year when I hear Bing Crosby sing “I'll Be Home for Christmas" on the car radio. I cry for my daughter Elizabeth would have turned 25 on December 18, 2014.

 

Expecting Elizabeth, due to be born on Christmas Eve of 1989, had been an exciting experience. But the moment she arrived on the 18th, I felt a stab of fear. My immediate thought was, “Her head looks so small—so deformed.”

The neonatologist said, "Your daughter's 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). Women who care for young children are at a higher risk for catching it because preschoolers are the majority of carriers. Pregnant women need to be careful not to kiss young children on or around the mouth or share food or towels with them.

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.

When my husband Jim heard Elizabeth's grim prognosis, he stared at her and said, “She needs me”—just like Charlie Brown with that pathetic Christmas tree.

It took me about a year, but I eventually stopped praying that a nuclear bomb would drop on my house 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, some Valium, and the Book of Psalms. We were eventually able to move forward as a happy, "normal" family.

Sixteen years later, I awoke feeling so proud of Elizabeth. It was her 16th birthday and just one week before her 17th Christmas. When the song “I’ll be home for Christmas” played on the radio, I cried thinking how hard Elizabeth fought to be home with us, overcoming several battles with pneumonia, major surgeries, and most recently, seizures. Weighing only 50 pounds, she looked funny to strangers as a result of her small head and adult teeth, but she was lovely to us with her long, brown hair, large blue eyes and soul-capturing smile. Although still in diapers and unable to speak or hold up her head, Elizabeth was very happy and loved going for long car rides. She especially enjoyed going to school and being surrounded by people, paying no mind to the stares of “normal” children who thought she belonged on the "Island of Misfit Toys."

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." The medical team did all they could, but she was gone.

While holding Elizabeth’s body on his lap, my husband looked down into her partially open, lifeless eyes and cried, “No one is ever going to look at me again the way she did.”

As I prepare to celebrate my ninth Christmas without her, it was with some heartache that I brought down the holiday decorations from the attic. Elizabeth used to love to sit on the couch with her big, once homeless old dog Riley, and watch us decorate. (Their story is told in my memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV.)

Now, I perform a new Christmas tradition. I carefully unfold the black and red checked shirt Elizabeth wore on her last day and hang it over an empty chair beside our fireplace. Although she can't be home for Christmas, I feel that she is my “Tiny Tim” who would say if she could, “God bless us, everyone!”

Although I miss Elizabeth, I’m glad she is free from suffering, glad she is safe in her new, Heavenly home. When my time comes, I will see  her again. My father wrote a fairytale that I found very helpful after Elizabeth died.  I have made it available as a free e-book, Surviving Loss: The Woodcutter's Tale. It includes comments on grieving from Julie Russell, a licensed clinical social worker, plus heart-felt illustrations by Elizabeth's aunt, Marianne Greiner. Download your free e-book in several different formats at: https://www.smashwords.com/books/view/283862

 

The Only Thing I Can Do for Elizabeth Now

Since Elizabeth no longer needs my care, the only thing I can do for her now is to care for those not yet born—to prevent them from suffering as Elizabeth did. I do that by speaking and writing about congenital CMV prevention and am trying to get Connecticut politicians to pass a bill requiring congenital CMV education--especially in daycare settings. The Public Health Committee and House of Representatives pass this bill during the 2014 legislative session, but the Senate failed to vote on it. I'm currently meeting with politicians to try again for 2015. Learn more: Mom Asks CT AGAIN to Stop #1 Birth Defects Virus

After presenting the story of Elizabeth's life at the international Congenital CMV conference held at the Centers for Disease Control (CDC) in Atlanta, GA, in 2008, scientists from all over the world approached to thank me for inspiring them to continue their work. Mothers, on the other hand, pushed their children towards 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 do all you could to shout it from the rooftops?"

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

 

How to Get Congenital CMV Bill Started in Your State

Get Utah's Congenital Cytomegalovirus (cCMV) bill passed in your state/territory.

Now is the time to start. This blog post includes what to say and what papers to give/email your representatives.

 

Contact your House and Senate representatives and ask them to present a bill similar to Utah's to their Public Health Committee.  Click here to find your state/territory website: Congenital CMV and Your State/Territory Representatives. Your state's website will also have a link showing you how a bill becomes a law. (After you contact your own House and Senate representative, you will want to start the work of gathering the email address of every representative in your state.)

I got a lot of initial advice on who to reach and how from my Town Clerk (the person who issues marriage and dog licenses). Gather a team of people in your state and cCMV experts willing to be contacted. Get ideas of who to collaborate with from here: Congenital Cytomegalovirus (CMV) Contacts for Connecticut, Utah and U.S.

 

When possible, it's always best to see your representatives in person, but for those caring for a critically ill child, that's almost impossible so e-mails and calls will do (calls are great if you can do it because they/their staff will be forced deal with you and will start talking about cCMV to each other if they get a lot of calls from your friends and family).

 

I just met with my newly elected representative (who takes office in Jan. 2015) and handed him a little paper folder (with pockets for his convenience) with the most important information, including what it costs our state to take care of children disabled by congenital CMV. Representatives need to know this so they can explain why it's worth spending some money to see this bill pass. He will now write up the bill and present it Connecticut's Public Health Committee. If the Public Health Committee passes it after hearing/reading testimonies, then the House of Representatives will vote on it, and if they pass it, then the Senate will vote on it. If the Senate passes it before the end of the session (my Senate didn't vote it so I have to start this ALL OVER AGAIN with the Public Health Committee in 2015), then the Governor has to sign it into law for it to become a law.

This is what your state really wants to know (but may be afraid to ask you):

What is the annual cost of caring for children disabled by congenital cytomegalovirus (cCMV) in the U.S. and by state? According to researchers and the Institute of Medicine, the annual cost of cCMV is $1-4 billion. Using a conservative $1 billion per year, the following calculates cost per child (which varies with severity of disability). In 2012, 3,952,841 were born in U.S. with 1/750, or .0013, disabled by cCMV = 5,139.  Annual cost per disabled child = $1,000,000,000/5139 or $194,590/year/child.

CALCULATE COST PER STATE( or territory):

Annual cost of cCMV by state: x births (X) .0013 cCMV disabled = x children born disabled by cCMV (X) $194,590/year/child= $x annually to care for  children disabled by congenital cytomegalovirus. 

(Example--ANNUAL COST FOR CONNECTICUT: Annual cost of caring for children disabled by congenital CMV in CT: 36,359 births X .0013 cCMV disabled = 47 children X $194,590/year/child= $9,145,730, or over $9 million annually to care for cCMV children.)  The other thing your representative wants to know is will you gather your friends and family to testify (through writing or by appearing at your state capitol) at the Public Health Committee hearing meeting?

Your representatives want as little paper as possible, so I boiled it down to the questions I was asked most last year when I tried to get this bill passed in Connecticut. Here is a pdf  of my PowerPoint on what I did and how you can do it--includes advice on how you can get started, sample letters to politicians, what worked and what didn't work plus how I got the media to help me move the state forward. Just so you understand where I'm coming from, I'm the mother of Elizabeth who struggled with the effects of congenital cytomegalovirus (cCMV) until she died at age 16 in 2006 (Elizabeth's life with her big sister and a series of dysfunctional pets--until a homeless old dog came to her rescue-- is told in my memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV).

The following are the type of documents you want to give your politicians and/or media (revise some of them to fit you/your state):

News Release:Message to CT Politicians (can be tweaked to your circumstances/state to send out to the media in your area)

One Page cCMV Fact Sheet plus Bibliography by Lisa Saunders (this includes live links so you can find how many children are born in your state to plug into my formula--reviewed by doctors-- to come up with an approximate figure on how much cCMV disabled children are costing your area).

Chart of cCMV compared to other causes of disabilities

 

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

From Lisa to CT Politicians

 cCMV PRINTABLE BROCHURES for daycare providers, doctors and parents from Utah Health Department's Children's Hearing and Speech Services (your health department will appreciate seeing that another department has already composed the needed brochures--all they have to do is put their own state info in them).

Passed bill: Utah’s H.B. 81

For additional help, see this advice from Utah--the state that actually got a cCMV bill passed.

God bless us everyone in 2015!

Sincerely,

Lisa Saunders
PO Box 389
Mystic, CT 06355
LisaSaunders42@gmail.com
www.authorlisasaunders.com

Mom Asks CT AGAIN to Stop #1 Birth Defects Virus

 

RE: Congenital Cytomegalovirus Causes More Disabilities than Down Syndrome

Dear Connecticut Politicians,

I am the parent representative of Congenital Cytomegalovirus (CMV) Foundation and mother of Elizabeth born severely disabled by congenital CMV. Congenital cytomegalovirus (cCMV) causes more disabilities than Down syndrome.

I am hoping you will support a 2015 version of the 2014 bill  that was unanimously passed by both the Public Health Committee and House of Representatives in spring 2014: H.B. 5147: "AN ACT CONCERNING NEWBORN SCREENING FOR CYTOMEGALOVIRUS AND ESTABLISHING A PUBLIC EDUCATION PROGRAM FOR CYTOMEGALOVIRUS."

The Senate failed to vote on it before the end of the session despite “Letters of Testimony” from mothers whose babies were disabled by the preventable disease and Yale University’s Eugene D. Shapiro, M.D., Professor of Pediatrics, Epidemiology and Investigative Medicine. Connecticut’s failure to pass the bill was mentioned in the internationally published Associated Press article, “Silent virus a rare, dangerous risk for the unborn.”

If I understand correctly, the following co-sponsors of H.B. 5147 were reelected to serve in 2015: Kevin Ryan, 139th Dist.; Emmett D. Riley, 46th Dist.; Michelle L. Cook, 65th Dist.; Rosa C. Rebimbas, 70th Dist.; Noreen S. Kokoruda, 101st Dist.; Peter A. Tercyak, 26th Dist.; Mitch Bolinsky, 106th Dist.; Hilda E. Santiago, 84th Dist.; Gerald M. Fox, 146th Dist.; and Michael L. Molgano, 144th Dist.*

The representative responsible for passing and enacting the bill in Utah has offered to advise CT politicians about the legislation and needed funding (you can contact Rep.Ronda Rudd Menlove, PhD, Utah State University, at  Ronda.Menlove@usu.edu, or visit the Utah CMV Council).

The cost of CT's HB 5147 (2014) was $40,000 for the first year, and $26,000 for consecutive years. The cost of caring for ONE child disabled by cCMV is estimated at $194,590/year. The annual cost of caring for Connecticut’s children disabled by cCMV is over $9 million (47 children x $194,590).  Educating women on prevention is shown to reduce transmission of this disease by at least 50%.

Congenital cytomegalovirus (cCMV) causes more disabilities than Down syndrome and is the most common cause of nonhereditary sensorineural hearing loss in childhood. Between 50% and 80% of adults in the U.S. are infected with CMV by 40 years of age. According to the CDC, in the U.S.: 

• Every hour, congenital CMV causes one child to become disabled. 
• Approximately 1 in 150 children is born with congenital CMV infection (30,000 each year).
• Approximately 1 in 750 babies born are permanently disabled by cCMV. (Download CDC's flyer, What Women Should Know About Cytomegalovirus (CMV): http://congenitalcmv.org/CDCbrochure.pdf.)

 In 2014, Fox CT interviewed me in my home with Dr. Brenda Balch, Connecticut's Early Hearing Detection & Intervention Chapter Champion, about H.B. 5147 and disabilities caused by congenital CMV (cCMV).

Which women are most at risk for contracting CMV?

 “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., Professor Emeritus of Pediatrics and Professor of Microbiology and Immunology, Virginia Commonwealth University. 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 cytomegalovirus.  Day-care workers are at greater risk than people who don’t work in such a setting. Prevention measures include refraining from kissing toddlers on the mouth and frequent hand washing.

Why don’t doctors warn women of childbearing age about congenital CMV?

 

Doctors don’t realize how prevalent it is. Fewer than half (44%) of OB/GYNs surveyed reported counseling their patients about preventing CMV infection.

Utah is currently the only state working to prevent congenital CMV (cCVM). Utah’s H.B. 81, which went into effect July 1, 2013, requires the Health Department (click on Children's Hearing and Speech Services to download English/Spanish pamphlets for daycare providers, doctors and parents) to teach CMV prevention and test newborns for cCMV if they fail two hearing screen tests so their families can learn about the availability of early intervention services and treatment options. Utah has a health department Web page and pamphlets for doctors' offices about congenital cytomegalovirus. Less than a year after the law was enacted in Utah, "About 50 Utah newborns have had CMV tests so far; nine tested positive, said Stephanie McVicar, director of newborn hearing screening for Utah's health department."

Why is it important to know if a baby has congenital CMV?  
“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 Registry and Research Program

My daughter Elizabeth suffered for 16 years from severe disabilities caused by cCMV until her death during a seizure. Elizabeth was unable to walk and talk and suffered from frequent bouts of pneumonia and uncontrollable epilepsy. She required several surgeries as she aged, such as spinal fusion, and was gradually losing her hearing. I had run a licensed daycare center for young children when I was pregnant with Elizabeth. Nowhere in the licensing literature did it state the precautions to take when working with children under three years of age. As far as I can tell, Connecticut still does not promote CMV awareness and its licensed daycare centers.

I am the author of the memoir, Anything But A Dog!: The Perfect Pet For A Girl With Congenital Cmv (Cytomegalovirus), and lecture to international audiences about how they can help prevent the disease. I recently stood before my daughter's grave and promised her I would get Connecticut to pass this bill in 2015. Mothers like me need the support of our country to ensure Elizabeth and others like her didn't suffer in vain.

I provide a one-page Congenital Cytomegalovirus (cCMV) Fact Sheet with additional pages for sources of information, including contact information for the county’s cCMV experts, on my blog at:  http://congenitalcmv.blogspot.com. For more information about the Congenital Cytomegalovirus (CMV) Foundation, visit: www.congenitalcmv.org. You may contact me at LisaSaunders42@gmail.com

###

*Contact reelected Co-Sponsors of HB 5147 (2014) at: Kevin.Ryan@cga.ct.gov, Emmett.Riley@cga.ct.gov, Michelle.Cook@cga.ct.gov, Peter.Tercyak@cga.ct.gov, Noreen.Kokoruda@housegop.ct.gov, Hilda.Santiago@cga.ct.gov, Mitch.Bolinsky@housegop.ct.gov, Rosa.Rebimbas@housegop.ct.gov.

 

Additional comments from mothers:

 

Jenny Bailey of Texas said, "In 1990, I was seven-months pregnant with my daughter, Caroline, when her CMV was diagnosed in utero and I was told she would probably die or have multiple severe disabilities.  I am thankful she was the first baby in Houston treated with ganciclovir at birth and doesn't have disabilities other than deafness! She is living a full and independent life at age 24, but other babies are not being diagnosed and miss this chance of saving their hearing and promoting normal brain growth with a drug we got a quarter-century ago."

 

Farah Armstrong of Texas, whose infant daughter Maddie died from cCMV complications in February 2014, wrote to Connecticut legislators shortly thereafter: "You may not currently have a pregnant daughter, daughter-in-law, niece, granddaughter, neighbor, or friend, but chances are you will at some point in your lifetime. No mother should have to find out after giving birth that they had passed a preventable virus to their baby before birth."

*Congenital Cytomegalovirus (cCMV) Fact Sheet*

 

What is congenital Cytomegalovirus (cCMV)?

The #1 viral cause of birth defects. It causes more disabilities than Down syndrome and is the most common cause of nonhereditary sensorineural hearing loss in childhood. Between 50% and 80% of adults in the U.S. are infected with CMV by 40 years of age. According to the CDC, in the U.S.:

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

 

·           Approximately 1 in 150 children is born with congenital CMV infection (30,000 each year).

 

·           Approximately 1 in 750 babies born are permanently disabled by cCMV

 

Why don’t doctors warn women of childbearing age about congenital CMV?

 

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 National Center for Biotechnology Information article, “Washing our hands of the congenital cytomegalovirus disease epidemic,”.

 

What percent of women of child-bearing age know about congenital CMV?

 

Only 22% of women surveyed had heard about congenital CMV , but most in that group didn’t know how to prevent it.

What can our state do to protect our children from congenital CMV?

Educate public. Pass a bill similar to Utah’s H.B 81 (2013) requiring the Health Department (Children's Hearing and Speech Services) to teach CMV prevention and test newborns for cCMV if they fail two hearing screen tests so their families can be educated about the possible impacts of cCMV, the availability of early intervention services, medical intervention, and treatment options.

What is the annual cost of implementing this congenital CMV education and hearing test bill?

 

Utah’s cost: $30,800 per year. In 2014, the cost in Connecticut was estimated at $40,000 first year, $26,000 subsequent years.
 

What is the annual cost of caring for children disabled by congenital cytomegalovirus (cCMV) in the U.S. and by state? According to researchers and the Institute of Medicine, the annual cost of cCMV is $1 - 4 billion. Using a conservative $1 billion per year, the following calculates cost per child (which varies with severity of disability). In 2012, 3,952,841 were born in U.S. with 1/750, or .0013, disabled by cCMV = 5,139.  Annual cost per disabled child = $1,000,000,000/5139 or $194,590/year/child.

 

ANNUAL COST FOR CONNECTICUT: Annual cost of caring for children disabled by congenital CMV in CT: 36,359 births X .0013 cCMV disabled = 47 children X $194,590/year/child= $9,145,730, or over $9 million annually to care for cCMV children. “This figure is almost certainly an underestimate, especially now with enhanced mobility aids, surgical interventions, cochlear implants, antiviral therapies, occupational and physical therapies, etc., which were not likely included in the older cost estimates,” says Dr. Demmler-Harrison, Director, Congenital CMV Disease Registry and Research Program.

Which women are most at risk for contracting CMV?

 “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., Professor Emeritus of Pediatrics and Professor of Microbiology and Immunology, Virginia Commonwealth University. 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 cytomegalovirus.  Day-care workers are at greater risk than people who don’t work in such a setting.

Will it really make a difference if women are educated on how to prevent contracting CMV?

Yes. Studies in France and the U.S. proved women educated about prevention reduced transmission to their unborn by at least 50%.

 

How can CMV be avoided? See CDC: CMV Prevention tips

·           Wash hands often with soap and water for 15-20 seconds, especially after wiping runny noses, changing diapers, picking up toys, etc. If soap and water are not available, use alcohol-based hand gel.

·           Use soap and water or a disinfectant to clean hard surfaces that have been contaminated by secretions.

·           Don’t share food, drinks, or eating utensils with young children.

·           Don’t kiss young children on the lips—give them a big hug and a kiss on top of the head.

 

·           If you work in a day care center, limit close contact with children younger than 2½ years of age, especially if you've never been infected with CMV or don't know if you've been infected.

 

Can you treat cCMV? “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.  It is now recommended for newborns with symptomatic CMV disease at birth and even those that appear healthy yet fail their newborn hearing screens because of deafness,” says Dr. Demmler-Harrison, Director, Congenital CMV Disease Registry and Research Program.

 

 

 

Bibliography

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/

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, 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

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

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, Michael J.; Davis, Katherine Finn. (2005, June 20). Washing our hands of the congenital cytomegalovirus disease epidemic. Retrieved from National Center for Biotechnology Information : http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1182379/

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

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. (2014, Feb. 28). Public Hearing Testimony, Raised H.B. No. 5147. Retrieved from Connectictut General Assembly: http://www.cga.ct.gov/2014/PHdata/Tmy/2014HB-05147-R000228-Gail%20Demmler,%20MD-TMY.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

H.B. No. 5147. (2014). Retrieved from Connecictut General Assembly : http://www.cga.ct.gov/asp/cgabillstatus/cgabillstatus.asp?selBillType=Bill&bill_num=5147&which_year=2014

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

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/

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

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.

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

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

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 Women Should Know About Cytomegalovirus (CMV). (n.d.). Retrieved from Congenital Cytomegalovirus Foundation: http://congenitalcmv.org/CDCbrochure.pdf

 

 

 

*This fact sheet was compiled by Lisa Saunders, the parent representative of Congenital Cytomegalovirus (CMV) Foundation. Contact: LisaSaunders42@gmail.com. Visit her website at www.authorlisasaunders.com or Congenital CMV blog at:  http://www.congenitalcmv.org/ 

Lisa Saunders lives in the 41st House District (Groton and New London, CT). Her newly elected House representative is:

Aundré Bumgardner,

aundrebumgardner@gmail.com
  

 

Lisa's State Senator: Senator Andrew Maynard
   
Here are reelected Co-Sponsors of HB 5147 (2014): Kevin.Ryan@cga.ct.gov, Emmett.Riley@cga.ct.gov, Michelle.Cook@cga.ct.gov, Peter.Tercyak@cga.ct.gov, Noreen.Kokoruda@housegop.ct.gov, Hilda.Santiago@cga.ct.gov, Mitch.Bolinsky@housegop.ct.gov, Rosa.Rebimbas@housegop.ct.gov.  

 

Newly elected  senator who may be supportive:   Paul  Formica, pmform2010@aol.com

 

 

 

 

Sara Doutre, co-founder of the Utah CMV Council, stands beside a Utah bus advertisement for congenital cytomegalovirus prevention. Doutre is mom to Daisy, born with congenital CMV, and daughter of Ronda Menlove, the representative responsible for leading Utah to pass and enact the first U.S. CMV awareness and testing legislation (2013). For advice, contact Representative Ronda Rudd Menlove, PhD, Utah State University, Ronda.Menlove@usu.edu,  or Sara Doutre at sara@doutreconsulting.com
 

 

CONNECTICUT

Lisa Saunders, Congenital CMV Foundation parent representative (mother of Elizabeth severely disabled by congenital CMV, 1989-2006), PO Box 389, Mystic, CT 06355, LisaSaunders42@gmail.com (sent Letter of Testimony to CT’s HB 5147).

Amy Mirizzi, MPH, CPH, Early Hearing Detection & Intervention (EHDI) Program, Family Health Section, Connecticut Department of Public Health, 410 Capitol Avenue, MS # 11MAT, Hartford, CT 06134-0308. Phone: (860) 509-8175, amy.mirizzi@ct.gov, http://www.ct.gov/dph/ehdi

Eugene D. Shapiro, M.D., Professor of Pediatrics, Epidemiology and Investigative Medicine, Yale University, eugene.shapiro@yale.edu (sent Letter of Testimony to CT’s HB 5147).

Casey Famigletti of New Canaan, Connecticut, mother of child born disabled by congenital CMV (sent Letter of Testimony to CT’s HB 5147).

UTAH

Rep.Ronda Rudd Menlove, PhD, Utah House of Representatives and Senior Vice Provost, Utah State University.  She was the representative responsible for passing and enacting the bill in Utah (2013) and has offered to advise CT politicians about the legislation and needed funding. Contact 435-760-2618, Ronda.Menlove@usu.edu or visit the Utah CMV Council.

Stephanie Browning McVicar, Au.D., CCC-A, DOCTOR OF AUDIOLOGY (she worked tirelessly to pass the Utah bill), Specialty Services Program Manager, State EHDI Director, State of Utah Department of Health, Children with Special Healthcare Needs, Children's Hearing and Speech Services, (801) 584-8218, smcvicar@utah.gov (click on Utah's Children's Hearing and Speech Services to download English/Spanish pamphlets for daycare providers, doctors and parents).

Sara Menlove Doutre, President and Education Policy Consultant at Doutre Consulting (her daughter was affected by congenital cytomegalovirus) and co-founder of Utah CMV Council. sara@doutreconsulting.com  (sent Letter of Testimony to CT’s HB 5147).

NATIONAL

CDC: Michael Cannon, Ph.D. mrc7@cdc.gov, a research epidemiologist at the Centers for Disease Control, Atlanta, Georgia. Dr. Cannon is develops strategies to prevent congenital CMV infection through public awareness and education.

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 a parent support group (sent Letter of Testimony to CT’s HB 5147).

Lenore Pereira, Ph.D., Congenital CMV Foundation founder and Professor, Cell and Tissue Biology Department, University of California San Francisco, at 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.

Stuart Adler, M.D., Professor Emeritus of Pediatrics and Professor of Microbiology and Immunology, Virginia Commonwealth University. sadler@vcu.edu (sent Letter of Testimony to CT’s HB 5147).

Alyson Ward, National Center for Hearing Assessment and Management (NCHAM), Alyson.Ward@usu.edu

Staley, Plotkin, MD, Professor Emeritus of Pediatrics, University of Pennsylvania, Vaccinology Consultant (sent Letter of Testimony to CT’s HB 5147). Contact: stanley.plotkin@vaxconsult.com