Monday, June 5, 2017

The Abigail Phelps Chapter presents: Congenital Cytomegalovirus

My Story with CMV by Lisa Saunders, former licensed daycare provider

“CMV and Licensed Daycare Providers”

CMV is often found in child care centers. I was unaware that cytomegalovirus (CMV) was an occupational risk for daycare educators when I became a licensed home daycare provider in Maryland in 1987. I didn’t know that CMV could devastate my pregnancy with Elizabeth, who was born severely disabled by congenital CMV in 1989. 

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, 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..." Nowhere in my daycare licensing 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 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,” congenital CMV still remains largely unknown.

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 given that every year, 8 - 20% of caregivers/teachers contract cytomegalovirus (CMV). The American Academy of Pediatrics recommends counseling caregivers of their increased exposure to CMV, importance of hand-washing, and avoiding contact with urine, saliva, and nasal secretions. Mothers of children in daycare are also at increased risk for CMV (Pass et al., 1986).

I continue to warn daycare providers wherever I can. Please share my article published by ChildCare Aware of America:  The Danger of Spreading CMV: How We Can Protect Our Children.


ChildCare Aware of America publishes: "The Danger of Spreading CMV: How We Can Protect Our Children."

The book, "Caring for Our Children," co-authored by the American Academy of Pediatrics (AAP) makes it clear child care workers should be educated about CMV, their increased risk for it, and need for meticulous hygiene, but so few caregivers/teachers are told about CMV. I am trying to change that by speaking, blogging, and e-mailing daycare directors and licensing agencies, but it's hard to make any changes to policy. 
I am a former licensed daycare provider who never heard about CMV and my increased risk for it until after my daughter Elizabeth was born severely disabled by congenital CMV. 
ChildCare Aware of America just published my blog post, The Danger of Spreading CMV: How We Can Protect Our Children, where I use "Caring for Our Children," as a source. The post is geared to child care providers, babysitters and church nursery volunteers.  You can access and share it through this link:
If you prefer Facebook, ChildCare Aware of America posted the article link on their Facebook page at:

Do you have any advice on how I can reach child care providers with CMV information? Since so few daycare center directors have even heard of CMV, it is very difficult. Utah passed a law requiring child care providers be informed, but very few states have such a law. I helped get a CMV testing law passed in Connecticut, but the prevention education part didn't pass because of funds (prevention education was estimated to cost Connecticut $40,000 per year). 

Many child care agencies feel they are doing their job because they are teaching hand-washing protocol, but it's important child care workers understand their CMV risk to increase their motivation for following the protocol. 

I just sent out the following newsletter in honor of June as National Congenital CMV Awareness month It includes materials of interest  to those who work in the child care industry including my list, “15 Reasons Why Childcare Providers Need to Know About CMV.” For the newsletter, click on:

You may be interested in my TV interview: Child Care and Cytomegalovirus (CMV): Protect Your Pregnancy

If you live or work in my home state of Connecticut, here is a CMV prevention flyer with the Department of Public Health logo: