Frequently Asked Questions

The following information is meant to be informative, but is not intended to take the place of medical advice from a qualified physician. If you are pregnant or planning to become pregnant, please address your concerns with your doctor.

Questions:

CMV Basics

CMV Transmission

How is CMV transmitted from person to person?
How is CMV transmitted from mother to unborn baby?
Is it appropriate for a child with CMV to participate in daycare/nursery?

CMV Advanced

CMV and Pregnancy

CMV Effects

Moving Forward

Where can I find the support of other families that know about CMV?
Where can I get more information?
What can I do to help spread the word?

Q: What is CMV?

A: CMV stands for cytomegalovirus. It is a member of the herpes virus family. CMV is very common and infects people of all ages worldwide. In fact, over 50% of people have been infected by the age of 40. Typically, CMV is harmless and an infected person may show no symptoms. However, CMV can cause serious problems for people with weakened immune systems and unborn babies. Once a person has been infected with CMV, it remains latent in the body for life and can be reactivated at any time.

Q: I’m a nurse/doctor/caregiver/parent/daycare provider. Why have I never heard of CMV?

A: This is complex and multifaceted, but here is a simplified explanation:

In the United States* CMV prevention education is not part of a doctor’s “standard of care.” That is, it is not on the list of things that doctors are required to talk to their patients about. As a result, not only are patients uninformed, doctors are often underinformed because it’s not on their radar. Usually, OB/GYN doctors have heard of CMV, but a) they don’t want to frighten their patients by telling them about CMV, b) they are unaware of the prevalence of CMV because both mother and newborn are often asymptomatic, c) they believe prevention methods are “impractical” an/or d) they aren’t confident in the effectiveness of preventative measures.
There is no national public awareness campaign and very little media coverage about CMV. It is not a hot button issue in our country, unlike current and former issues including HIV/AIDS and Zika Virus. Both HIV/AIDS and Zika are less prevalent than CMV, but receive much more publicity. Financial backing for medical research, vaccine development, prevention, and treatment tends to go to where there is public outcry.
Though the American Academy of Pediatrics has recommended that women of childbearing age in childcare roles should be counseled about CMV risks, there is no federal law to ensure compliance. Furthermore, there is no central childcare licensing division to enforce CMV prevention and education in childcare centers.

*You are more likely to have heard of CMV if you live outside the U.S. in countries such as Italy, France, Germany, or Australia. In the U.S., you are more likely to have heard of CMV if you are in the medical field and work with patients who are immune compromised, such as individuals with HIV, or if you work in phlebotomy or hematology.

Q: Can CMV be prevented?

A: Good hygienic precautions have been shown to greatly reduce a person’s chance of acquiring CMV. More specifically, the efficacy of simple hygienic precautions among women at high risk of contracting CMV for the first time during pregnancy was greater than 75%! CMV is most readily transferred via wet bodily fluids including saliva, mucus, and urine. The most important precautions include: 1) Wash your hands often, especially after wiping runny noses or drool, changing diapers, feeding young children, and picking up toys. 2) Do not share food, drinks, straws, or utensils with children. 3) Avoid contact with saliva when kissing a child. Kiss on the forehead. 4) Do not put a pacifier in your mouth. 5) Do not share a toothbrush with a child.

Q: I got tested for CMV. What do my lab results mean?

A: There are 3 possibilities:

IgG positive and IgM negative. You have had a previous infection that is now dormant. When pregnant, this is the best case scenario because you have antibodies to protect your baby from CMV. Though it is possible to have a recurrent CMV infection, the statistics are in your favor. You are less likely to have an active infection while you are pregnant and, even if you did, your baby is less likely to be negatively affected by it.

IgG negative and IgM negative. You have never acquired CMV. You are at risk for a primary infection, which could be passed to your baby. It is particularly important for you to take hygienic precautions and consider modifications in your home/work environment if you live/work with children ages 0-5.

IgG positive and IgM positive. You have a current or recent CMV infection. If you are not pregnant, delay conception until your IgM falls to a favorable level. This could take up to one year. If you are pregnant, your baby should be monitored more carefully, with more frequent ultrasounds. If there are concerns about the baby’s health/development, an amniocentesis will determine whether the baby has a CMV infection.

Q: Is there a vaccine?

A: Unfortunately, no. However, there are many professionals who recognize the value of a potential CMV vaccine and as of 2018, there are several vaccine candidates currently under clinical development. Experts believe that a CMV vaccine is possible within the next decade. Awareness and support of the public, the government, and pharmaceutical companies are going to be key to keeping the momentum going.

Q: How is CMV transmitted from person to person?

A: CMV is seldom transferred via casual contact. It is most easily transmitted via direct contact with the bodily fluid (i.e. saliva, mucus, urine, tears) of an infected person. For this reason, it is especially common in children under the age of 5 who participate in group childcare settings. Toddlers mouth toys, need help wiping their noses, and require toileting assistance. CMV is easily passed between children and without proper precautions, from children to adult caregivers. Contact with the saliva or urine of young children is a major cause of CMV infection in pregnant women. Other methods of infection that are much less frequent include mother to child transmission via breastfeeding and partner to partner transmission via sexual contact.

Q: How is CMV transmitted from mother to unborn baby?

A: If a woman has a primary or recurrent infection of CMV during her pregnancy, the infection can be transmitted from mother to unborn child through the placenta. Approximately 90% of babies born with CMV will not have any obvious symptoms. Even so, many will go on to have symptoms such as hearing loss, vision impairment, or cognitive impairments.

Q: Is it appropriate for a child with CMV to participate in daycare/nursery?

A: Absolutely. Many people mistakenly believe that an infant/toddler who is known to have CMV is a danger to the other children and workers. However, CMV is often being shed by young children, unbeknownst to anyone. In fact, one study showed that 40-100% of 2-year-olds in childcare settings were excreting CMV at any given time. In other words, CMV is so ubiquitous that excluding one child is unlikely to eliminate CMV. When spread to other children and adults, CMV is typically harmless.

Q: Is CMV a sexually transmitted disease (STD)?

A: No, not in the traditional sense. Though CMV is sexually transmissible, most infections are not transmitted that way.

Q: What is the difference between CMV and cCMV?

A: cCMV stands for Congenital CMV, meaning that the infection was present at birth. The extra “c” distinguishes cCMV from any other CMV infection, which can occur at any point across the lifespan (and is much less harmful to a person’s development). A baby must be tested and diagnosed with cCMV within the first few weeks of life for an accurate diagnosis.

Q: What is a “primary” infection?

A: In regards to CMV, a primary infection is the first time a person has been exposed to and infected by the virus. A nonprimary CMV infection refers to any time the CMV infection is reactivated. During a primary infection, the individual has no antibodies to protect her from a CMV infection. Like chicken pox, once a person has had CMV (primary infection), she has it for life and it remains dormant in her system. Occasionally, CMV can be reactivated (nonprimary infection. Primary infections have been shown to pose a greater risk to the fetus than nonprimary infections. However, the risk of transmitting CMV to your unborn baby is not eliminated by a mother’s history of primary infection.

Q: What is “shedding?”

A: Viral shedding occurs during an active CMV infection. The virus can be shed through bodily fluids including saliva, mucus, blood, semen, urine, tears, and breast milk. Shedding can happen without any visible signs and without causing any notable symptoms.

Q: What is vertical transmission?

A: Vertical transmission refers to an infection that is transmitted directly from mother to infant during pregnancy or childbirth. This is in contrast to horizontal transmission, which refers to transmission of disease from person to person of the same generation. Congenital CMV is a vertically transmitted virus.

Q: What is a TORCH infection?

A:TORCH is an acronym that refers to a series of congenital infections that are known to cause birth defects. Each type of infection is vertically transmitted from pregnant mother to fetus or newborn. TORCH stands for Toxoplaxmosis, Other (Syphilis, Varicella, Zika, etc.), Rubella, Cytomegalovirus, and Herpes. Some say this acronym is outdated, as the “Other” category keeps growing to encompass more diseases. CMV has been reported to me the most common TORCH infection in the U.S.

Q: How does CMV compare to Zika?

A: CMV and Zika are very much alike. They are both vertically transmitted TORCH infections. They both can cause microcephaly and an range of considerable developmental issues. However, it is important to know that CMV affects thousands of babies each year in this country, while Zika affects less than 100. CMV has been around for a long, long time and rates of infection have remained fairly stable. Zika was much more recently discovered, particularly in the United States. Because Zika was new to us, it was scary, and thus has garnered a lot of media attention.

Q: I’m pregnant. How will I know if I contract CMV?

A: You won’t, necessarily. CMV is called the “silent” virus because in many cases a person has no symptoms. However, for some, there are flulike symptoms such as sore throat and fatigue. If at any point you feel that something isn’t right, ask your doctor. A CMV test can be ordered at any point. It is a simple blood test that is inexpensive and typically covered by insurance.

Q: I’m pregnant. How will I know if my unborn baby has been infected with CMV?

A: The only way to know for certain is to have the baby tested for CMV via amniocentesis. However, your doctor’s job is to look out for the health of your baby. There are many important signs that your doctor looks for whether he/she is familiar with CMV or not. In utero, a CMV-infected baby can show many (or no) signs including restricted growth, microcephaly, enlarged ventricles in the brain, brain calcifications and/or cysts, swollen liver and/or spleen, ureter and pelvic abnormalities, abnormalities of amniotic fluid, and placental thickening. Each of these symptoms should be evaluated and monitored. Don’t hesitate to ask your doctor about CMV if you are having complications of any sort.

Q: I’m pregnant. What should I ask my doctor about CMV?

A: Tell your doctor that you have learned that CMV is the leading infectious cause of birth defects and is more common than many conditions that are routinely monitored/screened for. You can ask your doctor to test your CMV status. Also ask what you need to do to protect your baby from CMV. Don’t hesitate to ask your doctor about his/her knowledge/experience of CMV. The National CMV Foundation website is a great starting place for your physician if he/she wants more information. Furthermore, the website has great printable resources for you to take with you to your doctor’s office, if you like. Many doctors in the U.S. are not fully up-to-speed regarding the facts of cCMV and might benefit from these resources. If you feel that your doctor minimizes your concerns, do not hesitate to seek a second opinion.

Q: If I find out my unborn baby has been infected with CMV, can anything be done?

A: Yes! This can be tricky, though. In the U.S., the standard methods of care for prenatal CMV are not what they are in other countries. Here, your doctor will likely give you the options of “wait and see” or pregnancy termination. Many doctors are not up-to-speed on recent research studies showing the positive effects of CMV Immune Globulin infusions (CytoGam). Sometimes, antiviral medications are also an option for helping reduce viral loads. Do not hesitate to do more research yourself, ask your doctor about CytoGam and antivirals and/or get a second opinion from a high-risk OB/GYN and/or infectious disease doctor.

Q: Does CMV cause miscarriages?

A: Quite possibly. Research has associated CMV infection and increased risk of miscarriage. However, the specifics of CMV’s role in miscarriage are still largely unknown.

Q: I had CMV during my last pregnancy. Should I be worried for next time?

A: Not really. Assuming you had a primary infection during your last pregnancy, you now have antibodies to protect you and your subsequent pregnancies. That said, it is possible that CMV could become reactivated. The probability of this happening and affecting your fetus are slim. Before getting pregnant, it would be wise to have your CMV status tested to make sure that you are not still shedding the virus. Viral shedding typically ceases within a year of the onset of the active infection. As with any pregnancy, you should still take care in using precautions to protect yourself. Avoid all exposure to the bodily secretions of any little ones in your care.

Q: My child was born healthy, but has developed unexplained hearing loss/seizures/intellectual impairment/vision impairment. Could CMV be the cause?

A: Yes. Many babies are born with a CMV infection but have no visible symptoms at birth. Because babies are not routinely screened for CMV at birth, you may never know whether it is the cause of your child’s current concerns. A congenital infection must be confirmed within the first few weeks of birth. For example, if you have your 6-month-old tested for CMV and the results are positive, you will not know whether the CMV was acquired prenatally or postnatally. Hypothetically, it could be possible to track down your child’s newborn dried blood spot card from the laboratory and have any residual blood tested for CMV. This could be a long shot, but worth considering. Check out babysfirsttest.org for contact information.

Q: My baby was born with CMV. What can I expect?

A: The outcomes of babies with cCMV range drastically. It seems that the time at which the baby contracted the virus in utero has some impact on the severity of outcomes, but not always. Babies born asymptomatic seems to have better outcomes that babies born symptomatic. The following graphic from National CMV Foundation shows the broad spectrum of possibilities, but is not all inclusive.

Q: Where can I find the support of other families that know about CMV?

A: Join the CMV registry at the Baylor College of Medicine. As a member, you will regularly receive an updated list of other CMV families in your state. Check out CMV in social media. On Facebook, there are many CMV-related pages. Try CMV Mommies or see if your state has an advocacy chapter that can put you in touch with other parents (ie. Idaho CMV Advocacy Project, Ohio CMV Advocacy Project, California CMV Project, etc.). Check out Special Needs on social media. Try joining social media pages for special needs families and asking if there are other CMV families in the mix. Talk to your child’s doctors/therapists. Of course, they have to abide by strict privacy policies. However, it never hurts to ask one of your child’s providers, “I’m looking for another CMV mom to talk to. Would you mind passing my name and number on to other families you might know who are dealing with CMV?”

Q: Where can I get more information?

A: Thankfully, there is more and more good information out there about CMV. We recommend checking out National CMV Foundation, Utah Department of Health, California CMV Project, and the Center for Disease Control. Soon, the Idaho Department of Health and Welfare will include CMV on their website as well. When the time comes, that link will be provided here under the Resources tab.

Q: What can I do to help spread the word?

A: Helping with CMV advocacy doesn’t have to be difficult. You can start by simply asking your doctor about CMV. Ask your pregnant friends if they have heard of CMV. You can print out flyers from this website or the National CMV Foundation website to give to doctors/caregivers/friends/teachers. Support your state’s efforts for CMV-related legislation. Speak about your own experience to care providers, doctors, therapists, or at conferences for healthcare, pregnancy, and/or early childhood. Share your personal story with your state’s advocacy group and/or the National CMV Foundation. The National CMV Foundation website has a page with more ideas and resources. Check it out.