Frequently Asked Questions

Cytomegalovirus (CMV) is a common infection that is usually harmless. Once CMV is in a person’s body, it stays there for life. Among every 100 adults in the United States, 50–80 are infected with CMV by the time they are 40 years old. Most children and adults infected with CMV have no symptoms and may not even know that they have been infected. Others may develop a mild illness when they get infected and have the following symptoms: fever, sore throat, fatigue, and swollen glands. But since these are also symptoms of other illnesses, most people don’t realize that they have been infected with CMV. CMV can cause serious disease in people with a weakened immune system.

Women can be tested for CMV prior to pregnancy – ask your doctor to run CMV IgM and IgG antibody labs. If a woman has been exposed to a recent CMV infection, it is recommended that she wait until her CMV IgM antibody levels decline to an undetectable level and her CMV IgG avidity index climbs to a highly favorable percentage before trying to conceive. This can take anywhere from six to twelve months. It is important to wait until the CMV infection has resolved because it minimizes the risk of CMV transmission from the pregnant woman to her baby in utero. If you are already pregnant, you can request that CMV IgM and IgG antibody lab tests be added to your routine labs. These tests are relatively inexpensive and are covered by most insurance plans. If a CMV infection is detected during pregnancy, amniocentesis is an option during which a doctor obtains and examines a sample of amniotic fluid to determine whether the baby has congenital CMV.

Transmission of CMV is very rare through casual contact. CMV is spread by close contact with a person who has the virus in his or her saliva, urine, or other body fluids. CMV can be transmitted from a pregnant woman to her baby during pregnancy. CMV is common among healthy children one to three years of age who attend daycare and can easily spread the CMV virus among their peers. Contact with the saliva or urine of young children is a major cause of CMV infection among pregnant women, especially mothers, daycare workers, preschool teachers, therapists, and nurses.

In short, there is disparity between recommendations by the Centers for Disease Control and Prevention (CDC), the American College of Obstetricians and Gynecologists (ACOG), and actual clinical practice among OB/GYNs. In the United States, congenital CMV occurs in approximately 1 in 200 births, leading to permanent birth defects and developmental disabilities (including hearing loss, vision loss, and cognitive impairment) in approximately 1 in 750 children. Because a CMV vaccine is not yet available and treatment options are limited, renewed attention has been given to prevention of CMV infections among pregnant women through traditional infection-control practices, such as good hand hygiene. These hygienic practices have been encouraged by the CDC and ACOG, but recent studies show that very few OB/GYNs report counseling their patients about preventing CMV during pregnancy. These results emphasize the need for additional training of OB/GYNs regarding CMV infection prevention and for a better understanding of the reasons that physician knowledge regarding CMV transmission might not result in-patient counseling.

If you are aware that you are CMV seronegative or you are unsure of your CMV status, you should learn the basic steps that can help you to reduce your risk of exposure to CMV during your pregnancy: * Wash your hands often with soap and water for 15-20 seconds, especially after changing diapers, feeding a young child, wiping a young child's nose or saliva, and handling children's toys * Do not share food, drinks, or eating utensils used by young children * Do not put a child's pacifier in your mouth * Do not share a toothbrush with a young child * Avoid contact with saliva when kissing a child * Clean toys, countertops, and other surfaces that come into contact with children's urine or saliva

If you are experiencing an active CMV infection, most experts recommend that women wait six to twelve months before trying to conceive again. Unfortunately, providers do not have standardized counseling on this, each case is unique. Be patient, your peace of mind is worth the extra time consideration so the infection may appropriately resolve, ultimately ensuring a healthier start to pregnancy for you and your new baby.

CMV can be transmitted to an unborn child from a pregnant mother experiencing a primary or recurrent CMV infection. Approximately 1 in 200 children is born with congenital CMV infection and about 1 of every 5 children born with congenital CMV infection will develop permanent problems. CMV can cause serious disease in babies who were infected with CMV before birth (referred to as congenital CMV). Children born with congenital CMV may develop permanent medical conditions and disabilities, such as deafness, blindness, cerebral palsy, mental and physical disabilities, seizures, and death. Infants and children who are infected with CMV after birth rarely have symptoms or problems.

Congenital CMV can be diagnosed if the virus is found in a baby’s urine or saliva, within 2-3 weeks from birth. Congenital CMV can only be accurately diagnosed if the newborn is tested less than 21 days after birth because, after 3 weeks, it is hard to determine if the baby could have contracted the infection through nursing or by exposure to siblings or others who may be shedding, or passing, the virus. If you find out that you became infected with CMV during your pregnancy, talk to your pediatrician about having your baby tested for congenital CMV. The testing is relatively quick, simple and painless, and is covered under most insurance policies.

CMV is the most frequently occurring congenital viral infection in babies in the United States and is now the leading cause of non-genetic hearing loss in babies. It has been reported that this virus causes approximately one-third of all pediatric hearing loss. Hearing loss occurs in up to 75% of babies born symptomatic and 10-15% of babies born asymptomatic with congenital CMV. Hearing loss can progress throughout the course of these children’s lives, even into young adulthood. Hearing evaluations should be performed on a regular basis to detect hearing loss and its progression, and regular speech and language therapy should be a part of a child’s ongoing curriculum.

Babies born with congenital CMV can have widely diverse outcomes, and it is difficult to predict with any degree of certainty their future health or developmental prognosis. Babies born with congenital CMV may be born with birth defects and developmental disabilities, including: • Hearing loss • Vision loss • Mental disability • Microcephaly (small head or brain) • Intracranial calcifications • Lack of coordination • Cerebral Palsy • Feeding issues / Failure to Thrive (FTT) • Sleeping, Behavior, Sensory issues • Seizures • Death (in rare cases). Babies born with congenital CMV can appear to be either symptomatic or asymptomatic at birth. Please refer to our Parent Stories, Blog, or social media profiles to learn more about real-issues and outcomes. Many children do well and exceed every clinical expectation!

Currently, several medications are undergoing clinical trials or are licensed for the treatment and possible mitigation of the effects of congenital CMV. For pregnant women who have transmitted a primary CMV infection to their baby, administration of Cytogam, a CMV hyperimmune globulin, may lessen or reverse CMV symptoms in utero. For symptomatic newborns, both Ganciclovir and Valganciclovir have been evaluated in clinical trials and are recommended by CMV experts to treat congenital CMV disease. If you would like more information about clinical trials and CMV treatment options, speak with your doctor. If you require further support or assistance, please contact us.

Having one child with congenital CMV does NOT make you more prone to having another. There is no increase in risk for having another child born with congenital CMV. However, rushing into another pregnancy before your primary CMV infection is resolved may increase the risk of CMV transmission to your next baby.

Women who have experienced a CMV diagnosis during pregnancy, a fetal loss due to CMV, or a newborn with congenital CMV should discuss these factors with their doctor, who may recommend drawing CMV IgM and IgG antibody labs.

There is no CMV vaccine available to prevent congenital CMV. CMV vaccines are still in the research and development stage. The Institute of Medicine has ranked the development of a CMV vaccine as a highest priority because of the lives it would save and the disabilities it would prevent. Many experts believe that a CMV vaccine is possible within the next 10 to 20 years, but a CMV vaccine is unlikely to occur without the awareness and support of the general public, the pharmaceutical industry, and the federal government.

Potential target populations for the CMV vaccine include women of childbirth age, immunocompromised patients, and children. Due to the high incidence of congenital CMV transmission, CMV vaccines are usually designed for adolescent girls or women of childbirth age to prevent the vertical transmission of CMV. In addition, immunocompromised patients, including organ transplant recipients are a target population since they are at risk of CMV-related disease. In the future, to comprehensively prevent the spread of CMV infection, it is highly recommended that the CMV vaccine should be incorporated in the routine childhood vaccination.

According to ClinicalTrials.gov, approximately 10 or more pharmaceutical companies are working to develop a CMV vaccine. To date, the most efficacious vaccine is the gB (from Sanofi Pasteur), with the MF59 squalene adjuvant (from Novartis) in the phase ll clinical trial. Multiple clinical research organizations, clinical trial companies, and academic research centers are also dedicated for the launch of a more effective CMV vaccine.

There is no evidence that a CMV vaccine would contraindicate or impact other vaccines.

National CMV Foundation is a registered 501(c)(3) organization. Every contribution directly fuels our awareness, education and research programs. Your financial contribution is tax deductible.

Yes, absolutely. The National CMV Foundation logo is available for download as part of the Fundraising Toolkit. Please adhere to our brand guidelines for logo usage to ensure compliance and consistency.

Yes, although we are not legally permitted to share our tax exemption number with third-party fundraisers. Please email events@nationalcmv.org to make individual requests.

At the National CMV Foundation, our primary focus is educating women of childbearing age about congenital CMV. As such, we cannot always allocate resources to promote your individual event. We encourage you to use #stopcmv and #cmvawareness on social media to publicize your event. And don’t forget to tag @NationalCMV on Twitter, Instagram and Facebook! Additionally, our Fundraising Toolkit has a host of promotional resources to help get you started.

With so many incredible events, it’s impossible for us to promote them all. But that doesn’t mean we don’t want to hear about what you have planned! Be sure to tag @NationalCMV on Twitter, Instagram and Facebook and don’t forget to use #stopcmv and #cmvawareness. We’ll dedicate a monthly post via our social media profiles to promote upcoming events. You can also create an event or fundraiser on our Facebook page, or use our Crowdrise page. Thank you for supporting the cause!

To request a speaker, email events@nationalcmv.org a short description of your event, including date, time, location and number of people expected to be in attendance. Due to limited resources and high demand, we may not be able to honor all requests. Please submit requests 12 weeks before the event date.

To request volunteers, email events@nationalcmv.org with a short description of your event, including date, time, location and number of people expected to be in attendance. Due to limited resources and high demand, we may not be able to honor all requests. Please submit requests 12 weeks before the event date.

All donations made to the National CMV Foundation, including those made through our website, directly impact the growth and expansion of our programs focused on raising awareness of congenital CMV, providing prevention education for women of childbearing age, and influencing research priorities. As such, we cannot offer refunds for event expenses.

We can accept checks made payable to National CMV Foundation. All checks can be mailed to: National CMV Foundation PO Box 18322 Tampa, FL 33679. Be sure to include the name of your event and let us know if you have a specific fundraising page or campaign name to which we can attribute the donation. Download our offline donation form to help organize contributions.

We’re happy to provide you with a comprehensive Fundraising Toolkit to support your fundraising efforts. We can also provide written documentation to validate the legitimacy of your event as well as your relationship to National CMV. Email events@nationalcmv.org to get started!

We are in the business of saving babies! The National CMV Foundation offers parents, families, clinicians and researchers valuable resources, both online and offline, that are directed to awareness campaigns and pediatric research opportunities. Visit our Resources pages to read our blog, download informative literature, share your story, and get your frequently asked questions answered. 

All funds raised directly impact the growth and expansion of our programs focused on raising awareness about congenital CMV, providing prevention education for women of childbearing age, and influencing research priorities regarding CMV prevention, treatment and intervention as we work to eliminate congenital CMV. Specifically around research, we offer two grants with various cycles annually. 

A detailed reporting of finances can be found in our annual report.

Do you have an idea for a potential funding need or revenue stream? Let us know!

 

There are many ways to help and to participate in National CMV’s efforts. Whether you want to host an event, become a sponsor, or donate to the cause, we have an initiative for you. Learn more about how to get involved.

Please follow our socia media profiles for up to date information, and an opportunity to hear from and engage with other families dealing with a congenital CMV diagnosis. Click on the appropriate icons in the footer below so you may follow the accounts where you already are!