Thursday, September 29, 2016
Friday, September 2, 2016
Tuesday, August 23, 2016
Lisa Saunders and her books and videos created to prevent congenital cytomegalovirus (CMV)
ABOUT LISA SAUNDERS, CMV MOM
My daughter, Elizabeth, was born in 1989 severely disabled by congenital cytomegalovirus (CMV). I didn't know I was putting my pregnancy at risk by working in daycare and kissing my toddler around the mouth and sharing food and cups with her.
Elizabeth's life for 16 years, along with CMV prevention tips, is told through photographs in this short video set to the song, "Voice for Sam," by Debra Lynn Alt, former lead singer of Rolling Stone magazine's band (Click here to watch it).
Although I ran a licensed daycare center in my home, nowhere in the licensing literature was I warned about CMV and the extra precautions a women of childbearing age should take. I hope that changes soon as daycare workers are still largely unaware they are at greater risk for contracting this disease.
Elizabeth's life for 16 years, along with CMV prevention tips, is told through photographs in this short video set to the song, "Voice for Sam," by Debra Lynn Alt, former lead singer of Rolling Stone magazine's band (Click here to watch it).
Although I ran a licensed daycare center in my home, nowhere in the licensing literature was I warned about CMV and the extra precautions a women of childbearing age should take. I hope that changes soon as daycare workers are still largely unaware they are at greater risk for contracting this disease.
In 2015, Connecticut (where I live) became one of the few states in the U.S. to pass congenital CMV legislation (my work with legislators was featured in this News 8 segment and in Cornell’s Alumni Magazine (Sept/Oct 2015).
I am the parent representative of the Congenital Cytomegalovirus (CMV) Foundation and author of several books, including, "Anything But a Dog! The perfect pet for a girl with congenital CMV," which is currently being translated into Japanese by an organization raising awareness in Japan. I continue to write books containing CMV prevention education such as "Once Upon a Placemat: A Table Setting Tale" to remind families to refrain from sharing cups and utensils-- which is more important now that the CDC has removed those prevention suggestions from their website in 2016 (please contact the CDC to learn why!)
I created free, downloadable placemats featuring my placemat characters and CMV prevention along with a video introducing the characters and why moms shouldn't share cups and utensils with their children.
I am the parent representative of the Congenital Cytomegalovirus (CMV) Foundation and author of several books, including, "Anything But a Dog! The perfect pet for a girl with congenital CMV," which is currently being translated into Japanese by an organization raising awareness in Japan. I continue to write books containing CMV prevention education such as "Once Upon a Placemat: A Table Setting Tale" to remind families to refrain from sharing cups and utensils-- which is more important now that the CDC has removed those prevention suggestions from their website in 2016 (please contact the CDC to learn why!)
I created free, downloadable placemats featuring my placemat characters and CMV prevention along with a video introducing the characters and why moms shouldn't share cups and utensils with their children.
My Elizabeth died at the age of 16 during a seizure. I published my father's fairytale about losing a child, Surviving Loss: The Woodcutter's Tale, and include CMV prevention in that as well.
Please let me know how we can help each other raise a CMV prevention message.
Sincerely,
Sincerely,
Lisa Saunders, author/speaker
Parent Representative, Congenital Cytomegalovirus Foundation
PO Box 389, Mystic, Connecticut 06355
LisaSaunders42@gmail.com | http://congenitalcmv.org/ | www.authorlisasaunders.com | http://congenitalcmv.blogspot.
   |
 |
| Japanese news coverage about translating book, "Anything But a Dog! The perfect pet for a girl with congenital CMV," by Lisa Saunders into Japanese to teach Japanese families how to prevent disabilities cause by congenital CMV. |
Monday, July 18, 2016
Daycare Centers: #1 Birth Defect Virus, CMV (cytomegalovirus)
I am Lisa Saunders, the parent representative of the Congenital Cytomegalovirus (CMV) Foundation, and was a licensed daycare provider in Maryland in 1989. I had no idea I was putting my pregnancy at risk by caring for young children in my home. Nowhere in the licensing literature was there a mention of CMV, that I might want to have a blood test to determine if I had antibodies for it before becoming a child care provider, or how to protect myself from contracting it. My daughter, Elizabeth, was born severely brain damaged by congenital CMV and died 16 years later in 2006 during a seizure.
1. The article, "Group day care and cytomegaloviral infections of mothers and children," indicates that between 44 to 100% of two year olds at a single given time were shedding CMV. CMV is usually harmless to toddlers, but pregnant can contract it from them and pass it along to their unborn child.
2. CMV is the leading viral cause of birth defects. It causes mental retardation, liver disease, cerebral palsy, and deafness, causing more disabilities than Down syndrome, as a result of infection in pregnant women. Between 50% and 80% of adults in the U.S. are infected with CMV by 40 years of age. According to the CDC, in the U.S.: "About one out of every 150 babies are born with congenital CMV infection...about one in five babies with congenital CMV infection will be sick from the virus or will have long-term health problems." (See: http://www.cdc.gov/cmv/congenital-infection.htm)
3. According to the Centers for Disease Control and Prevention (CDC), "People who care for or work closely with young children may be at greater risk of CMV infection than other people because CMV infection is common among young children..." (see: http://www.cdc.gov/cmv/
5. Daycare.com does provide helpful CMV prevention tips and advice for daycare workers at: https://www.daycare.com/
6. The National CMV Foundation provides the following CMV prevention tips for "Care Giver Health" at: https://www.nationalcmv.org/cmv-prevention/caregiver-health.aspx
7. Will it make a difference if women are educated on CMV prevention?
Yes! According to two studies in the U.S, "Prevention of child-to-mother transmission of cytomegalovirus among pregnant women" (https://www.ncbi.nlm.nih.gov/
ADDITIONAL NOTES FROM LISA SAUNDERS:
I am still trying to get Connecticut's day care licensing webpage to include CMV prevention under its Disease and Prevention Section (http://www.ct.gov/oec/cwp/view.asp?a=4542&q=545170). I am also asking the national Occupational Safety and Health Administration (OSHA) office to provide a CMV prevention message for day care workers, the way they do for outdoor workers in regard to Zika (they sent out a newsletter stating: "QuickCards offer guidance on protecting outdoor workers from Zika virus").
Lisa Saunders is the parent representative of the Congenital CMV Foundation, which raises awareness about maternal testing for first infection during pregnancy, newborn testing, and the need to develop a vaccine. Saunders and her work to get Connecticut to pass a CMV bill was featured in Cornell’s Alumni Magazine (Sept/Oct 2015) and was widely covered in the media (News 8 at CT Capitol RE: CMV). Until states and/or the medical community provide CMV prevention education for child care providers and all women of childbearing age, Saunders continues to write and lecture on the topic. She is the author of the memoir, Anything But a Dog! The perfect pet for a girl with CMV (cytomegalovirus), which is also being released in Japan in December 2016. To educate entire families in a fun and memorable way, Saunders recently published the short booklet, booklet “Once Upon a Placemat: A Table Setting Tale,” which includes CMV prevention tips such as refraining from sharing dishes plus a free teaching tool kit (downloadable placemats for coloring and video).
Shortly after moving to Connecticut in 2010, I received a call from an anxious grandmother who said her grandson was just born disabled by congenital CMV. The baby's mother had been a pregnant college student interning at a Connecticut day care center while pregnant. She, too, had not been educated about CMV and how to protect her pregnancy.
According to the New York Times "CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed."
If you work in day care, have a child in day care, are pregnant or might become pregnant, there are 10 things you need to know (or do) about CMV (cytomegalovirus)
According to the New York Times "CMV Is a Greater Threat to Infants Than Zika, but Far Less Often Discussed."
If you work in day care, have a child in day care, are pregnant or might become pregnant, there are 10 things you need to know (or do) about CMV (cytomegalovirus)
1. The article, "Group day care and cytomegaloviral infections of mothers and children," indicates that between 44 to 100% of two year olds at a single given time were shedding CMV. CMV is usually harmless to toddlers, but pregnant can contract it from them and pass it along to their unborn child.
2. CMV is the leading viral cause of birth defects. It causes mental retardation, liver disease, cerebral palsy, and deafness, causing more disabilities than Down syndrome, as a result of infection in pregnant women. Between 50% and 80% of adults in the U.S. are infected with CMV by 40 years of age. According to the CDC, in the U.S.: "About one out of every 150 babies are born with congenital CMV infection...about one in five babies with congenital CMV infection will be sick from the virus or will have long-term health problems." (See: http://www.cdc.gov/cmv/congenital-infection.htm)
3. According to the Centers for Disease Control and Prevention (CDC), "People who care for or work closely with young children may be at greater risk of CMV infection than other people because CMV infection is common among young children..." (see: http://www.cdc.gov/cmv/
4. According to the scientific article, Cytomegalovirus as an occupational risk in daycare educators, "studies in industrialized countries have confirmed that children attending daycare have higher excretion rates of CMV than children not attending day-care and that horizontal transmission is common between children in daycare and their adult contacts" (see: http://www.ncbi.nlm.nih.gov/
5. Daycare.com does provide helpful CMV prevention tips and advice for daycare workers at: https://www.daycare.com/
6. The National CMV Foundation provides the following CMV prevention tips for "Care Giver Health" at: https://www.nationalcmv.org/cmv-prevention/caregiver-health.aspx
7. Will it make a difference if women are educated on CMV prevention?
Yes! According to two studies in the U.S, "Prevention of child-to-mother transmission of cytomegalovirus among pregnant women" (https://www.ncbi.nlm.nih.gov/
the rate of CMV transmission was reduced when women knew the precautions to take.
Dr. Demmler-Harrison, Director, Congenital CMV Disease Research, Clinic and Registry, states: “Studies have shown that women who know they are CMV seronegative, know they are pregnant, and know about their toddler's CMV shedding are the most likely to prevent CMV transmission and reduce their risk from over 50 percent during pregnancy to a risk of less than 5 percent during pregnancy. It is not likely that isolated instances of exposure to saliva or drool will result in transmission. Most studies suggest prolonged repeated exposures over time are important for CMV transmission.”
Dr. Stuart Adler of the CMV Research Foundation Inc., Richmond, VA, states, "Pregnant childcare employees should be informed about CMV, assess their risk by serologic testing or avoid if possible caring for children less than 2 years age for the duration of pregnancy," in his article,"Prevention of Maternal–Fetal Transmission of Cytomegalovirus" at http://www.
Dr. Stuart Adler of the CMV Research Foundation Inc., Richmond, VA, states, "Pregnant childcare employees should be informed about CMV, assess their risk by serologic testing or avoid if possible caring for children less than 2 years age for the duration of pregnancy," in his article,"Prevention of Maternal–Fetal Transmission of Cytomegalovirus" at http://www.
8. Sample Brochure for Day Care Providers: Utah, the first state to require congenital CMV prevention education, provides this brochure for childcare providers: http://health.utah.gov/cshcn/
9. Ask your state's health department webpage to include congenital CMV prevention. For example, Connecticut's Health Department has the following information: http://www.ct.gov/dph/cwp/view.asp?a=3138&q=527824.
10. WHAT ABOUT PREGNANT TEACHERS OR CARE GIVERS WORKING WITH A CHILD KNOWN TO HAVE CMV INFECTION?
"There are pregnant teachers and other care givers at our school who work closely with children known to have CMV infection. For their safety, should these employees be relieved from their duties in caring for these children?"
According to the National Congenital CMV Disease Registry: “Changing the duties of a teacher or care giver from children known to have CMV infection to other children may not reduce their risk of acquiring CMV. It is a common virus in all children. In fact, studies reveal that between 30 and 80% of children between the ages of 1-3 years of age who attend some form of group care are excreting CMV. In this setting transmission of CMV is usually transmitted from child-to-child by direct contact with bodily fluids such as saliva or urine. It also may be transmitted to care givers. Therefore it is wise for care givers in this type of setting to be aware of CMV and consider knowing their CMV antibody status. If results are negative, they are susceptible to catching CMV for the first time and it is a potential risk to the fetus if they are pregnant. On the other hand, if results of a CMV antibody titer (IgG) is positive, they have already acquired CMV at some time in their life and their risk is greatly reduced. Additionally, it is important for all care givers to practice good hygienic measures. This is achieved by hand washing with soap and water, especially after diaper changes and any contact with a child's bodily fluids. Kissing and sharing food or drink also should be avoided.”
"There are pregnant teachers and other care givers at our school who work closely with children known to have CMV infection. For their safety, should these employees be relieved from their duties in caring for these children?"
According to the National Congenital CMV Disease Registry: “Changing the duties of a teacher or care giver from children known to have CMV infection to other children may not reduce their risk of acquiring CMV. It is a common virus in all children. In fact, studies reveal that between 30 and 80% of children between the ages of 1-3 years of age who attend some form of group care are excreting CMV. In this setting transmission of CMV is usually transmitted from child-to-child by direct contact with bodily fluids such as saliva or urine. It also may be transmitted to care givers. Therefore it is wise for care givers in this type of setting to be aware of CMV and consider knowing their CMV antibody status. If results are negative, they are susceptible to catching CMV for the first time and it is a potential risk to the fetus if they are pregnant. On the other hand, if results of a CMV antibody titer (IgG) is positive, they have already acquired CMV at some time in their life and their risk is greatly reduced. Additionally, it is important for all care givers to practice good hygienic measures. This is achieved by hand washing with soap and water, especially after diaper changes and any contact with a child's bodily fluids. Kissing and sharing food or drink also should be avoided.”
ADDITIONAL NOTES FROM LISA SAUNDERS:
I am still trying to get Connecticut's day care licensing webpage to include CMV prevention under its Disease and Prevention Section (http://www.ct.gov/oec/cwp/view.asp?a=4542&q=545170). I am also asking the national Occupational Safety and Health Administration (OSHA) office to provide a CMV prevention message for day care workers, the way they do for outdoor workers in regard to Zika (they sent out a newsletter stating: "QuickCards offer guidance on protecting outdoor workers from Zika virus").
Although the United States Senate passed legislation designating the month of June as "National Congenital CMV Awareness Month," while recommending that “more effort be taken to counsel women of childbearing age of the effect this virus can have on their children,” less than half (44%) of OB/GYNs warn patients about CMV as surveyed by the American College of Obstetricians and Gynecologists (ACOG) in 2007. Now, according to page 1514 of the ACOG Practice Bulletin (June 2015), [151 Cytomegalovirus, Parvovirus B19, Varicella Zoster, and Toxoplasmosis in Pregnancy (June 2015) (Replaces Practice Bulletin Number 20, September 2000)]:
tory secretions), as well as avoidance of sharing utensils
"Some have suggested that pregnant women should
be instructed on the importance of personal hygiene and
safe-handling techniques (eg, the use of latex or nonla-
tex gloves and rigorous hand washing after exposure totory secretions), as well as avoidance of sharing utensils
potentially infected articles, such as diapers, or respire-
with or kissing young children if saliva is present. Such
guidelines may be difficult to implement because they
often are considered impractical or burdensome. At
present, such patient instruction remains unproven as a
method to reduce the risk of congenital CMV infection."
But, according to the article, “Washing our hands of the congenital cytomegalovirus disease epidemic,” "...more than 100 years of evidence conclusively demonstrates that hand washing reduces risk of infection for a wide range of pathogens...It is important to recognize the implications of the consensus that hygienic practices are efficacious for preventing CMV transmission. Individual women have the right to know that, under ideal conditions, risk of child-to-mother CMV transmission can be reduced by proper hygienic practices. See article, "Washing our hands of the congenital cytomegalovirus disease epidemic," at: http://bmcpublichealth.biomedcentral.com/…/1…/1471-2458-5-70
Perhaps these following daycare organizations will post CMV prevention information:
Perhaps these following daycare organizations will post CMV prevention information:
Perhaps some of these will?
|
More about the author of this blog post:
For more information from doctors, contact:
Gail J Demmler-Harrison, MD, Professor, Pediatrics, Section Infectious Diseases, Baylor College of Medicine, Attending Physician, Infectious Diseases Service, Texas Children's Hospital, CMV Registry, CMV Research and CMV Clinic. Contact: 832-824-4330,gjdemmle@texaschildrens.org. The CMV Registry supports CMV research, disseminates information and provides parent support. Visit: https://www.bcm.edu/departments/pediatrics/sections-divisions-centers/cmvregistry
Stuart P. Adler M.D.
http://www.cmvregistry.org
http://www.cmvregistry.org
Dr. Stuart Adler and Registry Personnel
514 Diane Lane, Richmond, VA 23227, Phone: (804) 264-8296
Email: spadler123@gmail.com
Cytomegalovirus Registry Background
514 Diane Lane, Richmond, VA 23227, Phone: (804) 264-8296
Email: spadler123@gmail.com
Cytomegalovirus Registry Background
Data Collection Methods
Data analysis and sharing
Data analysis and sharing
Dr. Brenda K. Balch, MD, Connecticut's American Academy of Pediatrics Early Hearing Detection & Intervention Chapter
Champion. She has a strong interest because congenital CMV is a major cause of
hearing loss. bkbalch@sbcglobal.net, (Sent Testimony to CT’s HB
5525).
Subscribe to:
Posts (Atom)
