"Had I Known" Chapter from Help Childcare Providers Fight CMV

Help Childcare Providers Fight CMV

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EXCERPT

Chapter one: 

Had I Known 

Childcare providers unaware of occupational risk for CMV

Most pregnant women know to avoid dirty kitty litter and mosquito bites to protect their unborn babies from disabilities caused by infections.  Very few, however, know how to prevent the leading viral cause of birth defects, congenital CMV. Congenital (meaning present at birth) CMV is a more common cause of disabilities than Zika and fetal alcohol syndrome.

Approximately 1% of the babies born in the U.S. are infected prenatally with CMV according to the American Academy of Pediatrics (AAP). Ten percent of those infants—about 4,000 babies each year—are born with one or multiple abnormalities. Disabilities from congenital CMV can include hearing and vision loss, intellectual challenges, cerebral palsy, and seizures.

CMV is often found in the bodily fluids of otherwise healthy toddlers. Toddlers can spread the disease to other toddlers by mouthing each other’s toys, and to their adult caregivers who may be unaware of how to properly handle bodily fluids such as saliva, urine, blood and nasal secretions.

Unfortunately, most women of childbearing age don’t know about CMV and that they should avoid kissing toddlers around the mouth as well as sharing food, cups and utensils with them. I was one of those women. 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 was unaware that every year, 8 - 20% of caregivers/teachers contract CMV, which is understandable given that approximately 44 - 100% of two-year-olds in group daycare are excreting CMV (Pass et al., 1986).

My daughter Elizabeth was born severely disabled by congenital CMV in 1989. While I was pregnant with Elizabeth, I not only operated a licensed home childcare center, but I also volunteered in our church nursery with young children and was the mother of a toddler—all things that put me at higher risk for contracting CMV.

 Elizabeth was due to be born on Christmas Eve, making my pregnancy with her an especially happy experience. But when she arrived on December 18^th, I felt a stab of fear. My immediate thought was, “Her head looks so small—so deformed.” After a CAT scan, the neonatologist said, "Your daughter has microcephaly—her brain is very small with calcium deposits throughout. If she lives, she will never roll over, sit up, or feed herself." Further tests revealed Elizabeth's birth defects were caused by congenital CMV.

I was then given information that sent my head spinning—literally. I could barely see straight reading material from the Centers for Disease Control and Prevention (CDC) which stated, "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..." I was stunned. How could it be that no one in the medical or childcare field thought to warn me of this? Nowhere in my childcare licensing training or church nursery training was CMV mentioned. CMV prevention was not discussed in my prenatal doctor visits. 

I felt sick at what my lack of knowledge had done to my little girl. In milder cases, children with congenital CMV may lose hearing or struggle with learning disabilities. But Elizabeth's case was not a mild one. When my husband Jim heard Elizabeth's grim prognosis, he stared at her and said, “She needs me”—just like Charlie Brown with that pathetic Christmas tree.

It took me about a year, but I eventually stopped praying a nuclear bomb would drop on my house so I could escape my overwhelming grief over Elizabeth's condition. Life did become good again—but it took a lot of help from family, friends, some Valium, and the Book of Psalms. Although Elizabeth was profoundly mentally impaired, legally blind, had cerebral palsy, epilepsy, and a progressive hearing loss, we were eventually able to move forward as a happy, "normal" family. 

Years later, I awoke feeling so proud of Elizabeth. It was her 16th birthday and just one week before her 17th Christmas. When the song “I’ll be home for Christmas” played on the radio, I cried thinking how hard Elizabeth fought to be home with us, overcoming several battles with pneumonia, major surgeries, and seizures. Weighing only 50 pounds, she looked funny to strangers because of her small head and adult teeth, but she was lovely to us with her long brown hair, large blue eyes and a soul-capturing smile. She even won the "Best Smiling Award" at school. Although still in diapers and unable to speak or hold up her head, Elizabeth loved sitting on the couch with her fat, old dog and going for long car rides. She especially enjoyed school and being surrounded by people, paying no mind to the stares of “normal” children who thought she belonged on the "Island of Misfit Toys."

In 2006, 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 always feared. “Mrs. Saunders, Elizabeth had a seizure and she’s not breathing." The medical team did all they could, but she was gone. While holding Elizabeth’s body on his lap, my husband looked down into her partially open, lifeless eyes and cried, “No one is ever going to look at me again the way she did.”

Shortly after Elizabeth died, I had a nightmare: visiting a support group of new parents of children with congenital CMV, they suddenly looked at me and asked, “Why didn’t you do more to warn us about CMV?” When I awoke in a cold sweat, I knew I had to make CMV awareness my life’s work.

First, I completed a book about Elizabeth’s life with her tomboy sister and her faithful couch companion, a formerly homeless, fat dog Riley, and called it, Anything But a Dog: the perfect pet for a girl with congenital CMV. Despite my work and the work of others, however, CMV remains largely unknown.

In 2012, because of my online presence as a writer and speaker about CMV, I received an email from a grandmother distraught about her grandson born with congenital CMV. The baby’s mother was a high school student interning in a Connecticut childcare center. The young mother, just like me many years earlier, was unaware she was putting her pregnancy at greater risk by caring for toddlers.

When I visited the new mother and baby in the hospital, the attending nurse asked me, "Knowing what you do about CMV, why don’t you launch an awareness campaign?"

I explained to the nurse that CMV parents, scientists and doctors have been trying for years to raise awareness but can’t sustain meaningful, long-term change without government help.

In 2015, by modeling efforts in Utah, I finally made a little headway by helping Connecticut become the second state to pass a law requiring newborns who fail their hearing exam to be tested for CMV, which is helpful in regard to early intervention for those who test positive. But a CMV awareness campaign is also needed—especially since studies have shown that the effectiveness of hygienic precautions is greater than 75% (Adler, 2015).

I am not alone in my life mission to ensure all women, especially those who care for toddlers, learn about CMV. 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.

Jessica said, “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. However, while caring for children there, I do remember being pregnant 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 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 girl who likes to be a part of the family. Even with her visual impairments, her favorite game is peek-a-boo.”

Caring for young children, especially one who is medically involved, has made CMV advocacy work difficult for Jessica, but she still found a way. “My husband and I educated our friends, family, doctors and church on the virus so what happened to us wouldn't happen to them.”

Jessica also reached out to Idaho’s Department of Health and Welfare to educate them on CMV. “To my delight, both the Department of Health and Welfare and IdahoSTARS, a program that provides childcare training, were interested in raising CMV awareness.”

Jessica and her husband did even more. In September 2016, they attended the Congenital CMV Public Health & Policy Conference in Austin, Texas. Jessica said, “This really lit a fire under us so we joined forces with other CMV advocates in our state. We thought if we could save one child from congenital CMV, then it was well worth the work. At the time, Idaho was not educating their childcare providers. Within a few months, we officially formed the “Idaho CMV Advocacy Project" (IdahoCMV.com).

Jessica said getting a law passed was one of the busiest times of her life. Driving to Boise, Idaho’s capitol, to meet with legislators was a nine-hour trip each way from their home—a trip they made several times with their daughter. In addition, Jessica said, “My colleagues and I put in long hours making flyers, creating brochures, fighting with my printer, putting together over 50 binders of information, giving presentations, and communicating with legislators. We had to learn how to play the game of legislation, learn the unspoken rules, and strategies to help our bill become known and successful. We used the media to our advantage. We were in the newspaper several times, had an interview on the radio, and were on TV. “Today, we have a CMV education law.”

As a result of the new law, Idaho’s Department of Health and Welfare is now required to provide information on cytomegalovirus “to the public, particularly pregnant women and women who may become pregnant.” The bill specifically mentions providing information to “(a) Health care providers licensed under title 54, Idaho Code, offering care to pregnant women and infants; (b) Daycare and child care programs and facilities licensed under title 39, Idaho Code, and persons employed by such programs or facilities; (c) School districts and persons offering health care or health education in a school district; (d) Religious, ecclesiastical or denominational organizations offering children's programs as part of their services, and persons employed or volunteering for such programs…”

Jessica said, “Our group, the Idaho CMV Advocacy Project, still gives presentations and we are working with the Department of Health and Welfare. The Department is creating online information, flyers and brochures to distribute throughout the state.”

Jessica concludes, “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.”

Although some states are providing CMV prevention education, much still needs to be done. According to a recent survey, only 18.5% of licensed “in-home” daycare providers in the U.S. have heard of CMV and providers "do not know how to appropriately sanitize surfaces to reduce spread of disease” (Thackeray et al., 2016).

For example, many providers use diaper wipes to clean a surface, but diaper wipes do not sanitize it. Given that “61 % of children under the age of 5 are cared for in a child care facility...Intervening with child care providers and parents through child care facilities are key opportunities to reduce prevalence of CMV infection and other diseases” state the authors.

U.S. childcare providers 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 childcare provider’s case in his 2012 book, The Stealth Virus. His first chapter features an in-home childcare 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. Griffith states, “Every time she picked up a child she wondered if this was the one who had killed her baby.”

Some countries, however, try to protect the offspring of their childcare providers from CMV. In Queensland, Australia, they  relocate workers who are pregnant, or “expect to become pregnant, to care for children aged over two to reduce contact with urine and saliva” (Queensland Government, Australia,  Cytomegalovirus (CMV) in early childhood education and care services, Workplace Health and Safety).

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" (Stranzinger et al., 2016).

If I had known about CMV before becoming pregnant with Elizabeth, I would have done the following:

1.      Asked my doctor for a blood test to determine if I had a primary CMV infection. If I did, I would have waited to get pregnant.

2.      If the blood test showed I had never had CMV in my life, I would have:

·       Declined to volunteer in our church Sunday school with children under the age of three.

·       Declined to care professionally for children under the age of three in my home childcare center.

·       Practiced careful hygiene with my own toddler—I would not have shared food or cups with her or kissed her near the mouth and I would have washed my hands every time I fed her, wiped her nose, picked up her toys, changed her diaper, etc.

3.      If the blood test revealed I had contracted CMV at some point in my life but I was no longer actively infected, I would have:

·       Discussed with my doctor if I should still volunteer in our church Sunday school with children under the age of three since there are different strains of CMV (though the chances of disabilities in my newborn from congenital CMV would have been greatly reduced).

·       Discussed with my doctor if I should still professionally care for children under the age of three in my home because of the different strains of CMV.

·       Still practiced careful hygiene with my own toddler—I would not have shared food or cups with her because of the different strains of CMV. I would have not tried to save time by using diaper wipes, which are ineffective against CMV, to clean my hands and surfaces, and I would have still needed to wash my hands after picking up toys, wiping noses, etc.

4.      Clearly, for a woman of childbearing age to remain working in childcare, she needs to know and practice the same hygiene protocols maintained by healthcare professionals. “Although CMV is spread through contact with infected body fluids, including urine and saliva, the risk of CMV infection among healthcare workers appears to be no greater than that among the general public. This may be due in part to adherence to standard precautions by healthcare providers when handling body fluids and the lower amount of personal contact in the healthcare setting,” states the Connecticut Department of Public Health.

The Big Problem: Since most childcare center directors and providers have never heard of CMV, how can they know of their occupational risk and what to do about it? These are the obstacles that must be overcome:

1.      It is not a doctor’s standard of care to provide CMV prevention education.

2.      There is no national protocol to handle the problem of CMV in childcare, though some states, such as Utah and Idaho, passed laws to ensure childcare providers receive CMV education.

3.      There is no national CMV awareness campaign for all women of childbearing age. Mothers of toddlers excreting CMV are at even greater risk than childcare providers.

To read the rest of the book, Help Childcare Providers Fight CMV, order it from Amazon for $6.99. Contact author if you would rather download her 133-page manuscript.

Topics Covered in Help Childcare Providers Fight CMV:  

1.      Had I known: Childcare providers unaware of occupational risk for CMV.

2.      Why haven’t you heard of CMV?

3.      15 reasons why childcare providers (really, all women of childbearing age) need to know about CMV.

4.      Message to childcare providers. Includes prevention tips.

5.      CMV prevention resources: Flyers and Fairytales.

6.      Possible protocols for childcare centers.

7.      “Childcare Providers Fight CMV” How can you help? Sample letter to healthcare providers.

8.      Public policy needed to protect childcare providers. Sample letter to public health and labor legislators.

9.      Fact sheet for policy makers.

10.   CMV legislation: What worked (and didn’t) in Connecticut

About Lisa Saunders: Need her to speak?

Bibliography

Appendix: “Share a meal, not the germs!” Fairytale educates students and families how to set the table and share a meal without sharing the germs.