In December 1989, author Lisa Saunders, a licensed home daycare provider, holds her baby Elizabeth, born
severely disabled by congenital CMV, for the first time. Elizabeth’s big
sister, Jackie, looks on.
Daycare and CMV: Know the risks! Protect Your Pregnancy!
by Lisa Saunders
1.
INTRODUCTION
I Was a Licensed Daycare Provider
Unaware of Increased Risk for #1 Birth Defects Virus
I
was unaware that cytomegalovirus (CMV) was an
occupational risk for daycare educators[i] when I became a licensed home daycare
provider in Maryland in 1987. I didn’t know that CMV was the leading viral
cause of birth defects and could devastate my own pregnancy with Elizabeth, who
was born severely disabled by congenital (present at birth) CMV in 1989. Today,
most U.S. daycare providers are still not aware of their increased risk for
contracting CMV. According to the New
York Times, CMV Is a Greater Threat to Infants Than Zika, but
Far Less Often Discussed (2016).
At
the time of Elizabeth’s birth, I was operating my licensed home daycare center and
volunteering in our church nursery, additionally putting my pregnancy at risk. Elizabeth
was born with an abnormally small head, known as microcephaly, was profoundly
mentally impaired, legally blind, and had cerebral palsy. After her birth, I
was given information from the Centers and Disease Control Prevention (CDC)
informing me that "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..."[ii] This
information came too late to spare my daughter the years of suffering that lay
ahead of her. Nowhere in my daycare licensing literature or training was CMV
mentioned. CMV prevention measures were not discussed in my prenatal doctor
visits.
Though
Elizabeth grew into a very cheerful girl who won the "Best Smiling
Award" at school, she couldn't hold up her head and lived as a
three-month-old for 16 years, requiring several surgeries such as spinal
fusion. She developed epilepsy and was gradually losing her hearing by the time
she died at 16 during a seizure[iii] in 2006 while we were living in New York. I had a
bad dream shortly after Elizabeth’s death about new parents wondering why I
hadn’t done more to warn them about the precautions to take against CMV.
Although I wrote about Elizabeth’s adventurous life with her tomboy sister and a
series of dysfunctional pets, including a homeless older dog that joined her on
the couch in my memoir, “Anything But a Dog: the perfect pet
for a girl with congenital CMV”
(Unlimited Publishing, 2008, Thousand Books Project Team of Tokyo, Japan, 2017), congenital CMV still remains largely unknown.
Recent
HealthStylesTM surveys in the U.S. concluded that only 5% of
men and 9% of women have heard of CMV (2015 and 2016).[iv]
In
2010, my husband and I moved to Connecticut. In 2012, I received an email
from a distressed grandmother about her grandson born with congenital
CMV in a Connecticut hospital (I am the parent representative of the Congenital
Cytomegalovirus Foundation). The mother of
her grandson was a high school student interning in a Connecticut daycare
center. The young mother, just like me over 20 years earlier, was unaware she
was putting her pregnancy at greater risk by working in daycare with young
children. When I visited the family in the hospital, the attending nurse
asked me, "Knowing what you do about CMV, why haven’t you launched an
awareness campaign?"
I
explained to the nurse that CMV parents, scientists and doctors have been
trying for years to raise awareness, but the real risk of CMV to pregnancies
remains little discussed—a real tragedy for daycare workers in light of
recommendations made by the American Academy of Pediatrics (AAP): "In
view of the risk of CMV infection in child care staff and the potential
consequences of gestational CMV infection, child care staff members should be
counseled about risks. This counseling may include testing for serum antibody
to CMV to determine the child care provider’s protection against primary CMV
infection..."[v]
(pg 145, AAP Red Book, 2012;
pgs 144-145, AAP Red Book, 2015).
According to the study
published in 2016, “Child Care
Provider Awareness and Prevention of Cytomegalovirus and Other Infectious
Diseases”
by Rosemary Thackeray and Brianna M. Magnusson, “Women who are exposed to CMV prior to
conception or within the first trimester of pregnancy and seroconvert have
increased risk of their infant being infected with CMV.” Despite a daycare worker’s high risk of
contracting CMV, only 18.5% of licensed “in-home” daycare providers have heard
of it. The
authors also state: “Providers do not know how to appropriately sanitize
surfaces to reduce spread of disease.” For example, many providers use baby
wipes to clean a surface, but baby wipes alone do not sanitize it. “Awareness
of CMV and how to prevent transmission of infectious disease is low.
Intervening with child care providers and parents through child care facilities
are key opportunities to reduce prevalence of CMV infection and other diseases.”
In 2005, when Jessica Rachels of Sandpoint, Idaho,
was pregnant with her second child, the doctors handling her prenatal care
asked about her profession. Although she told them she was an in-home childcare
provider and worked once a week in a day care center, she was not made aware of
CMV or her increased risk for contracting it. She says, “I believe I caught this virus due to my childcare
profession as I was not one to share my drinks or food with my preschooler, and
I always kissed him on the forehead or cheek, rather than on his mouth. As a
childcare worker, I washed my hands numerous times throughout the day—I even remember
my hands cracking from washing them so much. I washed after every diaper change
and before handling food, but I remember being pregnant at the daycare center
and eating snacks and lunch on the playground without washing my hands first.
Even though I doubled up on the tissues when I wiped the children's
noses--thinking that doubling up on tissues was enough protection since there
was no sink nearby—I was wrong.”
Jessica’s daughter,
Natalie (or Natalie bug as she is affectionately called), was born disabled by
congenital CMV in 2006. Jessica says, “As a result of her cerebral palsy,
Natalie is sentenced to live in a body that hurts every day. She has endured 10
surgeries and several implanted devices to give her a better quality of
life. Despite Natalie’s troubles, she is a beautiful 11-year-old girl who
likes to be a part of the family. Even with her visual impairments, her
favorite game is peek-a-boo.” Jessica, like other parents
of children born disabled my congenital CMV, tries to educate the public about CMV
prevention to stop these disabilities from happening to other children. She
says, “Knowledge is powerful, and together, we can make the
world a better place for our future children—a world with less pain and more
fun.”
Daycare
facts:
·
“Each day in the United States, 61 % of children
under the age of 5 are cared for in a child care facility” (Thackeray and Magnusson, 2016)
- Over
1 million (1,260,600) childcare workers according to the Department of Labor (2014)
·
Between
“7.9–10% of daycare workers contract CMV infections each year.” (“Losing Ground:
Awareness of Congenital Cytomegalovirus in the United States, Doutre et al, 2016) [vi]
·
“9%-20% of CMV-seronegative women who work in day
care centers with young children will acquire CMV infection,” according to Dr. Gail Demmler-Harrison, Director, Congenital CMV Disease
Research, Clinic & Registry in Cytomegalovirus: The Virus All Pregnant
Women Should Know About Now, (2016)[vii]
·
“CMV-seronegative
women have a 5- to 25-fold increased risk of developing CMV if exposed to
children in day care…” state OB/GYNs Carlson, Norwitz and Stiller in their
article, Cytomegalovirus Infection in Pregnancy: Should All Women Be Screened? (2010). [viii]
·
Mothers
of children in daycare are also at increased risk for contracting CMV according to the study, "Increased Rate of
Cytomegalovirus Infection among Parents of Children Attending Day-Care Centers.” (Pass, et al, 1986)[ix]
According
to Dr. Stuart P. Adler in his article, “Prevention of Maternal–Fetal
Transmission of Cytomegalovirus.”[x]Between
20-60% of women are “susceptible (seronegative) to CMV at conception. Maternal
immunity from a pre-conception infection protects against a second CMV
infection and protects the fetuses from severe postnatal neurosensory deafness
and neurologic damage. Thus a primary maternal infection with CMV in early
pregnancy cause the majority of congenital disease…In the US, 60% of the
mothers of children in daycare are CMV seronegative, and at least 25% of all
children attending large group child care centers are shedding CVM.”
If I
had learned that I didn’t have CMV antibodies (seronegative) when planning to
become pregnant, I would not have cared professionally
for toddlers in my home because it’s
difficult to wash your hands every time you pick up toys, wipe noses, and change
diapers in addition to chasing after them. I also would have been far more
careful when handling the saliva of my own toddler and would never have shared
food or drinks with her. I would have declined volunteering in our church’s
nursery once Sunday a month.
U.S.
childcare workers are not the only ones unaware of their occupational risk for
CMV. Childcare workers in Great Britain are also unaware. Paul Griffiths,
Professor of Virology at the Royal Free Hospital and University College London,
shares a daycare provider’s case in his 2012 book, “The Stealth Virus.” His
first chapter features an in-home daycare provider with no children of her own.
After giving birth to a stillborn son, she learned she had contracted CMV from
one of the toddlers in her care. “Every time she picked up a child she wondered
if this was the one who had killed her baby.”[xi]
My
publication research has led me to believe there are five mains reasons for the
lack of CMV awareness in the U.S.:
1.
No national law to ensure compliance with the
American Academy of Pediatrics recommendation to educate childcare workers
about CMV risks. (The U.S. Senate recommends[xii] more CMV
counseling, but it’s not a law.)
2.
CMV prevention education is not part of a doctor's
"standard of care." In 2015, the American Congress of Obstetricians
and Gynecologists “decided not to encourage doctors to counsel women on how to
avoid CMV, citing a lack of high-quality data.”[xiii]
3.
No national CMV awareness campaign[xiv] targeted to
women and men of childbearing age (the virus is also sexually transmitted so
men need to be aware of precautions to take when handling toddler saliva/urine).
4.
No standardized national daycare licensing protocol as
is the case in Germany and Queensland, Australia. (Queensland relocates workers who are
pregnant, or “expect to become pregnant, to care for children aged over two to
reduce contact with urine and saliva.”[xv] In Germany, “to protect DCWs [day care workers] from primary infection, their CMV
serostatus must be checked at the beginning of their pregnancy. When the DCW is
seronegative, she is excluded from professional activities with children under
the age of three years in order to prevent feto- or embryopathy in her
offspring."[xvi]
- Most CMV infections go undiagnosed—“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.” (Article, “Washing our hands of the congenital
cytomegalovirus disease epidemic,”[xvii]
by Cannon MJ, Davis KF, published in BMC Public Health
2005, 5:70).
In Australia, “In a landmark decision in NSW [New
South Wales], a childcare worker and her severely disabled son
were awarded $4.65 million. A Court of Appeal ruled that
the child's disabilities resulted from the woman being infected with
cytomegalovirus (CMV) at work (Hughes v SDN Children's Services 2002).” [xviii] (See: https://www.worksafe.qld.gov.au/injury-prevention-safety/workplace-hazards/hazardous-exposures/biological-hazards/cytomegalovirus-cmv-in-early-childhood-education-and-care-services)
I.
DAYCARE
WORKERS, CMV, AND RECOMMENDATIONS BY THE AMERICAN ACADEMY OF PEDIATRICS
Statements from scientific research on childcare
workers and CMV include:
In
the 1986 study, “Group day care and cytomegaloviral
infections of mothers and children,” the authors stated: “CMV excretion…peak
rates of viral shedding, ranging from 44%
to 100%, were noted for two-year-olds.”[xix]
(See: https://www.ncbi.nlm.nih.gov/pubmed/3018892)
In
the 1989 study,
“Cytomegalovirus and Child Day Care,” Dr. Stuart Adler states: “To determine whether day-care workers acquire
cytomegalovirus infection from the children they care for, we studied 610 women
employed at 34 day-care centers over two years…We conclude that workers in
day-care centers may acquire cytomegalovirus infection from the children in
their care and that this risk is significantly greater among those who care for
children less than two years of age.”[xx]
(See: http://www.nejm.org/doi/full/10.1056/NEJM198911093211903)
In
the 2006 article, “Cytomegalovirus as an occupational risk in daycare
educators
it was noted: “These studies suggest that daycare centres may
be a high-risk setting for CMV infection…studies in industrialized countries
have confirmed that children attending daycare have higher excretion rates of
CMV than children not attending day-care…[several daycare studies are cited in
this article]. (See: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2528629/)
Although the American Academy of Pediatrics
recommends “child care staff members should be counseled about risks. This counseling
may include testing for serum antibody to CMV to determine the child care
provider’s protection against primary CMV infection...," most daycare
workers do not receive this counseling, CMV risks are not mentioned in the daycare
licensing literature of most states, and CMV prevention education is not part
of any doctor’s “standard practice of care.”
It is important that all medical professionals become knowledgeable about CMV: “Because
nurse practitioners, physician assistants, and other primary-care providers
are generally the first line for medical care, it is imperative that these
clinicians be knowledgeable about cCMV [congenital CMV] in order to educate
patients, particularly those who are pregnant or who are planning to have
children.”[xxi]
(Piña, Clinical Advisor, 2014)
II.
AMERICAN
COLLEGE OF OBSTETRICIANS AND GYNECOLOGISTS (ACOG), LACK OF AWARENESS CAMPAIGNS,
AND DAYCARE LICENSING
Congenital CMV remains little-known for several
reasons:
— Still no national
public awareness campaign: “Despite being the
leading cause of mental retardation and disability in children, there are
currently no national public awareness campaigns to educate expecting mothers
about congenital CMV,” states Clinical Advisor article, “Educate pregnant women to prevent congenital CMV.”[xxii]
(2014)
— No central U.S. daycare
licensing division to enforce licensing education and methods of
CMV control: According to the Department of Labor, "Education and training requirements vary by setting, state, and
employer."[xxiii]
— CMV prevention
education is not part of a doctor’s “standard practice of care”: In fact, less than half (44%) of OB/GYNs warn patients about
CMV according to a survey done by the American College
of Obstetricians and Gynecologists in 2007[xxiv]. The
following reasons have been cited for this lack of prevention education:
1.
Don’t want to frighten their patients: An OB/GYN was quoted in FitPregnancy magazine (June/July '08): "’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,’ explains OB-GYN Laura Riley, M.D., director of
infectious disease at Massachusetts General Hospital in Boston. ‘That's just
the reality.’".”[xxv]
2. Most CMV infections go
undiagnosed—“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.” (Article, “Washing our
hands of the congenital cytomegalovirus disease epidemic,”[xxvi] by
Cannon MJ, Davis KF, published in BMC Public Health 2005, 5:70).
3.
Feel prevention measures are “impractical or
burdensome." According to the New York Times, “Guidelines from ACOG suggest that pregnant women
will find CMV prevention ‘impractical and burdensome,’ especially if they are told not to kiss their
toddlers on the mouth — a possible route of transmission.”[xxvii]
4. Concerns
about effectiveness of CMV prevention instructions. “…because
of concerns about effectiveness (i.e., Will women consistently follow hygienic
practices as the result of interventions?), the medical and public health
communities appear reluctant to embrace primary CMV prevention via improved
hygienic practices, and educational interventions are rare,” state Drs. Cannon
and Davis in “Washing our hands of the congenital cytomegalovirus
disease epidemic.”
III.
WHAT IS CMV VERSUS CONGENITAL
CMV?
According
to the CDC, CMV “is a common
virus
that infects people of all ages. Over half of adults by age 40 have been
infected with CMV…Most people infected with CMV show no signs or symptoms.
However, CMV infection can cause serious health problems for…babies infected
with the virus before they are born (congenital
CMV).”
- Congenital CMV infection is the “leading infectious cause of neurologic disabilities
and sensorineural hearing loss in children.”
It
causes intellectual disability and cerebral
palsy--more disabilities than Down
syndrome--as a result of infection in pregnant women. According to the
CDC, in the U.S.:
·
Approximately
1 in 150 children is born with congenital CMV infection (30,000 each year).
·
“About one in five
babies with congenital
CMV infection will be sick from the virus or will have long-term health
problems” (or 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.
The CDC states: “…some babies may have health problems that are
apparent at birth or may develop later during infancy or
childhood. Although not fully understood, it is possible for CMV to cause the
death of a baby during pregnancy (pregnancy loss).
Some babies may have signs of congenital CMV
infection at birth. These signs include
- Premature birth,
- Liver, lung and spleen problems,
- Small size at birth,
- Small head size, and
- Seizures.
Some babies with signs of congenital CMV infection
at birth may have long-term health problems, such as
- Hearing loss,
- Vision loss,
- Intellectual disability,
- Small head size,
- Lack of coordination,
- Weakness or problems using muscles, and
- Seizures.
Some babies without signs of congenital CMV
infection at birth may have hearing loss. Hearing loss may be present at birth
or may develop later in babies who passed their newborn hearing test.[xxviii]
(Print the CDC’s congenital Cytomegalovirus (CMV) Pamphlet, English or Spanish, found at the National Birth Defects Prevention Network).
Babies born prematurely is a problem associated with
congenital CMV: “Prematurity [median gestational age, 34 weeks] occurs in as
many as 34% of infants with symptomatic congenital CMV infection,” according to
article “Congenital cytomegalovirus infection in preterm and
full-term newborn infants from a population with a high seroprevalence rate.”[xxix]
Children born with congenital CMV are also at
increased risk for cancer: “Newborn babies born with cytomegalovirus (CMV)
infection have an increased risk for developing acute lymphoblastic leukemia
(ALL) later in life—a risk almost four times higher than babies born without
CMV, according to a recent bone marrow study” (article, “Virus Tied to Leukemia Risk, 2017: https://www.healthcentral.com/article/virus-tied-to-leukemia-risk).
[ix] (Robert F. Pass, M.D., Cecelia Hutto, M.D., Rebecca
Ricks, M.S.N., R.N., and Gretchen A. Cloud, M.S., 1986)
[xii] (S.Res.215 - A resolution designating the month of
June 2011 as "National Cytomegalovirus Awareness Month": 112th
Congress (2011-2012), 2011)
[xxiv] (Knowledge and Practices of Obstetricians and
Gynecologists Regarding Cytomegalovirus Infection During Pregnancy --- United
States, 2007, n.d.)
Author's note: I have a lot more research I can share with you. If interested, contact me at LisaSaunders42@gmail.com. The following photograph is me with Connecticut Governor Dan Malloy at the 2015 CMV bill signing requiring testing newborns for CMV if they fail their newborn hearing screen.
|
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