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| (Miss Cup illustrated by Marianne Greiner; courtesy of Lisa Saunders, author of Once Upon a Placemat) |
Did
you know toddlers can be shedding
cytomegalovirus (CMV), the leading viral cause of birth defects?
Congenital (meaning present at birth) causes mental retardation, liver disease,
cerebral palsy and deafness—more
disabilities than Down syndrome—as
a result of infection in pregnant women. Data
from a variety of day care center studies indicate that between 44 to 100% of
two year olds at a single given time were shedding CMV.
When I was pregnant, I was
never warned about congenital (meaning present at birth) CMV and how to prevent
it until it was too late for my daughter, Elizabeth, born severely disabled by
congenital CMV. If you have never heard of congenital CMV, you are not alone. Only 7% of men and 13%
of women surveyed had heard of congenital CMV.
I am Lisa Saunders, the parent representative of the Congenital Cytomegalovirus Foundation (http://www.congenitalcmv.org) and I will continue to write and speak about congenital CMV until it is a standard practice of care to educate women of childbearing age how to prevent it, or, until an effective vaccine is made available..
How
prevalent is congenital CMV?
According to the Centers for Disease Control and
Prevention (CDC), in the U.S.:
·
Every hour, congenital CMV (or cCMV) causes one child to become disabled.
·
Approximately 1 in 150 children is born with cCMV infection (30,000 each year).
·
About 1 in 750 children
is born with or develops permanent problems due to congenital CMV infection.
More than 5,000 children each year suffer permanent problems caused by cCMV.
How can you protect your
unborn baby from congenital CMV?
The
risk of getting CMV through casual contact is small--it is generally passed to
others through direct contact with body fluids, such as urine and saliva. CMV
is often being shed by apparently healthy toddlers. Therefore:
·
Avoid putting your child’s food, utensils, drinking cups, and pacifiers in your
mouth.
·
Kiss your children on the forehead or cheek instead of the lips.
·
Wash your hands after changing diapers, wiping runny noses, picking up toys.
(More: cdc.gov/features/prenatalinfections)
Will it make a difference
if women are educated on CMV prevention?
Yes,
according to studies in the U.S. and France.
Dr. Demmler-Harrison, Director, Congenital CMV Disease Research, Clinic & Registry, states:
“Studies have shown that women who know they are CMV seronegative, know they
are pregnant, and know about their toddler's CMV shedding are the most likely
to prevent CMV transmission and reduce their risk from over 50 percent during
pregnancy to a risk of less than 5 percent during pregnancy. 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.”
If
more people knew about human CMV (HCMV), not only would children be spared the
suffering my daughter endured for 16 years until her death during a
seizure in 2006, but one reason for the delay in successful development of
a vaccine is “there
has been insufficient education about the problem of HCMV infection…”
Why don’t doctors routinely
warn women of childbearing age about congenital CMV?
Doctors
don’t realize how prevalent it is. Fewer
than half (44%) of OB/GYNs surveyed reported counseling their patients about
preventing CMV infection. “The virtual absence of a prevention message has
been due, in part, to the low profile of congenital CMV. Infection is usually
asymptomatic in both mother and infant, and when symptoms do occur, they are
non-specific, so most CMV infections go undiagnosed,” according to the article,
“Washing our hands of the
congenital cytomegalovirus disease epidemic.”
What you can do to stop
congenital CMV
1. Visit the CDC’s website about congenital
CMV at http://www.cdc.gov/cmv/index.html
and share it with others.
2. Share this article with your friends,
family and on your social media. Children will enjoy coloring the free downloadable
placemats linked below, which include germ prevention tips on the back.
What I am doing to try to
stop congenital CMV
I
was recently instrumental in getting a law passed in Connecticut requiring
testing infants for congenital CMV if they fail the required hearing
screen. If a baby tests positive for congenital CMV, doctors can choose to
offer the antiviral shown to improve outcomes (brain size, hearing, etc.). The prevention education part of the
Connecticut bill did not pass because it was estimated to cost the state
$40,000 a year to educate the public about CMV. (See endnote for what
it costs the U.S. not to educate the
public about congenital CMV, and using Connecticut as an example, how you can
calculate the cost to your state).
Until
health care professionals take over the work of educating the public about CMV
prevention, I will continue to speak to groups and write books and articles
about this #1 birth defects virus. I am the author of the memoir, Anything
But a Dog! The perfect pet for a girl with CMV (cytomegalovirus), and
recently published the short, lighthearted family fairytale, “Once Upon a Placemat: A Table Setting Tale,” which comes
with a free downloadable program kit:
1. A short video introducing the tableware
characters and why they want a bath before being shared: https://youtu.be/_0jDOKPFg4M
2. Placemats with the tableware characters
and germ prevention tips: https://drive.google.com/file/d/0B9Klfxar2CmjZUNDdHFwQkVmbWs/view?usp=sharing
(there are versions of the placemat that provide organizations open space to
insert their own logo/information before distributing).
Please
share this information to help prevent the suffering caused by congenital CMV.
Sincerely,
Lisa Saunders
PO Box 389, Mystic, Connecticut, 06355
http://authorlisasaunders.blogspot.com/
https://www.youtube.com/user/anythingbutadog
https://twitter.com/saundersbooks
https://www.linkedin.com/in/lisasaundersbooks
Lisa Saunders is an award-winning writer and TV talk show host. A graduate of Cornell University, she is the author of seven books, is a part-time historical interpreter at Mystic Seaport and instructor at New London Adult and Continuing Education. She lives in Mystic, Connecticut, with her husband, Jim, and hound, Doolittle, where she created a little history of her own by helping Connecticut become the second state in the country to enact a law combating the #1 viral cause of birth defects, congenital cytomegalovirus (CMV), a disease that led to the disabilities and death of her younger daughter, Elizabeth. Contact Lisa directly for author visits at LisaSaunders42@gmail.com.
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| Lisa Saunders is pictured with Connecticut Governor Dan Malloy holding a photograph of her daughter Elizabeth (1989-2006), born disabled by congenital CMV, at the ceremonial bill signing for “Public Act 15-10: An Act Concerning Cytomegalovirus” at the Office of the Governor in Hartford on July 28, 2015. |
Endnote:
What is the annual
cost of caring for children disabled by congenital human cytomegalovirus
(HCMV) in the U.S. and by state?
“In
the early 1990s, the expense to the US health care system associated with
congenital HCMV infection was estimated
at approximately $1.9 billion annually, with a average cost per child of over
$300,000” (Arvin
et al. 2004). In 2013, 3,932,181 babies
were born in U.S. with 1/750, or
.0013, disabled by cCMV = 5,112 babies.
Connecticut’s
annual cost of caring for children disabled by cCMV can therefore be calculated
as: 36,085 births X .0013 cCMV disabled = 47 babies
X $300,000/year = $14,100,000 or over $14 million annually.
