Congenital CMV (cytomegalovirus)

Please Stop CMV--#1 Birth Defects Virus

2010-02-23T02:49:00.000-08:00

Stop CMV--#1 Birth Defects Virus

The moment I gave birth to my daughter Elizabeth in December of 1989, I felt a stab of fear—her head was so small, so deformed. Within 12 hours, I was told she had been profoundly disabled by congenital CMV (cytomegalovirus). The neonatologist said, “If she lives, she will never roll over, sit up, or feed herself.” He was right.

How and why did I catch this virus that I had barely heard of? According the Centers for Disease Control and Prevention (CDC), congenital CMV is the #1 viral cause of birth defects--causing more disabilities than Down syndrome. CMV is spread through bodily fluids such as saliva and urine. Women who care for young children are at a higher risk for catching it because preschoolers are the majority of carriers. (Nurses do not seem to be in the risk category because they practice diligent hand-washing and aren’t kissing their patients around the mouth or sharing utensils with them.) While I was pregnant with Elizabeth, I not only had a toddler of my own, but also ran a licensed daycare center in my home. I felt sick at what my ignorance 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.

I took about a year, but with the help of friends and family, prescription sedatives, and the Book of Psalms, I was able to accept Elizabeth’s disabilities and love her the way she was. Our family moved forward as a happy one.

Sixteen years after Elizabeth’s birth, I awoke on her birthday feeling so proud of her. She had fought hard to stay with us, surviving several bouts of pneumonia, seizures and surgeries. Weighing only 50 pounds, she looked odd to strangers as a result of her small head and big adult teeth, but she was lovely to us with her long, thick brown hair, large blue eyes and soul-capturing smile. Although Elizabeth was still in diapers, and could not speak or hold up her head, she was a very happy little girl, with a love of adventure— long car rides being one of her favorite activities. She especially loved going to school and being surrounded by people, paying no mind to the stares of other children who approached her in public. She smiled at anyone who would stroke her hair or cheek. When she wasn't busy, she sat propped on our couch watching cartoons with a big, lazy dog we got from an animal shelter.

Two months after her 16th birthday, Elizabeth died suddenly during a seizure. Holding her body in his arms and looking into her lifeless eyes, my husband, Jim, cried, "No one is ever going to look at me again the way Elizabeth did." Now our girl would be forever "sweet sixteen."

Back in 1989, when I was pregnant with Elizabeth, my OB/GYN hadn't warned me about CMV or how to prevent it--and much to my anguish, in 2010, they still don't.

When I spoke at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community of scientists and families about Elizabeth’s life with CMV, mothers approached me after my speech, holding their young children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"

One OB/GYN was quoted in FitPregnancy magazine (June/July '08) as saying, "The list of things we're supposed to talk about during women's first visit could easily take two hours and scare them to death.” Others simply don’t realize the prevalence of congenital CMV.

In their article, “Washing our hands of the congenital cytomegalovirus disease epidemic,” Drs. Cannon and Davis state: “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.

”More than half of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists (ACOG) in 2007 admitted they don't routinely caution their patients about CMV despite these figures from the CDC:
• Every hour, congenital CMV causes one child to become disabled
• Each year, about 30,000 children are born with congenital CMV infection
• About 1 in 750 children is born with or develops permanent disabilities due to CMV
• About 8,000 children each year suffer permanent disabilities caused by CMV (See: www.cdc.gov/cmv).

Examples of symptoms or disabilities caused by congenital CMV:

Temporary Symptoms
Liver problems
Spleen problems
Jaundice (yellow skin and eyes)
Purple skin splotches
Lung problems
Small size at birth
Seizures

Permanent Symptoms or Disabilities
Hearing loss
Vision loss
Mental disability
Small head
Lack of coordination
Seizures
Death

According a 2006 survey reported in the article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," of the 643 women surveyed about their CMV awareness, only 22% had heard of it and most of those could not correctly identify modes of CMV transmission or prevention.

The direct costs of caring for CMV-disabled children are estimated at $1-$2 billion annually.

Reduce Chances of Contracting CMV:
· Refrain from kissing children around the mouth--give them a big hug and a kiss on the top of the head instead.
· Refrain from sharing food and utensils with others, especially children.
· Wash your hands diligently with soap and water after wiping runny noses, changing diapers, picking up toys, etc. If soap and water are not available, use alcohol-based hand gel.

“It is important to remember that CMV is most commonly spread in the family setting. Reason being is that in the home environment, families are more casual about hygiene and for instance may share eating and drinking utensils, food and beverages, or be hurried during diaper change and forget to immediately wash hands afterwards,” states Carol M. Griesser, R. N., Research Nurse and Clinical Coordinator, Congenital CMV Longitudinal Studies, National Congenital CMV Disease Registry, Baylor College of Medicine, Texas Children's Hospital. Griesser suggests ways to keep the home and daycare environment safer: “Unlike some other viruses, cytomegalovirus is a very fragile virus that usually does not live on a surface beyond about 30 minutes time. Active CMV can be destroyed or rendered inactive by washing any contaminated objects with a 10% bleach solution (followed by rinsing the object). Objects that can't withstand the bleach solution disinfectant method, such as stuffed animals and pillows, should be put outside in direct sunlight for about a couple of hours.”

What I do to Stop CMV:

•Elizabeth’s big sister, Jackie Saunders, summarized my work to Stop CMV on my congenital CMV blog: http://congenitalcmv.blogspot.com/ I also:
•Write to magazine/newspaper editors asking if they’d like to feature CMV
•Write to producers about my/others willingness to speak on T.V. about CMV
•Write letters to elected officials asking for a CMV education campaign
•Published free e-book, How to Get Published, to make available an excerpt of Anything But a Dog! The perfect pet for a girl with congenital CMV
•Run “Open Mike Nights” to read aloud my CMV prevention articles
•Use Youtube. Twitter, Facebook, and LinkedIn to raise awareness.
•Submit articles about CMV to newspapers/online publications
•Post CMV info on social networking sites like momslikeme.com
•Offer myself and others as public speakers on CMV. My PowerPoint includes photos of Elizabeth: http://docs.google.com/present/edit?id=0AdKlfxar2CmjZGdjcjZienZfOTBkZjNmejZmeA&hl=en
•Add my voice to CMV parents and the general public at: www.stopcmv.org
•My book, Anything But a Dog! raises CMV awareness and funds for the National Congenital CMV Disease Registry if purchased through their site.

How you can help stop CMV:
1. Print out the brochures and flyers found on CDC Web pages and at http://www.stopcmv.org/ and ask your doctors to post them on their walls and/or hand out. http://stopcmv.org/images/stopcmvnewflyer.pdf

2. Write letters to the editors of magazines, your local newspapers and broadcast media (my CMV blog includes samples at: http://congenitalcmv.blogspot.com/2009/09/cmv-parents-send-letter-to-media.html and http://congenitalcmv.blogspot.com/2009/04/letter-to-tv-producers-about-cmv.html)

3. Write letters to your elected officials asking them to promote an educational campaign (my CMV blog includes a sample: http://congenitalcmv.blogspot.com/2009/04/prevent-1-birth-defects-virus.html).

4. Donate to an organization that supports CMV research, disseminates information and provides a parent support group, by contacting the National Congenital CMV Disease Registry at (832) 824-4387 or visit www.bcm.edu/pedi/infect/cmv

5. In an effort to warn those who have never heard of congenital CMV, I wrote a light-hearted memoir about my daughter’s life with her lazy, old devoted canine, called, “Anything But a Dog ! The perfect pet for a girl with congenital CMV.” It includes interviews with the country's leading CMV experts and raises funds for CMV research if purchased through the National CMV Disease Registry at www.unlimitedpublishing.com/cmv Some have purchased copies to donate to their local libraries in order to raise CMV awareness in their area.

CMV Sources of Information:

CMV CDC site: http://www.cdc.gov/cmv/
Charts showing prevalence of congenital CMV and women’s knowledge of it: http://www.cdc.gov/Features/dsCytomegalovirus/
This CDC link includes congenital CMV podcasts http://www.cdc.gov/Features/Cytomegalovirus/

The STOP CMV parent action network: http://www.stopcmv.org/
(has a good, one-page flyer for posting in offices at: http://stopcmv.org/images/stopcmvnewflyer.pdf)

Good basic booklet available on CMV (includes comments on prenatal blood tests)
http://www.bcm.edu/web/pediatrics/documents/CMV_Brochure_eng.pdf

Articles and Studies:
To read about my CMV awareness work along with advice from internationally known CMV experts, visit the Times Herald Record article: www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313

“Washing our hands of the congenital cytomegalovirus disease epidemic”: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379

"Knowledge and Practices of Obstetricians and Gynecologists Regarding Cytomegalovirus Infection During Pregnancy --- United States, 2007": www.cdc.gov/mmwr/preview/mmwrhtml/mm5703a2.htm

2006 PubMed Central article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1779612

Fit Pregnancy Magazine article quoting an OB/GYN on why CMV prevention isn't discussed(June/July 2008 issue): Protect Your Baby From A Tot-Borne Virus or visit: www.fitpregnancy.com/yourbaby/babycare/40723077.html?subsection=baby_health_development

For more information about congenital CMV and how you can protect your pregnancy, contact Gail J Demmler MD, Professor of Pediatrics at Baylor College of Medicine, Director of Congenital CMV Disease Registry, Clinic and Research Program at gjdemmle@texaschildrenshospital.org
or visit: www.bcm.edu/pedi/infect/cmv. The Registry supports CMV research, disseminates information and provides a parent support group. Registry: (832) 824-4387.

The 2008 Congenital CMV Conference was co-sponsored by the CDC and the Congenital CMV Foundation. The CDC co-organizer, Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, can be reached at mcannon@cdc.gov

The other 2008 Congenital CMV Conference co-sponsor, CMV Foundation founder, Lenore Pereira, Ph.D., Professor, Microbiology and Virology, Cell and Tissue Biology Department, University of California San Francisco, can be reached at lenore.pereira@ucsf.edu, or visit www.congenitalcmv.org/ which includes Members of the Scientific Advisory Committee with their contact information. Dr. Pereira has studied immune responses to CMV infection and molecular biology of viral glycoproteins for over 25 years. To learn more about the work of the country’s leading CMV experts, visit: http://www.congenitalcmv.org/foundation.htm

Pregnant and have an active CMV infection?
Contact an expert at the Texas Children’s Hospital Fetal Center for advice. For contact information, visit http://www.texaschildrens.org/CareCenters/fetalsurgery/default.aspx
Also contact the National Congenital CMV Disease Registry at cmv@bcm.edu or visit: www.bcm.edu/pedi/infect/cmv

Treatment:

There have been recent breakthroughs in helping unborn children if their mothers become infected with CMV. Treatment of CMV infected women with intravenous CMV hyperimmune globulin is showing promising results. More information can be found in the article, “Passive Immunization during Pregnancy for Congenital Cytomegalovirus Infection,” by Giovanni Nigro, M.D., Stuart P. Adler, M.D., Renato La Torre, M.D., Al M. Best, Ph.D., (originally published in The New England Journal of Medicine on September 29, 2005).

Some children born with congenital CMV are being treated with ganciclovir. The CDC states: "There is some evidence that ganciclovir, an antiviral drug, may prevent hearing loss in infants born with congenital CMV. However, this drug has serious side effects and was only tested in children with severe congenital CMV symptoms. If your child has symptoms of congenital CMV, you should consult with your doctor to decide whether to try treatment."

For scientific papers on CMV stats and emerging treatments, see: http://www.congenitalcmv.org/research.htm

Your Child Disable by CMV?

Contact other CMV parents for advice or simply “chat” at: http://listserv.syr.edu/scripts/wa.exe?A0=cmv

Join the STOP CMV Action Network and read each other’s stories at: http://www.stopcmv.org/

Compiled by:

Lisa Saunders
http://www.authorlisasaunders.com/
http://congenitalcmv.blogspot.com/
saundersbooks@aol.com

Soap and Water Prevent Birth Defects

2009-11-25T03:48:00.000-08:00

Soon a magazine will be publishing the following story with sidebar. I was asked to get it down to 825 words, which I've done in the following:

Soap and Water Prevent Birth Defects
by
Lisa Saunders

Few women of child-bearing age realize that plain old soap and water can prevent the #1 viral cause of birth defects, congenital cytomegalovirus (CMV).

Although congenital CMV causes more birth defects than Down syndrome, more than half of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists admitted they don't routinely caution their patients how to avoid the virus.

I'm a mother who didn't know about CMV prevention until it was too late for my daughter, Elizabeth, who was born severely disabled by congenital CMV in 1989. The moment I saw her, I felt a stab of fear--her head was so small, so deformed. The neonatologist said, "If she lives, she will never roll over, sit up, or feed herself." He was right.

How and why did I catch this virus that I had barely heard of? The CMV literature stated that the virus is spread through bodily fluids such as saliva and urine. Women who care for young children are at a higher risk for catching it because preschoolers are the majority of carriers. (Nurses, however, do not seem to be in the risk category because they practice consistent hand-washing and aren’t kissing their patients around the mouth or sharing utensils with them).
While I was pregnant with Elizabeth, I not only had a toddler of my own, but also ran a licensed daycare center in my home. I felt sick at what my ignorance 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.

It took 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, the Book of Psalms, and a couple of prescription sedatives!

Sixteen years after Elizabeth’s birth, I awoke on her birthday feeling so proud of her. She had fought hard to stay with us, surviving several bouts of pneumonia, seizures and surgeries. Weighing only 50 pounds, she looked odd to strangers as a result of her small head and big adult teeth, but she was lovely to us with her long, thick brown hair, large blue eyes and soul-capturing smile. Although Elizabeth was still in diapers, and could not speak or hold up her head, she was a very happy little girl, with a love of adventure— long car rides being one of her favorite activities. She especially loved going to school and being surrounded by people, paying no mind to the stares of other children who approached her in public. She smiled at anyone who would stroke her hair or cheek. When she wasn't busy, she sat propped on our couch watching cartoons with a big, lazy dog we got from an animal shelter.

Two months after her 16th birthday, Elizabeth died suddenly during a seizure. Holding her body in his arms and looking into her lifeless eyes, my husband, Jim, cried, "No one is ever going to look at me again the way Elizabeth did." Now my girl would be forever "sweet sixteen."

In an effort to educate those who have never heard of congenital CMV, I wrote a light-hearted memoir about Elizabeth’s life with her lazy, old devoted canine, called, "Anything But a Dog! The perfect pet for a girl with congenital CMV." It includes interviews with the country's leading CMV experts and raises funds for CMV research and parent support if purchased through the National Congenital CMV Disease Registry.

To see photos of Elizabeth growing up or to meet other families affected by congenital CMV, please visit my Web site at http://www.authorlisasaunders.com/

###

Lisa Saunders is a full-time writer for the State University of New York at Rockland Community College and is a member of its Speakers Bureau. She is a STOP CMV and Congenital CVM Foundation representative and author of "Anything But a Dog! The perfect pet for a girl with congenital CMV"; "Ride a Horse, Not an Elevator" and "Ever True: A Union Private and His Wife." Lisa and her husband, Jim, reside in Suffern, New York, with their beagle/basset hound. Visit Lisa at http://www.authorlisasaunders.com/

SIDEBAR:
According to the Centers for Disease Control and Prevention (CDC):
· Every hour, congenital CMV causes one child to become disabled
· Each year, about 30,000 children are born with congenital CMV infection
· About 1 in 750 children is born with or develops permanent disabilities due to CMV
· About 8,000 children each year suffer permanent disabilities caused by CMV
Reduce Chances of Contracting CMV:
· Refrain from kissing children around the mouth
· Refrain from sharing food and utensils with others, especially children.
· Wash your hands diligently with soap and water after wiping runny noses, changing diapers, etc. If soap and water are not available, use alcohol-based hand gel.

Women Aren't Warned About #1 Birth Defects Virus

2009-10-07T03:17:00.001-07:00

Few women of child-bearing age realize that plain old soap and water can prevent the #1 viral cause of birth defects, congenital cytomegalovirus (CMV). And, many are never warned that kissing their toddlers around the mouth can lead to permanent disabilities for their developing fetus. (My daughter Elizabeth, pictured here, was born disabled by CMV.)

Although congenital CMV causes more birth defects than Down syndrome, more than half of OB/GYNs surveyed admitted they don't routinely caution their patients how to avoid the virus. Women who care for young children are at a greater risk for catching CMV because preschool children are the majority of the carriers. Although it is usually harmless to healthy individuals, it can be devastating to a developing fetus.

According to the Centers for Disease Control and Prevention (CDC):

Every hour, congenital CMV causes one child to become disabled

Each year, about 30,000 children are born with congenital CMV infection

About 1 in 750 children is born with or develops permanent disabilities due to CMV

In order to reduce the spread of CMV infection, women of childbearing age should refrain from kissing their children around the mouth, sharing food and utensils with them, and they must wash hands their hands diligently with soap and water after wiping runny noses, changing diapers, etc. The CDC states: “If soap and running water are not available, you may use alcohol-based hand gel.” For alcohol-based hand sanitizers to be effective, the Food and Drug Administration (FDA) recommends a concentration of 60% to 95% ethanol or isopropanol.

I’m a mother who didn’t know about CMV prevention until it was too late for my daughter, Elizabeth, who was born with congenital CMV in 1989. The moment Elizabeth was born, I felt a stab of fear—her head was so small, so deformed. The neonatologist said, “If she lives, she will never roll over, sit up, or feed herself.” He was right.

By her 16th birthday, Elizabeth had survived several bouts of pneumonia, seizures and major surgeries. Weighing only 50 pounds, she looked odd to strangers, but her cheerful, soul-capturing smile made her lovely to my husband, Jim, and me. Two months later, she died suddenly during a seizure. Jim cried, “No one is ever going to look at me again the way Elizabeth did.” No other parent should have to feel that way—especially when there are precautions one can take to avoid this kind of suffering.

After speaking at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, G.A., to a community scientists and families about Elizabeth’s life with CMV, mothers approached me holding their children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"

One OB/GYN was quoted in FitPregnancy magazine (June/July '08) as saying, "The list of things we're supposed to talk about during women's first visit could easily take two hours and scare them to death.” Others simply don’t realize the prevalence of congenital CMV.

In their article, “Washing our hands of the congenital cytomegalovirus disease epidemic,” Drs. Cannon and Davis state: “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.”

In an effort to warn those who have never heard of congenital CMV, I wrote a light-hearted memoir about my daughter’s life with her lazy, old devoted canine, called, “Anything But a Dog! The perfect pet for a girl with congenital CMV.” It raises funds for CMV research and parent support if purchased through the National Congenital CMV Disease Registry. About.com reviewed Anything But a Dog! saying, "Sheds light on a disorder that is preventable and not talked about enough…If you're an animal lover, you'll love the critter tales as much as the special-needs storyline…really lifted my spirits."

Please tell everyone about CMV and don’t forget to wash your hands!

Lisa Saunders, Parent Representative, Congenital CMV Foundation, and STOP CMV area rep.

CMV Parents: Send Letter to the Media

2009-09-22T04:08:00.000-07:00

Dear CMV Parents: If you like any of the following letter, just tweak it to focus on your child and your hometown and send it to any radio/TV stations/newspapers you are willing to be interviewed for (consider attaching a photo because that makes it more human and the print media need photos). Also, below my signature I included several links to CMV sources such as STOP CMV and the articles I quote.

Dear [name of producer/editor]

[Mention how you found out about them.]

Congenital CMV (cytomegalovirus) causes more birth defects than Down syndrome, yet very few women have actually heard how to prevent it. Would you be interested in interviewing congenital CMV experts and parents with CMV disabled children to educate the public how careful hand-washing and refraining from sharing utensils with toddlers can prevent this #1 viral cause of birth defects?

I live in Suffern, NY, am the parent representative of the Congenital CMV Foundation and a STOP CMV area representative. I didn’t know about CMV prevention until my daughter, Elizabeth, was born disabled by the virus in 1989. The moment I saw her, I felt a stab of fear—her head was so small, so deformed. The neonatologist said, “If she lives, she will never roll over, sit up, or feed herself.” He was right. By her 16th birthday, Elizabeth had survived several bouts of pneumonia, seizures and major surgeries. Weighing only 50 pounds, she looked odd to strangers, but her cheerful, soul-capturing smile made her lovely to my husband and me. Two months later, she died suddenly during a seizure.

I was invited to speak at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community of scientists and families about Elizabeth’s life with CMV. Mothers approached me after my speech, holding their young children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"

More than half of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists (ACOG) in 2007 admitted they don't routinely caution their patients about CMV despite these figures from the CDC:
• Every hour, congenital CMV causes one child to become disabled
• Each year, about 30,000 children are born with congenital CMV infection• About 1 in 750 children is born with or develops permanent disabilities due to CMV
• About 8,000 children each year suffer permanent disabilities caused by CMV (See: www.cdc.gov/cmv).

According a 2006 survey reported in the article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," of the 643 women surveyed about their CMV awareness , only 22% had heard of it and most of those could not correctly identify modes of CMV transmission or prevention.CMV infection is very common in day care settings, but CMV usually does not harm the children who become infected. However, pregnant women who become infected with CMV are at high risk of passing the infection to their fetuses, who it can harm. Pregnant women can help prevent CMV by hand-washing and by refraining from kissing young children around the mouth.

The direct costs of caring for CMV-disabled children are estimated at $1-$2 billion annually.

My short TV news interview: http://video.aol.com/video-detail/coping-with-cmv/3443071507

To read about my CMV awareness work along with advice from internationally known CMV experts, visit the Times Herald Record article: www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313

In an effort to warn those who have never heard of congenital CMV, I wrote a light-hearted memoir about my daughter’s life with her lazy, old devoted canine, called, “Anything But a Dog ! The perfect pet for a girl with congenital CMV.” It raises funds for CMV research if purchased through the National CMV Disease Registry at www.unlimitedpublishing.com/cmv

I am a full-time writer for the State University of New York at Rockland Community College and a member of its Speakers Bureau.

Please let me know if you would like the contact information for the country's leading CMV experts as well as the parents who have said they are willing to come on the show with their children (whose birth defects range from mild deafness to severe disabilities like my daughter).

Sincerely,
Lisa Saunders
[Include your full address and all phone numbers]
saundersbooks@aol.com
http://www.authorlisasaunders.com/

The contact information of other CMV Parents willing to come on the show with their children is also available through the STOP CMV Action Network at: http://www.stopcmv.com/ STOP CMV was founded by Janelle Greenlee of Sunnyvale, California, the mother of twins, Riley and Rachel, born with congenital CMV in 2003 .My CMV blog: http://congenitalcmv.blogspot.com/

To learn more about the work of the country’s leading CMV experts, visit: http://www.congenitalcmv.org/foundation.htm

CMV Information Sources:

CMV CDC site: http://www.cdc.gov/cmv/

“Washing our hands of the congenital cytomegalovirus disease epidemic”: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379

"Knowledge and Practices of Obstetricians and Gynecologists Regarding Cytomegalovirus Infection During Pregnancy --- United States, 2007": www.cdc.gov/mmwr/preview/mmwrhtml/mm5703a2.htm

2006 PubMed Central article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1779612

Article quoting OB/GYN why CMV p revention isn't discussed in Fit Pregnancy Magazine, June/July 2008 issue: Protect Your Baby From A Tot-Borne Virus or visit: www.fitpregnancy.com/yourbaby/babycare/40723077.html?subsection=baby_health_development

For more information about congenital CMV and how you can protect your pregnancy, contact Gail J Demmler MD, Professor of Pediatrics at Baylor College of Medicine, Director of Congenital CMV Disease Registry, Clinic and Research Program at gjdemmle@texaschildrenshospital.org or visit: www.bcm.edu/pedi/infect/cmv. The Registry supports CMV research, disseminates information and provides a parent support group. Registry: (832) 824-4387.

The 2008 Congenital CMV Conference was co-sponsored by the CDC and the Congenital CMV Foundation. The CDC co-organizer, Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, can be reached at mcannon@cdc.govThe other 2008 Congenital CMV Conference co-sponsor, CMV Foundation founder, Lenore Pereira, Ph.D., Professor, Microbiology and Virology, Cell and Tissue Biolog y Department, University of California San Francisco, can be reached at lenore.pereira@ucsf.edu, or visit www.congenitalcmv.org/ which includes Members of the Scientific Advisory Committee with their contact information. Dr. Pereira has studied immune responses to CMV infection and molecular biology of viral glycoproteins for over 25 years.

Toddler Saliva May Contain Birth Defects Virus

2009-05-12T03:23:00.000-07:00

Few women of child-bearing age realize that plain old soap and water can prevent the #1 viral cause of birth defects, congenital cytomegalovirus (CMV). And, women also need to know that they shouldn't kiss their toddlers around the mouth.

Although CMV causes more birth defects than Down syndrome, more than half of OB/GYNs surveyed admitted they don't routinely caution their patients how to avoid the virus. Women who care for young children are at a greater risk for catching CMV because preschool children are the majority of the carriers. Although it is usually harmless to healthy individuals, it can be devastating to a developing fetus.

According to the Centers for Disease Control and Prevention (CDC):
Every hour, congenital CMV causes one child to become disabled
Each year, about 30,000 children are born with congenital CMV infection
About 1 in 750 children is born with or develops permanent disabilities due to CMV (See http://www.cdc.gov/cmv/)

After speaking at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community scientists and families about Elizabeth’s life with CMV, mothers approached me holding their children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"

“It is important to remember that CMV is most commonly spread in the family setting. Reason being is that in the home environment, families are more casual about hygiene and for instance may share eating and drinking utensils, food and beverages, or be hurried during diaper change and forget to immediately wash hands afterwards,” states Carol M. Griesser, R. N., Research Nurse and Clinical Coordinator, Congenital CMV Longitudinal Studies, National Congenital CMV Disease Registry, Baylor College of Medicine, Texas Children's Hospital. Griesser suggests ways to keep the home and daycare environment safer: “Unlike some other viruses, cytomegalovirus is a very fragile virus that usually does not live on a surface beyond about 30 minutes time. Active CMV can be destroyed or rendered inactive by washing any contaminated objects with a 10% bleach solution (followed by rinsing the object). Objects that can't withstand the bleach solution disinfectant method, such as stuffed animals and pillows, should be put outside in direct sunlight for about a couple of hours.”

In an effort to warn those who have never heard of congenital CMV, I wrote a light-hearted memoir about my daughter’s life with her lazy, old devoted canine, called, “Anything But a Dog! The perfect pet for a girl with congenital CMV.” It raises funds for CMV research and parent support if purchased through the Registry at www.unlimitedpublishing.com/cmv About.com reviewed Anything But a Dog! saying, "Sheds light on a disorder that is preventable and not talked about enough…If you're an animal lover, you'll love the critter tales as much as the special-needs storyline…really lifted my spirits." To read an excerpt, visit: http://anythingbutadog.blogspot.com/

Please tell everyone about CMV and don’t forget to wash your hands! If you would like to meet moms whose children were born with CMV infection or pick up handouts about CMV prevention, there will be a CMV Awareness table set up at Adventureland Amusement Park on Long Island this Saturday, May 16. If you want to know more about that, visit Lynn Pickus's blog about it at: http://cmvadventureland.blogspot.com/
Sincerely,
Lisa Saunders

Prevent #1 birth defects virus--LETTER TO POLITICIANS

2009-04-25T06:51:00.000-07:00

Letter to Politicians:

I’m asking you to help, through some sort of resolution, proclamation, or legislation, to promote an educational campaign aimed at teaching women of childbearing age how to prevent the #1 viral cause of birth defects, congenital CMV (cytomegalovirus), which causes more disabilities than Down syndrome.

An educational campaign can mean something as simple as posting information about CMV prevention in the offices of OB/GYNs. You will find support for your efforts from the National Congenital CMV Disease Registry, the Congenital CMV Foundation and STOP CMV area parent reps who all work together to raise awareness and research funds.

I’m a mother who didn’t know about CMV prevention until my daughter, Elizabeth, was born disabled by the virus in 1989. The moment I saw her, I felt a stab of fear—her head was so small, so deformed. The neonatologist said, “If she lives, she will never roll over, sit up, or feed herself.” By her 16th birthday, Elizabeth had survived several bouts of pneumonia, seizures and major surgeries. Weighing only 50 pounds, she looked odd to strangers, but her cheerful, soul-capturing smile made her lovely to my husband, Jim, and me. Two months later, she died suddenly during a seizure. Holding Elizabeth’s body in his arms, Jim cried, “No one is ever going to look at me again the way Elizabeth did.” This kind of anguish must stop--especially since education might have avoided it.

I was invited to speak at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community scientists and families about Elizabeth’s life with CMV. Mothers approached me after my speech, holding their young children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"

More than half of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists (ACOG) in 2007 admitted they don't routinely caution their patients about CMV despite these CDC figures:
• Every hour, congenital CMV causes one child to become disabled
• Each year, about 30,000 children are born with congenital CMV infection
• About 1 in 750 children is born with or develops permanent disabilities due to CMV
• About 8,000 children each year suffer permanent disabilities caused by CMV (See: www.cdc.gov/cmv).

According a 2006 survey reported in the article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," of the 643 women surveyed about their CMV awareness, only 22% had heard of it and most of those could not correctly identify modes of CMV transmission or prevention.

CMV infection is very common in day care settings, but CMV usually does not harm the children who become infected. However, pregnant women who become infected with CMV are at high risk of passing the infection to their fetuses [who it can harm]. Pregnant mothers who have young children in day care or who work in day care centers may help prevent getting infected with CMV by practicing good hygiene and by avoiding direct contact with saliva through behaviors such as kissing young children on the lips. The CDC states: “If soap and running water are not available, you may use alcohol-based hand gel.”

The direct costs of caring for CMV-disabled children are estimated at $1-$2 billion annually. Surely it would save the government money overall if some time and resources were used to educate the public how to prevent contracting CMV. Other parents in the STOP CMV action network, and doctors who are the country’s leading CMV experts, advocate for legislation aimed at funds for the research and screening of congenital CMV in pregnant mothers and their newborn children.

In an effort to warn those who have never heard of congenital CMV, I wrote a light-hearted memoir about my daughter’s life with her lazy, old devoted canine, called, “Anything But a Dog! The perfect pet for a girl with congenital CMV.” Read an excerpt at http://anythingbutadog.blogspot.com/ It raises funds for CMV research if purchased through the National CMV Disease Registry at www.unlimitedpublishing.com/cmv

To read about my CMV awareness work along with internationally known CMV experts, visit the Times Herald Record article: www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313

Let me know what I can do to help you raise a CMV prevention message.

Sincerely,

Lisa Saunders
I am a full-time writer for the State University of New York at Rockland, a member of its Speakers Bureau and a STOP CMV and Congenital CVM Foundation representative as well as a member of the National CMV Disease Registry. To learn more about the work of the country’s leading CMV experts, visit: http://www.congenitalcmv.org/foundation.htm

My short TV news interview: www.wusa9.com/news/health/story.aspx?storyid=80502&catid=28

Other CMV Parents willing to be contacted available through the STOP CMV Action Network at: http://www.stopcmv.com/ STOP CMV was founded by Janelle Greenlee of Sunnyvale, California, the mother of twins, Riley and Rachel, born with congenital CMV in 2003.

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

Sources of CMV and CMV Prevention Facts:

CMV CDC site: http://www.cdc.gov/cmv/

“Washing our hands of the congenital cytomegalovirus disease epidemic”: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379

"Knowledge and Practices of Obstetricians and Gynecologists Regarding Cytomegalovirus Infection During Pregnancy --- United States, 2007": www.cdc.gov/mmwr/preview/mmwrhtml/mm5703a2.htm

2006 PubMed Central article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1779612

Article quoting OB/GYN why CMV prevention isn't discussed in Fit Pregnancy Magazine, June/July 2008 issue: Protect Your Baby From A Tot-Borne Virus or visit: www.fitpregnancy.com/yourbaby/babycare/40723077.html?subsection=baby_health_development

For more information about congenital CMV and how you can protect your pregnancy, contact Gail J Demmler MD, Professor of Pediatrics at Baylor College of Medicine, Director of Congenital CMV Disease Registry, Clinic and Research Program at gjdemmle@texaschildrenshospital.org or visit: www.bcm.edu/pedi/infect/cmv. The Registry supports CMV research, disseminates information and provides a parent support group. Registry: (832) 824-4387.

The 2008 Congenital CMV Conference was co-sponsored by the CDC and the Congenital CMV Foundation. The CDC co-organizer, Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, can be reached at mcannon@cdc.gov

The other 2008 Congenital CMV Conference co-sponsor, CMV Foundation founder, Lenore Pereira, Ph.D., Professor, Microbiology and Virology, Cell and Tissue Biology Department, University of California San Francisco, can be reached at lenore.pereira@ucsf.edu, or visit www.congenitalcmv.org/ which includes Members of the Scientific Advisory Committee with their contact information. Dr. Pereira has studied immune responses to CMV infection and molecular biology of viral glycoproteins for over 25 years.

Prevention through hand-washing and hand sanitizers: “It is best to wash your hands with soap and clean running water for 20 seconds. However, if soap and clean water are not available, use an alcohol-based product to clean your hands. Alcohol-based hand rubs significantly reduce the number of germs on skin and are fast acting.” See: http://www.cdc.gov/cleanhands/

“If soap and running water are not available, you may use alcohol-based hand gel.” See http://www.cdc.gov/ncbddd/pregnancy_gateway/infection.htm) For a hand sanitizer to be effected, the Food and Drug Administration (FDA) recommends a concentration of 60% to 95% ethanol or isopropanol, See http://www.cdc.gov/ncidod/EID/vol12no03/05-0955.htm

My Mom Gets Up at 5 a.m. to Stop #1 Birth Defects Virus

2009-04-11T04:41:00.000-07:00

Elizabeth and I on last family vacation

Several times a week, my mom, Lisa Saunders of Suffern, N.Y., wakes up around 5 a.m., and logs into her AOL account, hoping to make a difference in another mother's life that morning. She isn't online shopping, or surfing the Web for funny YouTube videos, she is desperately trying to spread awareness about the #1 viral cause of birth defects, congenital cytomegalovirus (CMV), the virus that eventually took my younger sister's life when she was only 16-years-old.

Because of her determination to prevent the spread of this virus, which causes more birth defects than Down syndrome, my mom takes time off of work, without pay, to talks at the Centers for Disease Control and Prevention (CDC), to nursing organizations, colleges such as Johns Hopkins, and other groups, to explain how to avoid contracting CMV.

My younger sister, Elizabeth, is the reason my mom sacrifices her time and energy to warning other mothers how to prevent the virus that handicapped her child. Besides writing to politicians, OB/GYNs, and connecting with other mothers of children with CMV through Facebook and other socialnetworks around the world, my mom has also written a humorous book, "Anything But a Dog! The perfect pet for a girl with congenital CMV," to warn others about the virus.

My mom writes:"The moment Elizabeth was born, I felt a stab of fear. My immediate thoughtwas 'Her head looks so small, so deformed.' The neonatologist declared, 'Your daughter has profound microcephaly--her 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'sbirth defects were caused by congenital cytomegalovirus (CMV)--a virus that may have no symptoms for the mother, known as a 'silent virus,' or it maypresent itself with mild to severe flu-like symptoms to a mother during pregnancy."

More than half of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists admitted they don't routinely caution their patients how to avoid the virus. Women who care for young children areat a greater risk for catching CMV because preschool children are the majority of the carriers. Although it is usually harmless to healthy individuals, it can be devastating to a developing fetus.

If you are interested in hearing more about my mom's mission to spread awareness by reaching one mother at a time, if that's what it takes, you can contact her directly at saundersbooks@aol.com or read this story about her in a New York paper at:

http://www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313

Her blog, http://congenitalcmv.blogspot.com/, contains links to the CDC's Web site and other organizations for more facts about CMV.

Thank you for your consideration.

Jackie Saunders

Mom's bio: Lisa Saunders is a full-time writer for the State University of New York at Rockland, a member of its Speakers Bureau and is a STOP CMV and Congenital CVM Foundation representative. A Cornell University graduate, she is the author of the humorous memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV" as well as "Ride a Horse, Not an Elevator" and "Ever True: A Union Private and His Wife." Lisa and her husband, Jim, reside in Suffern, New York, with their Beagle/Bassett Hound. See Lisa's short TV news interview about CMV at: www.wusa9.com/news/health/story.aspx?storyid=80502&catid=28
See her books and articles at http://www.authorlisasaunders.com/

Source info about CMV:

CDC: http://www.cdc.gov/cmv/

Other CMV Parents willing to be contacted about CMV are available through the STOP CMV Action Network at: http://www.stopcmv.com/ STOP CMV was founded by Janelle Greenlee of Sunnyvale, California, the mother of twins, Riley and Rachel, born with congenital CMV in 2003.

“Washing our hands of the congenital cytomegalovirus disease epidemic”: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379

Knowledge and Practices of Obstetricians and Gynecologists Regarding Cytomegalovirus Infection During Pregnancy --- United States, 2007: www.cdc.gov/mmwr/preview/mmwrhtml/mm5703a2.htm

The 2006 PubMed Central article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1779612

Article on CMV in Fit Pregnancy Magazine, June/July 2008 issue, Article: Protect Your Baby From A Tot-Borne Virus or visit: www.fitpregnancy.com/yourbaby/babycare/40723077.html?subsection=baby_health_development

For more information about congenital CMV and how you can protect your pregnancy, contact Gail J Demmler MD, Professor of Pediatrics at Baylor College of Medicine, Director of Congenital CMV Disease Registry, Clinic and Research Program at gjdemmle@texaschildrenshospital.org or visit: www.bcm.edu/pedi/infect/cmv. The Registry supports CMV research, disseminates information and provides a parent support group. Registry: (832) 824-4387.

The other 2008 Congenital CMV Conference co-sponsor, CMV Foundation founder, Lenore Pereira, Ph.D., Professor, Microbiology and Virology, Cell and Tissue Biology Department, University of California San Francisco, can be reached at lenore.pereira@ucsf.edu, or visit www.congenitalcmv.org/ which includes Members of the Scientific Advisory Committee with their contact information. Dr. Pereira has studied immune responses to CMV infection and molecular biology of viral glycoproteins for over 25 years.

Prevention through hand-washing and hand sanitizers: “It is best to wash your hands with soap and clean running water for 20 seconds. However, if soap and clean water are not available, use an alcohol-based product to clean your hands. Alcohol-based hand rubs significantly reduce the number of germs on skin and are fast acting.” See: http://www.cdc.gov/cleanhands/ “If soap and running water are not available, you may use alcohol-based hand gel.” See http://www.cdc.gov/ncbddd/pregnancy_gateway/infection.htm) For a hand sanitizer to be effected, the Food and Drug Administration (FDA) recommends a concentration of 60% to 95% ethanol or isopropanol, See http://www.cdc.gov/ncidod/EID/vol12no03/05-0955.htm

Letter to TV Producers about CMV--H1N1 Not Only Virus to Fear

2009-04-11T04:33:00.000-07:00

The H1N1 virus (swine flu) isn't the only virus pregnant women need to guard against.

Your audience would probably be interested to know how to protect their unborn children from the #1 viral cause of birth defects--congenital CMV (cytomegalovirus), which causes more birth defects than Down syndrome. Few women have heard of it and half of OB/GYN's surveyed admitted they don't warn their patients about it.

I can help you pull together a panel of congenital CMV experts and parents with children disabled by CMV to discuss how careful hand-washing and refraining from sharing utensils and towels with toddlers can reduce the chances of pregnant women contracting the virus.

I am the parent representative of the Congenital CMV Foundation and a STOP CMV rep. I didn’t know about CMV prevention until my daughter, Elizabeth, was born disabled by the virus in 1989. The moment I saw her, I felt a stab of fear—her head was so small, so deformed. The neonatologist said, “If she lives, she will never roll over, sit up, or feed herself.” He was right. By her 16th birthday, Elizabeth had survived several bouts of pneumonia, seizures and major surgeries. Weighing only 50 pounds, she looked odd to strangers, but her cheerful, soul-capturing smile made her lovely to my husband and me. Two months later, she died suddenly during a seizure.

I was invited to speak at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community of scientists and families about Elizabeth’s life. Mothers approached me after my speech, holding their young children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"

Fewer than half (44%) of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists (ACOG) in 2007 reported having counseled their patients how to prevent CMV infection despite these figures from the CDC:

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

• Each year, about 30,000 children are born with congenital CMV infection

• About 1 in 750 children is born with or develops permanent disabilities due to CMV

• About 8,000 children each year suffer permanent disabilities caused by CMV (See: www.cdc.gov/cmv).

According a 2006 survey reported in the article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," of the 643 women surveyed about their CMV awareness, only 22% had heard of it and most of those could not correctly identify modes of CMV transmission or prevention.

CMV infection is very common in day care settings, but CMV usually does not harm the children who become infected. However, pregnant women who become infected with CMV are at high risk of passing the infection to their fetuses, who it can harm. Pregnant women can help prevent CMV by hand-washing and by refraining from kissing young children around the mouth.

The direct costs of caring for CMV-disabled children are estimated at $1-$2 billion annually.

My two minute TV news interview about CMV: www.wusa9.com/news/health/story.aspx?storyid=80502&catid=28

In an effort to warn those who have never heard of congenital CMV, I wrote a light-hearted memoir about my daughter’s life with her lazy, old devoted canine, called, “Anything But a Dog! The perfect pet for a girl with congenital CMV.” It raises funds for CMV research if purchased through the National CMV Disease Registry. I also write about congenital CMV on my blog at: http://congenitalcmv.blogspot.com/

I am a full-time writer for the State University of New York at Rockland Community College, a member of its Speakers Bureau and a Cornell University graduate.

Please let me know if you would like the contact information for the country's leading CMV experts as well as the parents who have said they are willing to come on the show with their children (whose birth defects range from mild deafness to severe disabilities like my daughter).

To read about my CMV awareness work along with advice from internationally known CMV experts (one, Dr. Demmler-Harrison, said she would come on your show and I'm sure the others would if asked), visit the Times Herald Record article: www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313

Sincerely,

Lisa Saunders

Suffern, NY 10901

845-574-4244 (W)

saundersbooks@aol.com

http://www.authorlisasaunders.com/

Other sources of congenital CMV information:

The contact information of other CMV Parents willing to come on the show with their children is also available through the STOP CMV Action Network at: http://www.stopcmv.com/ STOP CMV was founded by Janelle Greenlee of Sunnyvale, California, the mother of twins, Riley and Rachel, born with congenital CMV in 2003.

To learn more about the work of the country’s leading CMV experts, visit: http://www.congenitalcmv.org/foundation.htm

CMV CDC site: http://www.cdc.gov/cmv/

“Washing our hands of the congenital cytomegalovirus disease epidemic”: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379

"Knowledge and Practices of Obstetricians and Gynecologists Regarding Cytomegalovirus Infection During Pregnancy --- United States, 2007": www.cdc.gov/mmwr/preview/mmwrhtml/mm5703a2.htm

2006 PubMed Central article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1779612

Article quoting OB/GYN why CMV prevention isn't discussed in Fit Pregnancy Magazine, June/July 2008 issue: Protect Your Baby From A Tot-Borne Virus

For more information about congenital CMV and how you can protect y our pregnancy, contact Gail J Demmler-Harrison MD, Professor of Pediatrics at Baylor College of Medicine, Director of Congenital CMV Disease Registry, Clinic and Research Program at gjdemmle@texaschildrenshospital.org, (832) 824-4387 or visit: www.bcm.edu/pedi/infect/cmv. The Registry supports CMV research, disseminates information and provides a parent support group. Demmler-Harrison said, “I have spent my entire medical professional career studying the effects of congenital CMV on children and helping these children and their families who have been touched by congenital CMV. It is the most common congenital infection in this country, yet ironically, most people have never heard of CMV, until it affects them personally.” Anything But a Dog! The perfect pet for a girl with congenital CMV raises funds for CMV research if purchased through the National CMV Disease Registry at: www.unlimitedpublishing.com/cmv

The 2008 Congenital CMV Conference was co-sponsored by the CDC and the Congenital CMV Foundation. The CDC co-organizer, Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, can be reached at mcannon@cdc.gov He is the co-author of "Washing our hands of the congenital cytomegalovirus disease epidemic,” which can be seen at: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379 Drs. Cannon and Davis state: “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.”

The other 2008 Congenital CMV Conference co-sponsor, CMV Foundation founder, Lenore Pereira, Ph.D., Professor, Microbiology and Virology, Cell and Tissue Biology Department, University of California San Francisco, can be reached at lenore.pereira@ucsf.edu, or visit www.congenitalcmv.org/ which includes Members of the Scientific Advisory Committee with their contact information. Dr. Pereira has studied immune responses to CMV infection and molecular biology of viral glycoproteins for over 25 years. She said, "Ultimately, we hope that awareness will lead to universal testing of pregnant women and their babies, improved therapies, and vaccines for prevention of disease.”

Quotes and advice:

One OB/GYN was quoted in FitPregnancy magazine as saying, "The list of things we're supposed to talk about during women's first visit could easily take two hours and scare them to death.”

In order to reduce the spread of CMV infection, women of childbearing age should refrain from kissing their children around the mouth, sharing food and utensils with them, and they must wash hands their hands diligently with soap and water after wiping runny noses, changing diapers, etc. The CDC states: “If soap and running water are not available, you may use alcohol-based hand gel.” For alcohol-based hand sanitizers to be effective, the Food and Drug Administration (FDA) recommends a concentration of 60% to 95% ethanol or isopropanol.

“It is important to remember that CMV is most commonly spread in the family setting. Reason being is that in the home environment, families are more casual about hygiene and for instance may share eating and drinking utensils, food and beverages, or be hurried during diaper change and forget to immediately wash hands afterwards,” states Carol M. Griesser, R. N., Research Nurse and Clinical Coordinator, Congenital CMV Longitudinal Studies, National Congenital CMV Disease Registry, Baylor College of Medicine, Texas Children's Hospital.

Griesser suggests ways to keep the home and daycare environment safer: “Unlike some other viruses, cytomegalovirus is a very fragile virus that usually does not live on a surface beyond about 30 minutes time. Active CMV can be destroyed or rendered inactive by washing any contaminated objects with a 10% bleach solution (followed by rinsing the object). Objects that can't withstand the bleach solution disinfectant method, such as stuffed animals and pillows, should be put outside in direct sunlight for about a couple of hours.”

Prevention through hand-washing and hand sanitizers: “It is best to wash your hands with soap and clean running water for 20 seconds. However, if soap and clean water are not available, use an alcohol-based product to clean your hands. Alcohol-based hand rubs significantly reduce the number of germs on skin and are fast acting.” See: http://www.cdc.gov/cleanhands/ “If soap and running water are not available, you may use alcohol-based hand gel.” See http://www.cdc.gov/ncbddd/pregnancy_gateway/infection.htm) For a hand sanitizer to be effected, the Food and Drug Administration (FDA) recommends a concentration of 60% to 95% ethanol or isopropanol, See http://www.cdc.gov/ncidod/EID/vol12no03/05-0955.htm

Preventing birth defects virus--CMV (cytomegalovirus)

2009-03-11T03:41:00.000-07:00

Through my public speaking, articles and book, Anything But a Dog! The perfect pet for a girl with congenital CMV, I am trying to prevent the #1 viral cause of birth defects, congenital CMV (cytomegalovirus), which causes more disabilities than Down syndrome.

My daughter was born severely disabled by it in 1989 and since her death in 2006, I've been distressed to learn that pregnant women are still not being warned that many toddlers carry this virus in their saliva (and other bodily fluids). Women need to be taught not to kiss their children around the mouth, share food with them, and to wash hands diligently after wiping runny noses, etc.

I was invited to speak at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community scientists and families about my daughter Elizabeth. Mothers approached me after my speech, holding their children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"

More than half of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists (ACOG) admitted they don't routinely caution their patients about CMV. One was quoted in FitPregnancy magazine as saying "The list of things we're supposed to talk about during women's first visit could easily take two hours and scare them to death.”

For government information about CMV, visit the Centers for Disease Control and Prevention (CDC) at: www.cdc.gov/cmv/

The following is a short about my daughter Elizabeth Saunders and CMV prevention:

“Elizabeth: Forever Sweet 16 (because I caught CMV when pregnant)”

The moment Elizabeth was born, I felt a stab of fear. My immediate thought was "Her head looks so small — so deformed."

The neonatologist declared, "Your daughter has profound microcephaly — her 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) — a virus that may have no symptoms for the mother, known as a "silent virus," or it may present itself with mild to severe flu-like symptoms to a mother during pregnancy.

The Centers for Disease Control and Prevention (CDC) estimates that about one in 150 children is born with CMV infection and approximately one in 750 is born with or develops permanent disabilities because of it. CMV is the #1 viral cause of mental retardation and hearing loss—more common a cause of disabilities than Down syndrome.How and why did I catch this virus that I had barely heard of? I read the CMV literature. It stated that women who care for young children are at a higher risk for catching it as preschoolers are the majority of carriers. The virus is spread through bodily fluids such as saliva and urine. Pregnant women need to be careful not to kiss young children on or around the mouth or share food or towels with them. Hands must be washed after wiping runny noses, diaper changes, etc. The CDC states: “If soap and running water are not available, you may use alcohol-based hand gel.” For alcohol-based hand sanitizers to be effective, the Food and Drug Administration (FDA) recommends a concentration of 60% to 95% ethanol or isopropanol.

Why didn’t my OB/GYN tell me about CMV and how to prevent contracting it? While I was pregnant with Elizabeth, I not only had a toddler of my own, but also ran a licensed daycare center in my home. I felt sick at what my ignorance 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.

It took about a year, but I eventually stopped praying that I'd be struck dead by lightening 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, the Book of Psalms, and a couple of Valium! We were eventually able to move ahead as a happy, "normal" family.

Sixteen years after her birth, I awoke feeling so proud of Elizabeth on her birthday. She had fought hard to stay with us in the land of the living, surviving several bouts with pneumonia, seizures and surgeries. Weighing only 50 pounds, she looked odd to strangers as a result of her small head and big adult teeth, but she was lovely to us with her long, thick brown hair, large blue eyes and soul-capturing smile. Although Elizabeth was still in diapers, and could not speak or hold up her head, she was still a very happy little girl, with a love of adventure— long car rides being one of her favorite activities. She especially loved going to school and being surrounded by people, paying no mind to the stares of other children who approached her in public. She smiled at anyone who would stroke her hair or cheek. When she wasn't busy, she sat propped on our couch watching cartoons with a big, lazy dog we got from an animal shelter.

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. We called 911."We met her ambulance at the hospital. The medical staff did all they could, but she was gone. After they unhooked her from everything, my husband Jim and I took turns holding her. While holding Elizabeth on his lap, Jim looked down into her partially open, lifeless eyes and cried, "No one is ever going to look at me again the way Elizabeth did." I knew he was right. No one adored us as much as Elizabeth.

It has been three years since we lost Elizabeth (1989-2006). At times I miss her so much I can barely breathe. Yet at other times, I feel happy for her — never again will I see that look of terror in her eyes as a seizure begins and she can't catch her breath. Never again will she be cold or sick. For the remainder of my days Elizabeth will be forever "Sweet Sixteen."Today, my sorrow is gradually being replaced by a passion to prevent others from going through what Elizabeth did. To learn more about CMV prevention and emerging treatments, see pictures of Elizabeth with her devoted old dog, or to read an excerpt of my memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV", visit my Web site at http://www.authorlisasaunders.com/

Please help me stop the spread of CMV! If you would like me to speak to your group about CMV prevention, please email me at: saundersbooks@aol.com

Lisa Saunders, Suffern, NY
The Times Herald Record wrote about my CDC speech, work in CMV prevention, and included quotes from internationally known CMV experts in this article: http://www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313

To watch my short TV news interview about CMV, please click into: http://www.wusa9.com/video/default.aspx?aid=70445&storyid=80502

To hear me for 52 minutes, listen to my radio interview at: http://www.achieveradio.com/archplayer.php?showname=Fearlessly%20Speaking%20%20with%20Jacqueline%20Wales&ShowURL=http://audio.achieveradio.com/fearless-fifties/Mar-08-2009-at-02-00PM---Fearlessly_Speaking.mp3

Book Prevents Birth Defects

2009-03-11T03:35:00.000-07:00

Preventing birth defects by memoir

You may have seen the big news item published by Reuters (Dec. '08) about hearing loss and congenital CMV (cytomegalovirus)--the #1 viral cause of birth defects, which causes more disabilities than Down syndrome. Although largely preventable, OB/GYNs do not routinely warn their pregnant patients how to avoid contracting CMV.

I am the parent representative of the Congenital CMV Foundation and wrote my light-hearted memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus), recently published by Unlimited Publishing LLC, in an effort to teach the public how to spare their unborn children from congenital CMV and to raise funds for CMV research. Through the use of humor, honesty, a series of disastrous pets and a big, homeless dog's devotion to my severely disabled daughter, my book is beginning to attract an audience that has never heard of CMV. In the closing chapter, I include highly useful resources, contacts and support for anyone whose life is touched by CMV. For an excerpt, see: http://anythingbutadog.blogspot.com/

I was invited to speak at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community scientists and families about my daughter Elizabeth who was born with severe cerebral palsy and mental retardation in 1989 as a result of congenital CMV. Mothers approached me after my speech, holding their children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my doctor warn me about CMV?"

Publisher: www.unlimitedpublishing.com/saunders

Author: If you would rather pay by check or PayPal, write to me at saundersbooks@aol.com

ABOUT ME:
I am a full-time writer for the State University of New York at Rockland Community College, a member of its Speakers Bureau and the Congential CMV Foundation parent representative and a STOP CMV area rep. My husband Jim and I live in the lower Hudson Valley with our beagle/Basset hound.

To see a write-up about my speech at the CDC, my efforts in CMV prevention and quotes from the doctors I work with, see: http://www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313

To watch my very short news interview (1.5 min.) about CMV, click into: http://video.aol.com/video-detail/coping-with-cmv/3443071507

To listen to a long radio interview (52 min): http://www.achieveradio.com/archplayer.php?showname=Fearlessly%20Speaking%20%20with%20Jacqueline%20Wales&ShowURL=http://audio.achieveradio.com/fearless-fifties/Mar-08-2009-at-02-00PM---Fearlessly_Speaking.mp3

Please help me prevent birth defects!

Sincerely,

Lisa Saunders
Suffern, NY
http://www.authorlisasaunders.com/

Hadar and Deanie Have Fun

2009-02-11T18:04:00.001-08:00

Times Herald Record Raises CMV Awareness

2009-01-24T04:35:00.000-08:00

FOR IMMEDIATE RELEASE
January 26, 2009
Lisa Saunders
Suffern, NY

saundersbooks@aol.com

Doctors Don’t Teach Prevention of #1 Birth Defects Virus MORE COMMON THAN DOWN SYNDROME

Pregnant Women Unaware Saliva of Young Children Potentially Harmful to Unborn

Suffern, N.Y. --On Jan. 21, the Times Herald Record published interviews with internationally known CMV experts about the #1 viral cause of birth defects--congenital cytomegalovirus (CMV), which is more common than Down syndrome. Most women have never heard how to protect themselves from contracting it during pregnancy.

The article, “What every pregnant woman needs to know,” by Deborah J. Botti, which includes an interview with Michael J. Cannon, Ph.D., a research epidemiologist at the Disease Control and Prevention (CDC ), addresses the controversy between CMV researchers regarding the benefits of routinely screening pregnant women for the disease. There is, however, little controversy about CMV’s devastating toll and the need for a prevention message.

Excerpt: “According to the CDC, CMV causes more permanent disabilities than Down syndrome, fetal alcohol syndrome, spina bifida or neural tube defects; yet, few people have heard of it. CMV is responsible for an estimated 400 deaths and about 8,000 children born with permanent disabilities each year.
“And CMV could potentially be responsible for far more disabilities because congenital CMV can only be conclusively diagnosed within the first three weeks of birth, and sometimes symptoms aren't seen for months or even years.
"’Nobody's even measured this yet in terms of mild learning disabilities," says Cannon of the virus that can cause hearing loss, vision loss, neurodevelopmental disabilities, small head size, growth delays and problems with the spleen, liver and lungs.” See full article, which includes photos of a little girl disabled by congenital CMV along with her mother, Lisa Saunders, Stop CMV and Congenital CMV Foundation parent representative, at: http://www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313

To hear the CDC’s podcast about CMV prevention that is available for use by the media, listen to: Staying Healthy When a Baby's on the Way (0:59 minutes)

In December, Reuters raised awareness of the disease in the article, "Mom's infection raises risk of infant hearing loss," seen at http://www.reuters.com/article/healthNews/idUSTRE4BM4RV20081223

Contacts: For more information about the article, contact reporter, Deborah J. Botti, at anybotti@hvc.rr.com. For more information about congenital CMV, visit http://www.cdc.gov/cmv/ or contact Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, at mcannon@cdc.gov; Gail J Demmler-Harrison MD, Professor of Pediatrics at Baylor College of Medicine, Director of Congenital CMV Disease Registry, Clinic and Research Program, at gjdemmle@texaschildrenshospital.org or visit www.bcm.edu/pedi/infect/cmv or call (832) 824-4387; or contact Congenital CMV Foundation founder, Lenore Pereira, Ph.D., Professor, Microbiology and Virology, Cell and Tissue Biology Department, University of California San Francisco, at lenore.pereira@ucsf.edu, or visit www.congenitalcmv.org/ which includes Members of the Scientific Advisory Committee with their contact information. Dr. Pereira has studied immune responses to CMV infection and molecular biology of viral glycoproteins for over 25 years. To contact a parent willing to speak about their child’s experience with congenital CMV, e-mail Lisa Saunders, author of the humorous memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV," at saundersbooks@aol.com or visit http://www.stopcmv.com/ to find a STOP CMV representative near you.

“Anything But a Dog! The perfect pet for a girl with congenital CMV,” raises funds for CMV research and parent support if purchased through the Registry at www.unlimitedpublishing.com/cmv

CDC Releases CMV E-Cards

2009-01-08T03:12:00.001-08:00

This link has CMV prevention e-cards to send to your friends plus podcasts to listen to:
http://www.cdc.gov/Features/Cytomegalovirus/

Reuters Article: Congenital CMV

2009-01-02T04:26:00.000-08:00

Reuters recently published an article about the #1 viral cause of birth defects, congenital CMV (cytomegalovirus). See "Mom's infection raises risk of infant hearing loss" at http://www.reuters.com/article/healthNews/idUSTRE4BM4RV20081223

I am the mother of a daughter disabled by congenital CMV. I was never warned how to prevent contracting this virus even though it is a more common cause of disabilities than Down syndrome. I am the parent rep for the Congenital CMV Foundation and spoke at the international 2008 Congenital CMV Conference at the Centers for Disease Control and Prevention (CDC) in Atlanta. I would like to see OB/GYNs warn their patients about CMV and teach them the CDC’s recommendations for avoiding it (careful handwashing, being cautious around the saliva of young children, etc). If people are interested in learning more about my daughter's life with congenital CMV; a big, homeless dog's devotion to her, and the latest news on CMV prevention and treatment, they can view the National Congenital CMV Disease Registry's special edition of my humorous memoir, “Anything But a Dog! The perfect pet for a girl with congenital CMV,” on http://www.unlimitedpublishing.com/cmv/ If copies are purchased through that link, a percent of the profits are donated to congenital CMV research and parent support.

Lisa Saunders
Suffern, New York
www.authorlisasaunders.com

CDC, Congenital CMV (cytomegalovirus) and "Anything But a Dog!"

2008-11-21T02:32:00.000-08:00

I have just returned from speaking at an international conference held at the Centers for Disease Control and Prevention (CDC) in Atlanta. I am a mother who was not warned how to protect my unborn child from the #1 birth defects virus, congenital CMV (cytomegalovirus). OB/GYNs still do not warn women about it and I'm trying to change that in the United States. Below is a press release I have put together with additional contact information if you feel you can make this into a story (or at least a mention)!

IMMEDIATE RELEASE:
Lisa SaundersSuffern, NY
saundersbooks@aol.com

CDC Raises Awareness of #1 Birth Defects Virus--MORE COMMON THAN DOWN SYNDROME

Pregnant Women Unaware Saliva of Young Children Potentially Harmful to Unborn

Suffern, NY. The largest international gathering ever of clinicians and researchers focused on the prevention and control of congenital cytomegalovirus (CMV)—the #1 viral cause of mental and physical handicaps—at the Centers for Disease Control and Prevention.

The 2008 Congenital CMV Conference was held in Atlanta, GA, on November 5-7. More than 250 attendees came from 20 countries and included virologists, epidemiologists, pediatricians, immunologists, perinatalogists, maternal-fetal medicine specialists, health education specialists, advocacy experts, OB/GYNs, parents and grandparents. The countries represented included Israel, Italy, France, Portugal, U.K., Belgium, The Netherlands, Sweden, Denmark, New Zealand, Australia, Ukraine, Canada, China, India, Japan and others.

Lisa Saunders of Suffern, NY, author and Congenital CMV Foundation Parent Representative, spoke at the Conference. She said that the moment her daughter Elizabeth was born, she was devastated because her head was so small and deformed. She was never warned that she had put her pregnancy at risk by working in daycare.

Lisa states, "Seeing all of those scientists and health practitioners who have spent much of there career working on CMV, and even those who are just beginning, erased all those years of feeling alone with what this little publicized disease did to my daughter and to my family. I was touched when one scientist told me that working with molecules can be lonely work, but hearing me speak and reading my story gave her inspiration." (Saunders' humorous memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV," raises funds for CMV research and parent support if purchased through the Congenital CMV Disease Registry at www.unlimitedpublishing.com/cmv )

According to the CDC (www.cdc.gov/cmv)
#Every hour, congenital CMV causes one child to become disabled
#Approximately 8,000 children each year suffer permanent disabilities caused by CMV.

The CDC recommends that pregnant women practice frequent hand-washing, especially after diaper changes, and avoid kissing young children on the mouth and sharing food, towels or utensils with them. (Congenital CMV precautions are also listed in their Pregnancy Information site at: www.cdc.gov/ncbddd/pregnancy_gateway/infection.htm).

CONTACTS/MORE INFO:For more information about congenital CMV and how you can protect your pregnancy, contact Gail J Demmler MD, Professor of Pediatrics at Baylor College of Medicine, Director of Congenital CMV Disease Registry, Clinic and Research Program at gjdemmle@texaschildrenshospital.org or visit: www.bcm.edu/pedi/infect/cmv. The Registry supports CMV research, disseminates information and provides a parent support group. Registry: (832) 824-4387. The book, “Anything But a Dog! The perfect pet for a girl with congenital CMV,” may be purchased through them at www.unlimitedpublishing.com/cmv Copies are available to members of the working press by contacting 800-218-8877 or news@unlimitedpublishing.com

The 2008 Congenital CMV Conference was sponsored by the CDC and the Congenital CMV Foundation. For more information, contact Lenore Pereira, Ph.D. at lenore.pereira@ucsf.edu. The Foundation Web site, www.congenitalcmv.org/ includes Members of the Scientific Advisory Committee with their contact information. You may contact the Conference co-organizer, Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, at mcannon@cdc.gov

“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,” stated Drs. Cannon (of the CDC) and Davis in their article, “Washing our hands of the congenital cytomegalovirus disease epidemic,” available on: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379 Hear the brief CDC/CMV podcast at:: http://www2a.cdc.gov/podcasts/player.asp?f=7926

Mothers and Scientists Combat Birth Defects Virus

2008-05-24T02:49:00.000-07:00

CDC Raises Awareness of #1 Viral Cause of Disablities--More Common Than Down Syndrome

Suffern, NY. In an effort to prevent the #1 viral cause of mental and physical handicaps, an international community of scientists, academics, practitioners, and families will gather to discuss congenital CMV research findings and how they can be translated into public health action.

The 2008 Congenital CMV Conference will be held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, on November 5-7. http://www.cmvconference2008.com/

According to the CDC:

#Congenital CMV (meaning present at birth) is as common a cause of serious disability as Down syndrome, fetal alcohol syndrome, and neural tube defects

#Every hour, congenital CMV causes one child to become disabled

#Approximately 1 in 150 children is born with congenital CMV infection #Approximately 8,000 children each year suffer permanent disabilities caused by CMV.

Lisa Saunders of Suffern, NY, author and Congenital CMV Foundation Parent Representative, will speak at the Conference. She said, “The moment my daughter Elizabeth was born, I felt a stab of fear—her head was so small, so deformed. I was never warned that I put my pregnancy at risk by working in daycare.” Elizabeth is pictured above. For information about her new book, Anything But a Dog! The perfect pet for a girl with congenital CMV, visit: http://www.authorlisasaunders.com/ See her mission at: http://www.hvbiz.biz/health/health09220801.php

“We expect the 2008 Congenital CMV Conference will raise awareness of birth defects in the broad medical community and the general public. And ultimately, we hope that awareness will lead to universal testing of pregnant women and their babies, improved therapies, and vaccines for prevention of disease,” said, Lenore Pereira, Ph.D., Conference Co-Organizer and Founder, Congenital CMV Foundation.

CMV is found in body fluids, including urine, saliva, breast milk, blood, tears, semen, and vaginal fluids. The CDC recommends that pregnant women practice frequent hand-washing, especially after diaper changes, and avoid kissing young children on the mouth or cheek and sharing food, towels or utensils with them. See brochure: www.cdc.gov/cmv/resources/CMV_Brochure_Eng.pdf Hear podcast: www2a.cdc.gov/podcasts/player.asp?f=7926

“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,” state Drs. Cannon and Davis. See article http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379

CONTACTS/MORE INFO:

The 2008 Congenital CMV Conference is sponsored by the CDC and the Congenital CMV Foundation. For more information, contact Lenore Pereira, Ph.D. at lenore.pereira@ucsf.edu or visit http://www.cmvconference2008.com/. The Foundation Web site, www.congenitalcmv.org/ includes Members of the Scientific Advisory Committee with their contact information. You may contact the Conference co-organizer, Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, at mcannon@cdc.gov

For more information about congenital CMV and how you can protect your pregnancy, contact Gail J Demmler MD, Professor of Pediatrics at Baylor College of Medicine, Director of Congenital CMV Disease Registry, Clinic and Research Program at gjdemmle@texaschildrenshospital.org or visit: www.bcm.edu/pedi/infect/cmv. The Registry supports CMV research, disseminates information and provides a parent support group. To donate/contact the Registry, call (832) 824-4387.

There have been recent breakthroughs in helping unborn children if their mothers become infected with CMV. Treatment of CMV infected women with intravenous CMV hyperimmune globulin is showing promising results. See Passive Immunization during Pregnancy for Congenital Cytomegalovirus Infection

Others affected by CMV willing to be contacted by the media:

Angela Davis of Cape Coral, Florida, is the mother of Chloe born in 2003. “I was so careful during my pregnancy, doing everything I could to protect her and WHAM out of nowhere—like lightning striking. It seemed so unfair that no one felt her life was significant enough to give the necessary precautions.” Angela stated that if she’d been warned, she wouldn’t have changed diapers or shared food and drinks with her children. Speaking of the pregnancy complications of toxoplasmosis, Angela continued: “It seems kind of silly that they tell you not to change the cat litter but forget to tell you not to change the baby.” Chloe has microcephaly, cerebral palsy, brain damage, deafness and autistic-like behaviors. Web: http://web.mac.com/luvmykidz/congenitalcmvchildren E-mail: angie-davis@COMCAST.NET

Janelle Greenlee of Sunnyvale, California, is the mother of twin sisters, Riley and Rachel, born in 2003. Janelle, one of the first mothers to start a CMV Awareness campaign in the United States, began her efforts while her daughters were infants, sometimes cuddled on her chest while she wrote online. "We hope that women, families and friends will become familiar with the CMV virus and will take vigilant steps to prevent infection. We believe that it is better for women and their families to learn about CMV well prior to pregnancy so that they will never have to learn of it when it is too late, like many of our families have." Riley has cerebral palsy and is profoundly deaf, while Rachel has cerebral palsy, microcephaly, seizure disorder, G-tube, visual impairment and is also profoundly deaf. Meet Riley and Rachel at http://www.rileyandrachel.com/. “Stop CMV” T-shirts are available through Janelle’s Web site at http://www.stopcmv.com/ email: stopcmv@yahoo.com

Lori LeClair of Ontario, Canada, is the mother of Camryn born in 2002. Until Camryn's birth, Lori never heard of CMV and had she known, she said, "I would have been insane about washing my hands, carrying around hand sanitizer 100 % of the time. I also would have asked to be tested for CMV antibodies prior to getting pregnant." Camryn is profoundly mentally retarded, legally blind, spastic quadriplegia, non-verbal, began having seizures at the age of two, has reflux, wears diapers, eats via feeding tube and she has lost hearing in left ear. gleclairc543@rogers.com

Tracy McGinnis of Omaha, Nebraska, is the mother of Brendan, born in 2004. "When my son was diagnosed with congenital CMV at three weeks of age, I had never heard of it before. After the first few months of this challenging and painful diagnosis, I became determined to do all I could to keep this from happening to other children. I have since established the Brendan B. McGinnis Congenital CMV Foundation, named in honor of my son. Its primary focus is to raise public awareness about CMV and to educate women to demand to be tested for CMV prior to pregnancy.” Brendan has severe cerebral palsy, microcephaly, global developmental delays, deafness in one ear, sleep issues, dental issues, a feeding tube, is nonambulatory, nonverbal and most recently developed seizures at age three and a half years old. See the non-profit Brendan B. McGinnis Congenital CMV Foundation, a 501 (c)(3), at http://www.cmvfoundation.org/. T-shirts to raise awareness are now available. E-mail: mcginnis@cmvfoundation.org

Lynn Pickus of Plainview, New York, is the mother of Noah born in 2004. Lynn is trying to establish a CMV awareness day. She learned that in order to create one, "a bill of sorts must be passed. I have contacted my congressman's office and they told me it needs to start in the senate. I have been in contact with my senator's office but I was told that it is very difficult to get an Awareness Day because there are so many diseases. I passed along CMV information to the person in charge of health issues, and she will approach the judiciary committee/office with it. If anyone is interested in contacting their elected officials visit www.usa.gov/Contact/Elected.shtml to find out who yours are. Maybe you’ll contact someone who will do something. The more phone calls, the better chance we have.” Noah has a moderate to severe hearing loss, right hemiparisis due to cerebral palsy, seizure disorder, feeding disorder, and global developmental delays. LKelli@aol.com,

Carmen Burton of England is the mother of Natalie born in 1993. "Natalie knows she is one of the lucky ones because she can walk and communicate and learn things, even though she finds it harder than her classmates, but she still hates CMV. She likes talking to people about it—she knows it can't be cured, but she wants people to understand how she feels, and she wants the doctors to find a cure so that more babies don't get it. I get so angry when I go to the Dr.'s surgery or hospitals and see posters for Rubella, Meningitis and Toxoplasmosis but nothing about CMV. As the Coordinator of the Congenital Cytomegalovirus Association UK, my aim is to raise enough money to get a CMV Awareness poster in every Dr's, midwife, and baby clinic in the UK." Natalie is profoundly deaf and has a Cochlear Implant. She has epilepsy, learning difficulties, mixed muscle tone, sleep and eating issues. She is currently in assessment for vestibular dysfunction and Asberger Syndrome. See the Congenital Cytomegalovirus Association UK at http://www.cmvsupport.org/ Email: carmen.burton@ntlworld.com

Tina Konczol, of Walker, Louisiana, is the mother of Chelsea born in1996. “Even though it's too late for our children, we would love to see progress made on preventing other children from being born with congenital CMV.” Tina is the “owner” of the parent-member CMV LISTSERV, http://listserv.syr.edu/archives/cmv.html. If you have a child with congenital CMV, join the group to ask questions, give advice, or to simply feel less alone in the daily joys and struggles of raising your child. Chelsea had severe spastic quadriplegia cerebral palsy, epilepsy, progressive hearing loss, and was legally blind, profoundly mentally retarded, non-verbal, non-ambulatory, etc. She died just before her fourth birthday. tinak2001@aol.com

Christi Wahnschaffe of Puyallup, Washington, is the mother of Cameron born in 1995. “I fully believe that I could have prevented CMV had I been made aware of the risks. It is so frustrating to me that the world is so hesitant to educate women about CMV—we could be saving babies from severe disabilities or even death.” Cameron is profoundly deaf, has developmental delays, Speech Language Impairment, Obsessive Compulsive Disorder and Attention Issues. wahnfam@msn.com

Jenny McPherson of Augusta, Georgia, is the mother of Abby born 2004. “I had never heard of CMV before I had Abby. I believe all pregnant women should be screened for CMV and be educated about the risks and prevention of CMV during their initial prenatal visit.” Abby has a VP shunt due to hydrocephalus, profound hearing loss, vision impairment, seizure disorder, feeding disorder, and profound cognitive and developmental delays. jennyandarchie@knology.net

Jenny Bailey of Houston, Texas, is the mother of Caroline born in 1990. "Caroline was the first baby in Houston to get the ganciclovir treatment, and other than profound hearing loss, she has been fine. The treatment stopped the progress of the disease in her central nervous system in its tracks. In fact, she began reading at age three, was mainstreamed at five, and graduated from high school this year after taking five AP classes senior year and working at Barnes & Noble." Caroline had the cochlear implant surgery at age 14. jmb101@comcast.net

Chantelle Rowe of Australia is the mother of son Kaiden, born July 4, 2007. "I wish I had known about CMV when I was pregnant. I was one of those women who stuck to all the rules, down to a T. I only ate what I was told to and I stayed away from EVERYTHING I was told to avoid. It just felt like the biggest slap in the face when it happened to me. I was very: 'WHY ME???'" Kaiden is doing very well, but has moderate/severe loss to left ear and profound to right. Chantelle raises awareness through her site: www.myspace.com/cmvawareness E-mail: channy_1985@yahoo.com.au

To see photos of other children born with CMV, view the CMV poster available on http://www.cmvinformation.com/

*Lisa Saunders is a writer for the State University of New York at Rockland. Her new book, Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus), is the moving and sometimes humorous account of Elizabeth’s life with pets, and includes the latest news on CMV prevention and treatment plus comments from scientists and other parents affected by congenital CMV. Advance copies are available to members of the working press by contacting 800-218-8877 or news@unlimitedpublishing.com. Contact Lisa Saunders directly for an interview or an autographed copy at saundersbooks@aol.com. To see a photos of Elizabeth Saunders,visit http://www.authorlisasaunders.com/, to see list of mothers willing to be interviewed, visit Lisa's CMV blog at: http://congenitalcmv.blogspot.com/

###

National Health Observances

2008-05-16T13:56:00.000-07:00

Lynn lkelli@AOL.COM received this e-mail about creating National Health Observances
The Office of Disease Prevention and Health Promotion (ODPHP) has forwarded your message to the National Health Information Center (NHIC). healthfinder.gov and NHIC are information and referral services sponsored by ODPHP.

The general criteria for including a health event in the National Health Observances (NHO) Calendar are:
-- national status, evidenced by official sponsorship by a national organization or recognition by the U.S. Congress, the White House, or the U.S. Department of Health and Human Services
-- materials for public health program planners, either on the Internet or in print, and contact information for obtaining them
-- educational information for the public
-- health prevention-related observance that does not promote commercial entities or professions.

Please note that NHIC does not sanction, approve, qualify, validate or name national health observances. The service we provide is in compiling and publishing awareness dates once the observances have achieved national status and the sponsoring organizations are able to submit proof, usually an official declaration or proclamation, when requesting the event be added to the NHO calendar. An example of an official proclamation designating a national health awareness can be viewed at: http://www.whitehouse.gov/news/releases/2008/04/20080401-6.html. You may wish to contact your state representative for consultation on how to establish and declare a national health observance.

Help Protect Babies from CMV

2008-04-12T05:08:00.000-07:00

How you can help protect unborn children from CMV:
1.)Print out the brochure found on the CDC Web site and ask your doctors to post it in their waiting rooms. See Brochure on CMV http://www.cdc.gov/cmv/resources/CMV_Brochure_Eng.pdf

2.) Donate to an organization that supports CMV research, disseminates information and provides a parent support group, contact the National Congenital CMV Disease Registry at (832) 824-4387 or visit www.bcm.edu/pedi/infect/cmv.

2.5) Donate to the Congenital CMV Foundation. They support research and education: http://www.congenitalcmv.org/donate.htm

3) Contact some of the following groups with CMV information. Perhaps they'll post in their newsletter/magazine and Web sites. There are also many online newsletters for pregnant Tell Ask them to put CMV on the list that pregnant women should avoid. Ask them to tell doctors to warn pregnant women about CMV and how they can avoid it. Remind them it is the leading viral cause of mental retardation and hearing loss.

American College of Obstetricians and Gynecologists, http://www.acog.org/409 12th St., S.W., PO Box 96920Washington, D.C. 20090-6920(202) 638-5577

March of Dimes, (914) 997-4488, http://www.marchofdimes.com/
1275 Mamaroneck AvenueWhite Plains, NY 10605

MOPS, Mothers of Preschoolers. http://www.mops.org/

4)Write letters to the editor of your local papers and magazines
5)Get on shows like "Montel Williams"
6)Write letters to representatives in Congress.
7)Take a leadership role in organizing parent groups. The Baylor parent group is the place to start.

A mother who made a difference offers ideas:
Marti Perhach marti.perhach@gbs-intl.org, whose daugther Rose was stillborn as a result of Group B Strep infection, has given me many ideas such as: "Starting your own health observance month just for CMV (I’m not sure if you can do that as an individual) on the National Health Observance Calendar is the best free promotion. http://www.healthfinder.gov/library/nho/ . This page on the Jesse Cause website http://www.thejessecause.org/pages/awareness.html has some ideas. As to the Health Observance Calendar, you would need to have a website for them to refer to or materials to mail or that they can download. October is Pregnancy and Infant Loss Awareness Month in case that is a promotional tool you can use. It is not on the Health Obs. Calendar but is recognized by Compassionate Friends and the SIDS alliance. You can also start pregnancy board threads or contact women’s health websites. I sent the CMV info to a South African website where the moms are promoting Prenatal Infection month with us.
The CDC is putting together a website section and materials on prenatal infections that should be ready in the next few months. The American College of Nurses and Midwives were very receptive. Can you partner with the company that manufactures the CMV test to help get out the information? Ideally I would like to have a brochure in both the prenatal and postnatal gift bags that moms get although that’s a very expensive project—hopefully someday soon! I don’t know of any publishers unless you got a sponsor like Lysol (they sponsored a poster on the CDC website) or a medical company that does patient information (can’t think of any right now but there’s always literature at the doctors’/pharmacy.)Doctors need CME credits so maybe you could get a company to sponsor a lecture on CMV info and the doctor gets their continuing education credit.
Marti's group: ~Group B Strep International~ Group B Strep International was formed in April 2006 by John MacDonald and Marti Perhach who each lost a daughter to Group B strep (GBS). ...www.groupbstrepinternational.org/about.html

CMV moms who said they will help raise awareness:
Lynn Pickus, Lkelli@AOl.comMom to Noah, age 2, born with congenital CMV and big sister Ashley, age 4. My hope is that through our efforts we can prevent other families from the effects that CMV has on an unborn child.
Amanda McClaren, mandyshea1974@yahoo.comSon Marcus passed away from congenital CMV complications at the age of three.

Secondary CMV Infection

2008-03-19T01:57:00.000-07:00

Abby, , terryjamesmom@VERIZON.NET writes:
I do not mean to start a panic, or be the bearer of bad news, however I am concerned that OBGYNs are simply repeating information they were taught in med school and are not current with the newer studies being done on CMV. During the past decade there have been several studies showing that secondary or recurrent infections can be passed to the fetus and can result in just as severe disabilities. Here are a few links. Maybe your daughter could print them out and give them to her doctors so that they take her conserns seriously and give her and the baby every advantage possible.

Intrauterine Transmission of Cytomegalovirus to Infants of Women with Preconceptional Immunity http://content.nejm.org/cgi/content/full/344/18/1366

Secondary Maternal Cytomegalovirus Infection A significant Cause of Congenital Disease http://pediatrics.aappublications.org/cgi/content/full/107/5/1227

Symptomatic Congenital Cytomegalovirus Infection in Infants Born to Mothers With Preexisting Immunity to CMV http://pediatrics.aappublications.org/cgi/content/full/104/1/55

Visit Congenital CMV Foundation

2008-02-22T10:36:00.001-08:00

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The Congenital CMV Foundation is sponsoring the 2008 Congenital CMV Conference on November 5 -7, 2008 (CCC ’08) at the Centers for Disease Control (CDC) Harkin Global Communications Center in Atlanta, Georgia. Co-sponsored by the CDC and Public Health Foundation Enterprises (PHFE), CCC' 08 will examine current topics in Congenital CMV, including vaccine initiatives, diagnosis of maternal, fetal, and newborn infection, and preventative treatments. This public forum will be conducted by families, daycare providers and medical professionals and policy makers to address issues of awareness, prevention, development of a registry for surveillance, standards of care for children with birth defects, and personal activism.
Click here to view the conference agenda.
Listen to the Centers for Disease Control and Prevention's Podcasts, Staying Healthy When a Baby’s on the Way:
A Cup of Health with CDC
A Minute of Health with CDC

Worldwide CMV Links for parents

2008-02-22T10:36:00.000-08:00

Carmen Burton, Founder of the Congenital CMV Association (UK), compiled this valuable list of worldwide CMV links for parents:

Congenital CMV Association (UK)
Established over 20 years ago and run on a voluntary basis by the parents of CMV children. We can put parents in touch with others. We distribute a regular newsletter and send out any other useful or interesting information. We spread Awareness and help professionals with research etc. Website: http://www.cmvsupport.org/ Email: mailto:support@cmvsupport.org?subject=Inquiry or congenitalcmv.association@ntlworld.com

European Congenital Cytomegalovirus Initiative:
The European Congenital CMV Initiative (E.C.C.I.) is a network of professionals based throughout Europe with a united interest in congenital cytomegalovirus (CMV) infection. The group is composed of virologists, epidemiologists, immunologists, obstetricians and paediatricians whose aim is to promote awareness of congenital CMV and support and encourage research initiatives into this important infection. Information on latest research, info etc.
Website: http://www.ecci.ac.uk/

National Congenital CMV Disease Registry – Baylor (USA but includes parents from all over the world):
The registry is a research program working to learn more about those children born with symptoms of congenital CMV disease. Aside from research, the National Congenital CMV Disease Registry provides an outreach program consisting of this web site, written educational material, and an annual newsletter, CMV Updates for the purpose of educating health care professionals, families, and all others interested in learning more about congenital CMV disease. Additionally, we established and maintain a parent support network as a forum where parents of children congenitally infected with CMV can contact other parents dealing with the challenges of raising a child born with CMV. Parents from all over the world including UK.
Website: www.bcm.tmc.edu/pedi/infect/cmv

Congenital Cytomegalovirus Foundation (USA):
Preventing congenital CMV through Awareness, an American website hosted by professionals and parents together. A wealth of information, features, advice, links etc
Website: http://www.congenitalcmv.org/home.htm

Stop CMV (USA--but includes parents from all over the world):
Set up by the mum of CMV twins, this website offers a wealth of information and support materials. Get info and links, buy stop CMV t-shirts, download posters, web banners etc. Become a stop CMV rep – they would love to spread out to the rest of world. A very active Awareness Group and website. Website: http://www.stopcmv.com/

CMV Kids:
A new site coming soon, so watch this space:
Website: http://stop:cmvkids.com

CMV Listserv – members from all over the world!
“Our mailing list is for parents and caregivers of children with congenital CMV, therapists, doctors and nurses who work with our children, those with CMV, and those researching ways to conquer cCMV. Our email list provides a forum to learn from each other, share our frustrations and rejoice in our triumphs...to know there is someone out there who "really knows" what we are going through. Parent to parent contact – lots of answers to all those stupid questions from parents who have been there, done that! Sign up, or search the archives at
Website: http://listserv.syr.edu/archives/cmv.html

CMV Blog (USA):
Hosted by a mum whose CMV daughter died when she was 16, you can share your story, participate in parental discussion groups and find additional resources on CMV prevention. Website: http://congenitalcmv.blogspot.com/

Anything But A Dog:
A book written by Lisa Saunders (see blog above) about her CMV daughter and their dog, a sad, but funny, heart moving true story of Elizabeth and her dog. A great way to spread CMV Awareness. (A donation from every sale will be made to the UK CMV Association)Website: to http://www.unlimitedpublishing.com/dog

Photo caption: Elizabeth (age 15) and big sister Jackie (18) on the boardwalk at night--our last family vacation before Elizabeth died during a seizures in 2006.

CONTAGIOUS LIVING

2008-02-19T06:05:00.000-08:00

Abigail Hannaford-Ricardi is the mother of two children with multiple cognative, physical and medical special needs. She was asked to give the sermon at the First Unitarian Church of Worcester, Massachusetts on April 15, 2007. Her remarks, inspired by her experiences with her son Terry, who has congential CMV disease,are reprinted here.

FIRST READING:
Psalm 139 (13-16)

For thou didst form my inward parts,
Thou didst knit me together in my mother’s womb.
I praise thee for thou art fearful and wonderful.
Wonderful are thy works!
Thou knowest me right well,
My frame was not hidden from thee,
When I was being made in secret,
Intricately wrought in the depth of the earth,
Thy eyes beheld my unformed substance:
In thy book were written, every one of them,
The days that were formed for me
When as yet there was none of them.

SECOND READING:
He is a Miracle

I’m going to tell you about my son Terry today, and hopefully you don’t feel like you’ve just sat down for a 24 hour bus ride next to the granny with the wallet photos. Rest assured I don’t carry a wallet - not enough room for photos. That’s why I’ve got 12 volumes of scrapbooks about my kids. This second reading is from a scrapbook page I made two Thanksgivings ago. Terry is my hero, and I don’t say that lightly. There is no living human being whom I admire more than Terry. I’d like to share with you my top ten list of why he is a miracle and my hero.

1. HE IS ALIVE: Terry was born to a homeless, IV drug user who received no pre-natal care. Since doctors didn’t know the umbilical cord was wrapped around his neck, it was a vaginal delivery. He underwent withdrawal from cocaine and opiates (which is lethal to 3-5% of newborns if untreated). Terry was born with a cytomegalovirus infection, and worst of all he was one of only 10% with the infection who has the actual congenital CMV disease (similar to Rubella syndrome). 20% of children born with the disease die and 90% of those who survive are severely disabled. Terry suffered damage to his brain, heart, liver, blood, eyes and ears. Despite being full term, Terry spent six weeks in the neonatal ICU, and was then discharged into a medical foster home and provided with 40-70 hours per week of home nursing care.

Today Terry is an alive and active teenager.

2. HE CAN EAT: When Terry moved into that foster home, a suction machine and feeding pump went with him. Failure to thrive and malnutrition are some of the leading causes of death in congenital CMV disease. Despite advancing the caloric density of his formula and feeding him through a tube Terry had poor weight gain. When he came to us at age three and a half he was still on an all liquid diet. He was diagnosed with severe failure to thrive and at his four year old physical he weighed just 25 pounds (in the 0% and below the 50% for an 18 month old).

Today Terry’s weight and height are in the normal range. He has a voracious appetite. If any of you don’t know whom Terry is, just look around during coffee hour for the person eating the most cookies and I guarantee you that will be my son.

3. HE CAN SEE: When Terry was in the neonatal unit he was noted to have eye shaking. Later he would be diagnosed with scarring and incomplete closure of the eyes, outward eye turn, missing nerve tissue connecting the eyes to the brain, and suspected damage to the vision processing areas of the brain. Those of you who knew us when we first started coming here will remember that Terry used to have to touch vocal cords in order to identify people.

Today Terry can identify people in photos and read alphabet letters just ¼ inch high. He is a miracle.

4. HE CAN COMMUNICATE: Congenital CMV is the leading cause of non-hereditary deafness in children. Over 65% of kids with the disease develop hearing loss. Terry is deaf. Some of the only vibrations Terry can respond to are below those tested on standard audiogram charts, beyond the pain threshold and at a level that would cause deafness in a hearing person. Terry also has autism, which greatly impacts his ability to use language.

Today Terry has a sign language vocabulary of about 500 words and also uses a pictorial communication system to communicate with family, friends and staff.

5. HE CAN BREATHE FREELY: CMV can invade the lungs and cause a fatal pneumonia in both infants with the congenital disease and in adults who are immune compromised. Terry was in respiratory distress when he was born. He was diagnosed with a floppiness and collapse of the main airway and many other problems including asthma. Sinusitis, bronchitis, pneumonia -Terry averaged 13 respiratory infections per year.

Today the frequency and severity of Terry’s respiratory infections and asthma attacks have greatly decreased and he is usually full of energy. He was just seven years old the first time he climbed Mt. Wachusett with this church

6. HE CAN WALK: That may seem obvious, but then again, breathing, seeing and eating probably did too. 25-39% of children born with CMV disease have abnormal motor function. Terry’s central nervous system was not spared. His tone was so abnormal that the hospital called in an occupational therapist the day he was born. When he was just two months old specialists wrote that he most likely had a mixed, quadriplegic form of cerebral palsy. At age three and a half he could not walk, could not sit without supporting himself, and tired of holding his head up.

Today Terry continues to receive occupational and physical therapy several times a week, but he can walk, swing, dance and climb. He is a miracle.

7. HE CAN THINK: Congenital CMV is the most common infectious cause of mental retardation and a leading cause overall. Terry had an abnormally small head circumference and seizures. Just before turning eight he tested at the 16-18 month old level and was diagnosed as severely mentally retarded.

Today Terry’s head size is normal he hasn’t had a seizure in over ten years, and his cognitive skills test in the six year old range. He can read several words, write his name, count, match and sort items. His sense of direction and memory for routes far surpasses mine and he likes to take apart and rebuild mechanical devices.

8. HE CAN WORK: For several years Terry required total care for dressing feeding and toileting. He was difficult to reach, withdrawing from the world to self-stim, rock, spin, and laugh to himself.

Today Terry loves work tasks. At school he has had mail delivery, stocking and recycling jobs, as well as assisting with shopping, simple cooking and laundry chores. He has been working in the school greenhouse potting plants and making horticulture crafts, works in the seat weaving shop and restocks the snack wall and soda machine in the school snack shop. He has become very competitive with his classmates, is proud of his accomplishments, loves to receive praise, and can’t wait to spend the money he earns.

9. HE IS STRONG: Terry has a genetic immune deficiency disease called hypogammaglobulinemia, an abnormally low concentration of the major component (85%) of all serum antibodies, leaving him susceptible to recurrent infections, scarring of the lungs, a painful form of arthritis, digestive problems and production of autoantibodies that attack his own tissues and blood cells. This condition is life threatening to people who are otherwise “normal,” it is bad news when a child with multiple disabilities has it. He used to miss more than 80 days of school a year due to illness.

Today Terry takes antibiotics every day, as he has for the past seven years. Since starting treatment, the changes in his health, stamina, physical growth and learning have been remarkable. He is stronger than he has ever been. He is a miracle.

10. HE HAS FRIENDS: For a long time Terry was more interested in wheels, shoes and door hinges than he was in any human being. Terry has autism with sensory motor integration disorder, obsessive/compulsive behavior and an attention deficit disorder.

Today, wheels and shoes can still distract Terry, but he has very genuine attachments to his friends. Whether it is sledding with Nathan, cooking with John, working with Ben, eating lunch with Joel, going to the YMCA with Katie or sleeping over at Sara’s house, Terry is involved. He asks for his friends when they are sick, and states that he wants to see them during school vacations. One of his very best friends is James – Terry has become an attentive and doting big brother!

SERMON: CONTAGIOUS LIVING

I want to begin by telling you my qualifications for being here today: I sent Reverend Merritt’s husband a card. In other words, I am not qualified. This just proves the old saying that “no good deed goes unpunished.” That’s right. After today the Merritt household will wonder why they don’t receive any more personal mail.
As much as I like to brag about my kids, I’m thinking that sermons should pertain to every day life, and most of you probably don’t live with someone whose physical brain has been ravaged by a virus. However, we all know and live with the metaphorical viruses that ravage our brains. I’m talking about the viruses that infect us with feelings of worthlessness, shame, anger, fear and despair. Learning how CMV was passed to Terry and how it affected him, has helped me to learn how we pass emotional viruses onto each other and how they affect us. Here is my second top ten list:

1. ONLY DON’T KNOW: This is actually a Buddhist saying. I’m not going to ask a show of hands on how many of you have cytomegalovirus. I’ll tell you. 50% of us in the US have it by the time we are 30, 90% of us have it by the time we die. So, if you don’t have it the people sitting on either side of you do. In talking about Terry, I risk him being discriminated against – so let me tell you upfront, you can’t get CMV from him. You get the virus from someone who has a new infection – and most people with one have no symptoms at all (although 10% have flu or cold like symptoms). You can’t tell by looking at someone. Avoiding children with multiple handicaps will not protect you.
This holds true for emotional viruses as well. You can’t avoid getting hurt by avoiding people with green skin. Yet our brains are wired to protect us. If we touch fire, we learn very quickly that we shouldn’t stick our hands into glowing red and yellow. Our brains want to use the same system to protect us from emotional hurt. I think this is where some prejudices originate. You can’t tell by looks.

2. YOU ALWAYS HURT THE ONES YOU LOVE: There are three times in life when a person is most likely to get a CMV infection. The first is as an infant or toddler from other drooling infants and toddlers. The second is as a teenager from that new special other you are kissing. The third time is when you are the parent of an infant or toddler. The population at greatest risk for having a child with congenital CMV is mothers of children below the age of 3. Junior comes home from daycare, where other toddlers are wearing diapers, mouthing toys, drooling, and sneezing. Mom, who wouldn’t wipe the nose, change the diaper, clean the drool, kiss away the tears, or finish the food of a strangers child, will do all those things for her own child. Or, if she’s pregnant and being hyper careful, maybe her partner is doing all those things.- and then her partner gets the virus, kisses mom and she gets it and mom passes it to her unborn baby. Did you notice, it all comes from friends or family?
Emotional viruses work the same way. I can be nice to most people most of the time. I can have endless patience for other people’s children, but the people closest to me get to see me when I’m being mean and impatient. The most hurtful things I’ve ever said, the ones I’ve regretted the most, I’ve said to my husband. Now if a mere acquaintance says something hurtful to you, it’s easy to shrug it off. That person doesn’t know you! However, if the person you love most, the one you’ve trusted with your most personal feelings says something hurtful, it cuts you to the bone. The people we love most can hurt us the most. Therefore to protect ourselves from future pain we should all avoid letting anyone get close to us…NO! Don’t do that.

3. MOST VULNERABLE =MOST HURT: I told you that the vast majority of people don’t have any symptoms from their CMV infection. However, in people who are immune compromised, such as those who are undergoing cancer treatments, have had organ transplants or are HIV positive, CMV can quickly lead to blindness, liver failure or a fatal pneumonia. CMV is an opportunistic virus. In a developing fetus, all the major systems can be damaged.
Likewise, emotional viruses are most damaging to the most vulnerable. Yet, it is this group that is most often the recipient of such viruses: The nerdy kid; the geeky guy; the over-weight housewife; the forgetful senior citizen. Emotional viruses are opportunistic. And here is the rub, while most of us would not blame someone for a physical ill, we do blame people for their emotional ills. “Get over it.” “She’s overly emotional, anyway!” “He needs to grow a thicker skin.” When we cause emotional hurts, sometimes instead of being sympathetic, we get defensive. We don’t always know who is most vulnerable. One out of every 100 babies born in the US has a CMV infection, but 90% of them will have no symptoms at birth and 75% never develop any symptoms. Yet 10% of those newborns will have severe, life threatening disease. Why are some more vulnerable and some unaffected? We don’t know.

4. DON’T JUDGE: According to the March of Dimes, congenital CMV leads to 8,000 permanent disabilities in the US every year. (By the way, that’s 2,000 more than Down syndrome). Epidemiologists know this from studies that test every baby born in select hospitals across the US. However, normally, newborns are not routinely tested for CMV, and unless the test is done within the first three weeks of life, a positive result is meaningless because the child could have been exposed after birth. The vast majority of congenital CMV cases are never diagnosed. Every year thousands of parents have children who have deafness, blindness, cerebral palsy, cognitive impairment, and/or epilepsy, and never know that CMV was the cause. Often the disabilities are blamed on something that was also caused by the CMV, such as the premature birth. As an adoptive mom, it’s hard for me to understand, but I can tell you that mothers of children with disabilities blame themselves. The guilt is huge. Sadly, often, their spouses, family and friends will also think, “She must have done something wrong during that pregnancy.”
Obsessive/compulsive disorder used to be considered a result of “maladaptive coping of past conflicts, abuse and anxiety” requiring long-term psychotherapy. Attention deficit/hyperactivity disorder used to be attributed to “bad parenting,” “willful defiance,” and “moral defectiveness.” (These definitions are all out of old textbooks, by the way). Autism for many years was thought to be caused by “maternal ambivalence” towards the child. We now know that these each have a biological basis. Why do I mention these conditions today? Because congenital CMV is associated with all three conditions, and my son has been diagnosed with all three. Thirty years ago, you would all have KNOWN that I was a terrible mother. The textbooks said so.
Being judged, especially misjudged, hurts. I always like to think I know stuff and I’m forever realizing that I don’t have a clue. I’m not going to tell you, “Don’t judge,” because, to be honest, I find myself judging people and their behaviors regularly. But we should all TRY not to judge others.

5. HURT GROWS AND SPREADS: Someone sneezes and a tiny particle is passed to another person, where it multiplies, spreads to the bloodstream, passes through the placenta and grows in a fetus, potentially damaging every developing part: liver, lungs, heart, GI tract, eyes, ears, brain… Not just the brain as the thinking organ, but everything it controls – muscles, breathing, sleep cycle, temperature regulation, puberty. Congenital CMV can cause tooth enamel defects, orthopedic problems and hernias. All this from one tiny little microbe.
Emotional viruses are the same – one small insult can ripple and magnify and spread. This is especially true with gossip. Once something leaves your mouth, whether in a germ filled sneeze or hurt filled words, you can’t take it back or control where it goes.

6. TREAT OR REAP: There is no cure for congenital CMV, but the sooner it’s identified, the sooner it can be treated, and the sooner you treat, the less damage it causes.
As an example, CMV is a leading cause of deafness. 65% of those born with the disease develop hearing loss, and once the loss starts it almost always progresses to the severe to profound level in the affected ear or ears. The majority of these kids are born hearing and pass the newborn hearing screen. However, by the second birthday, deafness has often set in. Because most cases of congenital CMV go undiagnosed, the hearing loss is unexpected and often not discovered until the child enters school. Now consider that the success of every intervention –hearing aides, sign language, speech therapy, cochlear implants, etc. - depends greatly on how early it can begin – when the developing language center of the brain is most accessible. Today there is an antiviral treatment that has been shown to stop or significantly lessen hearing loss in newborns with the disease. (It can also stop or reverse the major CMV killers too –liver failure, gastritis, anemia and pneumonia). But there is no opportunity to give it if the virus isn’t diagnosed.
Not surprisingly, the sooner emotional viruses are recognized and treated, the less the damage. I think a lot of lawsuits could be avoided if people learned to listen and say “I’m sorry.” Too often we let anger, guilt and fear get in the way, or we hope problems will just go away if we don’t say anything – much like parents of a disabled child first hope, “He’ll grow out of it.” Situations that could have been addressed. resolved and forgotten, linger and fester and mushroom until the losses are severe and irreversible.

7. POP GOES THE WEASLE: CMV stays in your body for life, but after the initial infection the immune system keeps it in check. This is why, without treatment it can be life threatening to those who are immune compromised. In times of stress the virus can reactivate. This is what happened to Terry’s birth mother. She was ill from the drug use, a Hepatitis B infection and probable HIV infection, had a severe CMV reactivation and passed the virus onto Terry. I have to tell you that kids born with CMV disease are not the hardiest bunch. Just when we think things are going smoothly we get a shock. Four years ago at age 13, Ronda was a lot like Terry, until the day she walked into a wall and it was discovered that the virus had reactivated in her eyes leaving her totally blind. Last year the virus reactivated in Ronda’s brain and she died at age 16. Sam is 11 and still with us, but two years ago the virus reactivated in his heart and lungs. This past winter he coded four times.
I want to read you the words of a parent written nine years after his premature daughter lived for 20 minutes and then died:
…the tragedy with Elise. It changed my life forever. I haven’t been the same since it affected me in a way I never felt possible. I am filled with so much hate, hate towards God and unimaginable emptiness it seems like every time we do something fun I think about how Elise wasn’t here to share it with us and I go right back to anger.
The family, friends and neighbors of this parent didn’t recognize his grief. They saw him as a steady worker, churchgoer, and devoted husband and father, yet this man shot ten girls in an Amish schoolhouse. We’ve all heard about the person who goes on a rampage in a post office, restaurant or school, but hidden anguish surfaces all the time on a much smaller scale in everyday life. I’m someone who hates confrontations, so I tend to swallow grief and praise myself for “not making issues out of ant hills” – except the ants are still there and to my embarrassment, I find that I tend to dredge them all up when I hit my breaking point.

8. KNOWLEDGE = POWER: Prior to today, how many of you can remember ever hearing about CMV? Well, in September of 2005 the Worcester Telegram and Gazette carried an article about an Italian study of congenital CMV. They offered hyperimmune globulin to pregnant women who tested positive for having a new CMV infection. In the study the drug cut the rate of mother-to-child transmission of CMV to just 3 %. In contrast, 50 % of the infected mothers who opted not to receive the treatment passed on the CMV to their unborn. The treatment is considered very safe and no adverse effects have been noted. Prevention of potentially severe birth defects.- this was great news! Guess how many American women have benefited from this treatment in the past 1 ½ years? I’ll give you a clue. 40,000 babies are born CMV positive in the U.S. every year. The answer? I don’t know of a single case (although I do know of a few U.S. women who received this treatment after ultrasounds and blood tests already showed fetal damage due to CMV).
Why is this? In Italy, where the study was done, all pregnant women are routinely tested for the virus several times during each pregnancy. The Italian public is more aware of the risks of congenital CMV. In the U.S. women are not routinely tested and most U.S. women have never heard of this virus. Most CMV infected babies are born to women who carefully followed their doctors’ advice. They got regular pre-natal care, took their vitamins with folic acid, quit smoking, avoided alcohol and over the counter medications, they didn’t handle raw meat or change the cat litter box, they left the house when the nursery was being painted and even stopped dying their hair. But, no one ever told them about precautions to avoid CMV, and now no one is telling women about a simple blood test and possible preventative treatment.
Knowledge gives us power to make changes. This is very true with preventing the spread of emotional viruses as well. I probably shouldn’t mention how ignorant I am…but I am, and I used to be much more clueless. When I was in college I picked up phrases like, “There goes the paddy wagon,” “Don’t be an Indian giver,” and “I think I’ve been gypped.” These phrases invaded my brain and I started spreading them around, completely ignorant of what ethnic slurs they were, until someone who really cared for me (my husband) pointed them out. Most of us don’t try to hurt others. Just like the parents in my CMV support group, we try to go out of our way to protect others from harm, but we have to be educated. We need to seek knowledge and to be open to change.

9. THERE IS ALWAYS HOPE: Specialists were not very hopeful when Terry was born, and they weren’t very hopeful 3 ½ years later when he came to live with us, and yet, as I shared with you, he far surpassed expectations. He is a miracle.
There are probably people in each of your lives that you just don’t expect much of. Now I’m not saying to surround yourself with people who make you miserable, but keep yourself open to the thought that people can change. Don’t avoid joining a committee you are interested in because you don’t think you can work with a particular member. Don’t assume someone can’t do something, just because they never have. People will surprise you. I’m very surprised to be here today. Barbara took a chance asking me to give a sermon. I’m a private person, and a fearful public speaker. This just goes to show that as bad as my “preaching” skills are, I’m even worse at saying “no.”

10. GOOD IS CONTAGIOUS: It’s hard not to smile when you see someone smiling, and it’s hard not to feel better when you are smiling. Scientific studies are now actually proving this. We can spread good viruses. I mentioned earlier that Terry has a condition called hypogammaglobulinemia. (That’s one word, 21 letters long, by the way). One of the treatments for that condition is a four hour monthly IV of gammaglobulin. This blood product is taken from the blood of 10,000 donors. You need that many to ensure that the recipient receives antibodies to all the bugs currently circulating. That to me is an amazing thing – so many people giving something that is then pooled together to support one individual. And, because gammaglobulin only lives for 20 to 30 days, the treatment needs to be repeated every 3 to 4 weeks.
When our younger son James had congestive heart failure and was awaiting his second open-heart surgery, people of this congregation pooled together to support us. There were days in which we felt that we were capsizing, when your actions buoyed us. And before your treatment could wear off, we would get another infusion, another call, card, visit or hot meal. Those repeated treatments sustained us until we landed back on dry ground. Thank you.
May you go out and spread the viruses of love, hope and joy. Be as contagious as possible and infect as many people as you can.

Protect unborn babies from CMV

2008-02-17T02:18:00.000-08:00

How you can help protect unborn children from CMV:

1. Write a letter to the editor of your local papers and magazines (they like to publish letters by their readers). If you're really ambitious, try writing the national media as well. Change the following sample letter to the editor to relect your story and contact information:

[Your name]
[Your address and contact info]

Dear Editor:

Did you know that when a pregnant woman kisses a young child on the cheek, she is risking mental retardation and hearing loss for her unborn child? That daycare workers are also putting their unborn children at risk? Most people don't, and when I was pregnant with my [child's name], I didn't know either.

Potentially thousands of children a year could be spared life-threatening disabilities if pregnant women were simply warned to avoid the bodily fluids of young children. According to the Centers for Disease Control and Prevention (CDC), 1 in 750 babies are permanently disabled by congenital CMV. CMV is more common than Down syndrome and is the leading viral cause of mental retardation and hearing loss.

[mention how you are personally affected by CMV or are upset that you know of women of child bearing age who have never heard of it]

According to Drs. Cannon (of the CDC) and Davis in their article, "Washing Our Hands Of The Congenital Cytomegalovirus Disease Epidemic,” “Perhaps no single cause of birth defects and developmental disabilities in the United States currently provides greater opportunity for improved outcomes in more children than congenital CMV. Given the present state of knowledge, women deserve to be informed about how they can reduce their risk of CMV infection during pregnancy...by missing prevention opportunities, we in the medical and public health communities are washing our hands of the congenital CMV disease epidemic…The virtual absence of a prevention message has been due, in part, to the low profile of congenital CMV.” See www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379 Drs. Cannon and Davis believe that ob-gyns do not routinely warn their patients of the disease because they don't realize how prevalent it is--many are not born with the obvious symptoms--hearing loss and developmental delays may not be obvious at birth. To learn more about CMV, see the brochure found on the CDC Web site http://www.cdc.gov/cmv/

The CDC recommends that pregnant women avoid kissing young children on the mouth or cheek, sharing food, towels or utensils with them, and frequently washing their hands—especially after diaper changes (rubber gloves are not enough). The CMV Registry adds that toys must be washed with disinfectant.

To see a short story published about one child who suffered and died as a result of congenital CMV, visit: recordonline.com - The silent virus that silenced Elizabeth [or put a link to your own child's story]. Thank you for your consideration.
Sincerely,
[your name and contact information again]

Other ways to raise awareness:
1.Print out the brochure found on the CDC Web site and ask your doctors to post it in their waiting rooms. See Brochure on CMV - In English - en Español (In Spanish)
2. Donate to an organization that supports CMV research, disseminates information and provides a parent support group, contact the National Congenital CMV Disease Registry at (832) 824-4387 or visit www.bcm.edu/pedi/infect/cmv. If you would like to make a tax deductible donation to them, please make checks payable to CMV Research Fund.

3) Contact some of the following groups with CMV information. Perhaps they'll post in their newsletter/magazine and Web sites. Ask them to put CMV on the list that pregnant women should avoid. Ask them to tell doctors to warn pregnant women about CMV and how they can avoid it. Remind them it is the leading viral cause of mental retardation and hearing loss.

American College of Obstetricians and Gynecologists, www.acog.org409 12th St., S.W., PO Box 96920Washington, D.C. 20090-6920(202) 638-5577

March of Dimes, (914) 997-4488, www.marchofDimes.com
1275 Mamaroneck AvenueWhite Plains, NY 10605

MOPS, Mothers of Preschoolers. http://www.mops.org/

Search out other Internet groups that reach women of child-bearing age

4)Get on shows like "Montel Williams"
5)Write letters to representatives in Congress.
6)Take a leadership role in organizing parent groups. The Baylor parent group is the place to start.
7) Lobby organizations like the March of Dimes to encourage them to pay more attention and give more effort toward congenital CMV.
8)Join the CMV Foundation mailing list

Marti Perhach marti.perhach@gbs-intl.org, whose daugther Rose was stillborn as a result of Group B Strep infection, has given me many ideas such as: "Starting your own health observance month just for CMV (I’m not sure if you can do that as an individual) on the National Health Observance Calendar is the best free promotion. http://www.healthfinder.gov/library/nho/ . This page on the Jesse Cause website http://www.thejessecause.org/pages/awareness.html has some ideas. As to the Health Observance Calendar, you would need to have a website for them to refer to or materials to mail or that they can download. October is Pregnancy and Infant Loss Awareness Month in case that is a promotional tool you can use. It is not on the Health Obs. Calendar but is recognized by Compassionate Friends and the SIDS alliance. You can also start pregnancy board threads or contact women’s health websites. I sent the CMV info to a South African website where the moms are promoting Prenatal Infection month with us.
The CDC is putting together a website section and materials on prenatal infections that should be ready in the next few months. The American College of Nurses and Midwives were very receptive. Can you partner with the company that manufactures the CMV test to help get out the information? Ideally I would like to have a brochure in both the prenatal and postnatal gift bags that moms get although that’s a very expensive project—hopefully someday soon! I don’t know of any publishers unless you got a sponsor like Lysol (they sponsored a poster on the CDC website) or a medical company that does patient information (can’t think of any right now but there’s always literature at the doctors’/pharmacy.)Doctors need CME credits so maybe you could get a company to sponsor a lecture on CMV info and the doctor gets their continuing education credit.
Marti's group: ~Group B Strep International~ Group B Strep International was formed in April 2006 by John MacDonald and Marti Perhach who each lost a daughter to Group B strep (GBS). ...www.groupbstrepinternational.org/about.html

Pregnant and you think you have contracted CMV?

2008-02-17T02:09:00.000-08:00

If you are pregnant and find out you are infected with CMV, chances are your child will not be infected. But, here is one mother's understanding, Abby at terryjamesmom@VERIZON.NET, of what an infected pregant woman can do (in response to a woman who wrote to her):

First of all: Don't panic. Only 40-50% of women who test postive for a CMV during pregnancy actually pass it onto the baby. Then only 10% of those babies infected are born symptomatic (with another 10-15% who later develope more minor symptoms such as hearing loss and learning disabilities). So the odds are clearly on your baby's side. More good news: There are two types of treatment options available to you that were not available just a couple years ago. So when you read the posts on here please remember that most of our kids never had the chances your baby has. (Also I think we tend towards the more disabled outcome only because families with kids who have few CMV issues don't really need us long term, so don't judge prognosis based on us). 1. The most promising treatment right now is hyperimmune globulin. The product is called Cytogam in the U.S. and Cytoect in Europe. The U.S. expert is Dr Stuart Adler at Virginia Commonwealth University. His e-mail is sadler@hsc.vcu.edu and his telephone is (804)-828-1807. This is his life's work so he would be happy to talk to you or your doctors. In Europe the expert to contact is Dr Giovanni Nigro. (I'm sorry I don't have his contact info, but I'm sure if you do an internet search it will come up). In 2005 these doctors ran a breakthrough study in which they offered hyperimmune globulin to pregnant women who tested positive for having a new CMV infection. In the study the drug cut the transmission of CMV to just 3%. In contrast 50% of the infected mothers who opted not to receive the treatment passed on the CMV to their unborn. The treatment is considered safe and no adverse effects have been noted. 2. If you find out that your baby already has CMV you can still get the above treatment (it has also been shown to reduce the damage done). You may also want to consider antiviral treatment while pregnant (this is usually now the treatment for babies born symptomatic), but it has been used with pregnant women whose babies show damage on ultrasounds and then show remarkable improvement after the mom has been given the antiviral treatment. This option is not without risks to your health so you'll want to discuss it carefully if the need arises to consider it. 3. I also wanted to let you know that there is another good support group on Yahoo at cmvcpparentlink and we currently have a mom from Portugal who is 24 weeks pregnant and just diagnoses with a primary CMV infection. So if you are looking for someone to talk to who may be able to share where you are at, she might be a good contact. Hope this helps. Please keep us updated on your progress and we will keep you in our prayers. Hugs, Abby, Mom to Terry, born 7/11/92 - cCMV, profound bilateral hearing loss, complex vision loss (optic disc colobomas, optic nerve hypoplasia), severe mental retardation, autism, ADD, OCD, neuromuscular problems, primary immune deficiency disease (no IgA, low IgG), H/O severe failure to thrive (resolved), bilateral hernias (repared), congenital heart defects (pulmonary stenosis and ASD, both resolved) H/O myloclonic seizures (inactive since age 2) and great big brother to:James, born 4/9/01 - Down syndrome, tetrology of Fallot (multiple heart defects, has had two open heart and several cardiac cath surguries, needs more of both), failure to thrive, Celiac disease, GIRD, tracheal stenosis (narrow airway swells shut when irritated)and best smile this side of the universe!

Fairy Tale inspired by the death of Elizabeth Saunders

2008-02-16T04:18:00.000-08:00

THE WOODCUTTER’S TALE
by Richard W. Avazian (Elizabeth's grandfather wrote this after her death)Illustrated by Elizabeth's aunt, Marianne Greiner . Elizabeth died as a result of congenital CMV complications.

Once upon a time long, long ago in a far-away land lived Patrius, a woodcutter, and his wife Matilda. They had a 19-year-old daughter, Filia and a ten-year-old son Stefan.

It came to pass that the countryside was ravaged by sickness accompanied by high fever that caused many to perish. Stefan was stricken and shortly became very ill. The woodcutter summoned the old midwife, a gray-haired woman who also served as a doctor. “Patrius, Matilda, I am sorry to tell you that Stefan is beyond my help and must soon die.”

Struck speechless by this pronouncement, they heard the neighing and hoof beats of horses outside their cottage. Patrius went out to discover that the Princess in her royal coach had stopped. “I was returning to my castle when I heard your son was sick. Bring me to him.” Patrius led the Princess inside and she beheld the dying Stefan. “Let me take him home with me and I will heal him. However, I will keep him with me as I have no sons after four years of marriage.” Although it broke their hearts, Patrius and Matilda agreed for they knew it was best for Stefan.

The Princess herself picked Stefan up to carry him to the carriage. As soon as the Princess lifted him, Stefan started to look better. The Princess placed him in the coach seat opposite her and the coach drove off, leaving the couple waving goodbye with tear-stained faces.

Life was not the same in the little cottage, although the family seemed closer together then ever before. Their shared grief was an invisible weight pressing upon their shoulders, made bearable only by the sharing.

Three days after Stefan’s departure, a white dove appeared and made a nest in their thatched roof. Strangely, the family felt comforted by the presence of the dove that never left their roof. Patrius always looked for it when he returned from his wood-cutting forays into the forest. Matilda and Filia often looked up when they were doing their outdoor chores to see if the dove was still there and to experience the sense of consolation and protection, which seemed to emanate from the dove.

After a few years, Filia married a cooper and moved to a village about ten miles distant.

Though they missed their daughter greatly, the couple now had the dove for company.

Finally, stricken with years, the old couple became weaker and weaker and sensed that they both were going to die. Patrius said, “Let us go outside, bring our bench and sit on it, hold hands and look at our dove.” Matilda agreed and they brought their bench outside. They settled themselves on the bench and faced their cottage, but were surprised to see that the dove was no longer on the roof. Finally growing too feeble to move, they heard the sound of horses’ hooves.

With their last breaths, they beheld the royal coach approaching. As the coach drew near, they saw a smiling Stefan inside, dressed in shining white garments and looking every inch a Prince. “Come home with me,” said Stefan. Overjoyed and amazed that they suddenly no longer felt feeble, the couple stepped into the coach. As the coach started to pull away, Patrius and Matilda looked back to see if their dove had returned. But the dove, no longer being needed, was gone.

This disappointment was replaced by their boundless joy at seeing how happy Stefan had been and by knowing they would be with Stefan forever in their new home.

For single page with illustrations, open Woodcutter with sketches edits less photos.doc