“What You Need to Know about Congenital CMV”

by

Lisa Saunders

Did you know that if you kiss a two-year-old on the cheek you risk harming your unborn child? I didn’t. And most women don’t.

The moment my daughter Elizabeth was born, I felt a stab of fear.  I knew there was something very wrong.  My immediate thought was, "Her head looks so small - so deformed."  Within 12 hours a neonatologist told me why.

A CAT scan revealed calcium deposits throughout Elizabeth’s brain and blood tests showed that she had been infected with cytomegalovirus (CMV) in the womb. The neonatologist said that if Elizabeth lived, she would “never roll over, sit up, or feed herself."   He continued, "Her breathing is irregular, her color is bad and she startles violently whenever people touch her.  I don't even know if she can see or hear."

What was CMV? My obstetrician never warned me about it. How had I caught it? According to the CMV literature, between 50 and 80 percent of adults in the United States are infected with it by the age of 40 without ever realizing it. If a woman contracts it during pregnancy, however, it can be devastating to her developing fetus. Most women won’t be aware they are infected because it is often a “silent” virus or there may be symptoms such as fever, sore throat, fatigue, and swollen glands. Women who have young children at home or work in daycare centers are at a higher risk for catching it because preschoolers are the majority of carriers, shedding it through their saliva and urine. Women get the child’s saliva or urine on their hands and then inadvertently touch their nose or mouth or eat something without washing their hands first, allowing the virus to enter.

Although I could have contracted CMV from my own two-year-old, I had unknowingly put Elizabeth at greater risk by running a licensed daycare center for preschoolers in my home and by caring for infants in Sunday School. I felt sick at what my lack of knowledge did 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.

According to the Centers for Disease Control and Prevention (CDC), 1 in 150 children is born with CMV infection and approximately 1 in 750 children is born with or develops permanent disabilities due to CMV. Congenital CMV is the nation's leading infectious cause of mental retardation and nonhereditary deafness. “Congenital CMV is as common a cause of serious disability as Down syndrome, fetal alcohol syndrome, and neural tube defects.”

Despite the statistics from the CDC, obstetricians STILL do not routinely warn their patients. Amanda McClaren of Fort Worth,Texas, whose son Marcus died at the age of three in 2001, wrote to me, "I have tried for the last eight years to get the obstetrician s in the Dallas/Fort Worth area to be more proactive about this devastating virus, but they blow it off as if it's nothing, or, like some have said, "not common enough to worry about really."

And congenital CMV education isn't just neglected in our country. Carmen Burton of England, the Coordinator of the Congenital Cytomegalovirus Association UK and mother of Natalie born with congenital CMV, shares my frustration.  "13 years ago we were told by my obstetrician that congenital CMV was so rare and yet I still get phone calls every week from people who are being told the same thing. I get so angry when I go to the Dr's surgery or hospitals and see posters for Rubella, Meningitis and Toxoplasmosis but nothing about CMV.  My aim is to raise enough money to get a CMV Awareness poster in every Dr's, midwife, and baby clinic in the UK."

Permanent Symptoms or disabilities resulting from Congenital CMV include mental retardation, hearing and vision loss, cerebral palsy, seizures and death. There are also life-long health issues to be faced including problems with lungs, bleeding, spleen, liver, feeding and growth.

The majority of infants born with CMV infection show no symptoms at birth or the symptoms are only temporary such as jaundice, low birth weight and purple skin blotches. But others, with no apparent disabilities at birth, may experience them later in life such as vision, and in particular, hearing loss as well as learning disabilities. Many parents and some in the medical community wonder if congenital CMV is a cause of Autism, but there have only been a few studies suggesting such a link, so they need to be interpreted cautiously.

Unfortunately, Elizabeth’s prognosis turned out to be fairly accurate. Yet I awoke on her 16^th birthday feeling so proud of her. How hard she had fought to stay with us to reach the “sweet 16” milestone, surviving major surgeries and several bouts with infections and seizures. Weighing only 50 pounds, she looked funny to strangers as a result of her small head and big adult teeth, but she was lovely to us with her long, thick brown hair, large blue eyes and soul-capturing smile. Although Elizabeth was still in diapers, could not speak or hold up her head, she was a very happy young lady.  She especially loved going to school and being surrounded by people, paying no mind to the stares of children who approached her in public.

Less than two months after Elizabeth turned 16, I dropped her 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 had always feared, "Mrs. Saunders, Elizabeth had a seizure and she's not breathing. We called 911."

While holding Elizabeth 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 Elizabeth did." I knew he was right. No one adored us like Elizabeth did.

My sorrow over her death is gradually being replaced by a passion to prevent others from suffering as she did. Since there is still no vaccine against this cruel virus, raising awareness is the only real hope.

To learn what can be done to reduce congenital CMV infection, I contacted D. Scott Schmid, PhD, Leader Herpesvirus Team, Centers for Disease Control and Prevention,  Carol Griesser, R. N., Research Nurse and Clinical Coordinator, Congenital CMV Longitudinal Studies, National Congenital CMV Disease Registry, Baylor College of Medicine, Texas Children's Hospital and Richard J Whitley, MD, a leading expert in the field of congenital CMV and Professor of Pediatrics, Microbiology, Medicine & Neurosurgery, The University of Alabama at Birmingham. 

Saunders: Do you think if obstetricians told their patients about CMV and how to reduce the likelihood of infection that there would be fewer cases of congenital CMV, and therefore fewer cases of permanent disabilities? 

Schmid: There have been studies, not definitive but nonetheless persuasive, that indicate simple precautions such as hand washing after diaper changes, feeding or bathing a child, wiping a child's runny nose or drool, and handling children's toys could substantially reduce the risk of CMV infection during pregnancy and subsequent congenital transmission.  

Saunders: Do you think it is possible that there are more than 1 in 750 children who suffer a permanent disability as a result of congenital CMV? 

Schmid: It is difficult to arrive at precise estimates for the disease burden of congenital CMV disease, primarily because the overwhelming majority of cases are not evident at the time of birth, and it is not usually possible to establish a definitive causal association with CMV more than a few weeks following birth.  In many instances, the development of symptoms, such as neurosensory hearing loss and mental retardation, may not manifest for a year or longer.  However, using available CMV studies and other available data, we estimate that between 4,000 and 11,000 new cases of congenital CMV disease occur every year in the US.  This represents a range of between 1/360 to 1/1000 births (0.1 to 0.3%).

Saunders: It seems that most women I’ve corresponded with, including myself, think they caught it from babysitting children or as a result of their other children being in daycare.

Griesser:  It is important to remember that CMV is most commonly spread in the family setting. Reason being is that in the home environment, families are more casual about hygiene and for instance may share eating and drinking utensils, food and beverage, or be hurried during diaper change and forget to immediately wash hands afterwards. This important fact about how CMV is commonly transmitted is printed in our CMV general information booklet and can be found on our web site: www.bcm.edu/pedi/infect/cmv

Saunders: I once read that viruses can live for hours on hard surfaces and even longer on soft ones. Given that, it seems almost impossible for a mother to remember to wash her hands every time she touches her couch and then rubs her nose or picks up an apple to eat.

Griesser:  Unlike some other viruses, cytomegalovirus is a very fragile virus that usually does not live on a surface beyond about 30 minutes time. Active CMV can be destroyed or rendered inactive by washing any contaminated objects with a 10% bleach solution (followed by rinsing the object). Objects that can't withstand the bleach solution disinfectant method, such as stuffed animals and pillows, should be put outside in direct sunlight for about a couple of hours. 

Saunders: When Elizabeth was about 13, she was assigned to a new class with a pregnant teacher. I heard there was concern about Elizabeth because she might be contagious. Was Elizabeth, who drooled and still needed her diaper changed, a threat to that teacher's unborn child?

Whitley: Yes, Elizabeth was a threat to the teacher's health. Children born with symptomatic congenital CMV excrete large quantities of virus for years if not decades.  

Saunders: I read that when anyone gets CMV, and apparently up to 80% of the population has been infected, they too can be shedding it on and off for the rest of their lives. Given that fact, should pregnant women be careful about EVERYONE’S bodily fluids?

Answer: This virus is ubiquitous.  Risk will vary according to profession and exposure. Day care providers are at the greatest risk.  However, it should be remembered that this virus can be transmitted by blood, organs, saliva, and sex.

Saunders: Are wearing gloves enough protection against CMV when changing diapers? A doctor told me that hands should still be washed with soap and water because they can get contaminated by the act of removing the gloves. Do you agree? 

Whitley: Our centers use both gloves and hand washing. 

Saunders: Do you think there should be universal newborn CMV screening?

Whitley: We are doing a very large nationwide study now to try to identify children at risk for hearing loss.  The real issue is what test should be used and will it be cost beneficial. 

Saunders: Do you recommend women considering having a baby get their own CMV status checked? I hear there is controversy on that point since women can catch other strains of CMV during the pregnancy. 

Whitley: Many obstetricians are moving toward uniform testing; when women learn about CMV they WANT to be tested, even though the American College of Obstetrics and Gynecology has not formally recommended it.  The issue is women's health.  Yes, women can reinfected with a different strain.  

Saunders: Since CMV only lives on surfaces for about 30 minutes, does that give women some hope that they can prevent contracting it by careful hand washing and refraining from kissing their children around their mouths and sharing food and utensils with them? 

Whitley: Yes, this is true. 

Whitley concluded with:  “As you know this is the most common congenital infection in developed society.  I only wish a vaccine was available that worked. RW”

If there are ways to prevent congenital CMV, then why aren’t women of child-bearing age being told about it? According to the 2005 article published in BioMed Central Public Health, "Washing Our Hands Of The Congenital Cytomegalovirus Disease Epidemic,” Drs. Cannon and Davis write: “Hygienic practices do not appear to be widely discussed by healthcare providers and prospective mothers are often unaware of both CMV disease and the potential benefits of hygienic practices. 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. The prevention message has been hindered by a sense that infection is unavoidable.”

Cannon and Davis argue that CMV infection is not unavoidable: “More than 100 years of evidence conclusively demonstrates that hand washing reduces risk of infection in a wide range of pathogens…Hand-washing programs reduced respiratory illness among military recruits and children in daycare and interventions involving hand sanitizers reduced absenteeism among elementary school teachers and children.” They suggest there are many inexpensive ways to educate women about congenital CMV, such as during their annual gynecological exams and during visits to the pediatrician’s office. Cannon and Davis conclude: “Given the present state of knowledge, women deserve to be informed about how they can reduce their risk of CMV infection during pregnancy.” 

After Elizabeth died, I joined the listserve CMV@LISTSERV.SYR.EDU, a parent support group for those with children born with congenital CMV. I asked the 98 members if they were cautioned about CMV, and if not, what they would have done differently had they known. 19 replied to my questions.

Most, like me, felt tragically uniformed by the medical community. Angela Davis of Cape Coral, FL, had young children while she was pregnant with her daughter Chloe, born in 2003. Chloe has cerebral palsy, developmental delays, progressive hearing loss and autistic-like behaviors. Davis was not educated about congenital CMV. She wrote: “I was so careful during my pregnancy, doing everything I could to protect her and WHAM out of nowhere--like lightning striking. It seemed so unfair that no one felt her life was significant enough to give the necessary precautions.” Davis stated that if she’d been warned, she wouldn’t have changed diapers or shared food and drinks with her children. Speaking of the pregnancy complication of toxoplasmosis, Davis continued: “It seems kind of silly that they tell you not to change the cat litter but forget to tell you not to change the baby.”   

Some women, whose husbands were ill during their pregnancy, realize that they could have gotten CMV from them and had they known that was a risk, they would have asked them to wear condoms and not kiss them on the mouth. Other parents who weren’t near little children and have no idea how they caught it just wished they had been informed to do what Lori LeClair of Ontario, Canada would have done: “I would have been insane about washing my hands, carrying around hand sanitizer 100 % of the time.”

When I asked the group if there were other questions I should have asked the group, one mother said she would like other parents to answer, “How have family members and friends reacted to your CMV child?  In my case, his father wanted a real child and wouldn't have anything to do with his son. My so-called friends wouldn't come near my son and wouldn't let their children near him. My family is very supportive, but they don't live close to us.”

Angela Davis also had a question she’d like answered from the group: “I would like to know what everyone sees for their child's future. I don't think a lot of people understand that we feel like we live on the edge of a cliff, waiting to see how far we will fall. That a lot of us keep a mental tally of the oldest surviving member of our group, praying for them to live on--to give us hope and guidance for the futures of all our children. That when we lose a child, part of us dies with the child.”

According the CDC, there is currently no treatment recommended for CMV infection in the healthy individual, including pregnant women. However, antiviral drugs ganciclovir and valganciclovir are being used for patients with weakened immune systems. Antiviral drugs are being tested in infants born with congenital CMV. Because of its strong side effects, ganciclovir should only be considered for infants with severe congenital CMV disease.

It has been several months since my husband and I lost Elizabeth. At times I miss her so much I can barely breathe. Yet at other times, I feel happy for her — never again will I see that look of terror in her eyes as a seizure begins and she can't catch her breath. Never again will she be sick or uncomfortable from the cerebral palsy that kept her body in a vice-like grip. She is finally free from congenital CMV.

Lisa Saunders can be contacted at saundersbooks@aol.com. To read more of Elizabeth’s life, visit Lisa’s website at www.authorlisasaunders.com and click on her Elizabeth page.

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