Congenital Cytomegalovirus Frequently Asked Questions

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FAQs for Families
FAQs for Providers
FAQs for Submitters

Families

We understand that hearing of your baby having an abnormal lab test can cause anxiety. We want to answer your general questions to make this time a little easier for you and your family. Your baby’s clinic and health care team will answer questions that apply to your baby.

My baby’s blood spot screen came back with cytomegalovirus (CMV) detected, what does this mean?

If your baby’s newborn screen report says that CMV was detected, it means that cytomegalovirus (CMV) was found in your baby’s blood. Your baby may have a disease called congenital CMV, but more testing is needed. 

Most babies born in Minnesota have a few drops of blood collected on special paper soon after they are born, this is the blood spot portion of their newborn screen. The dried blood is sent to the Public Health Laboratory in St. Paul and tested for over 60 conditions that are rare, serious, and difficult to identify in newborns. To learn more about newborn screening, please visit Newborn Screening Introduction.

If the virus was found in my baby’s blood, what happens next?

Your baby’s health care provider will test your baby’s urine to confirm that they have congenital CMV. This is ideally collected before your baby is 21 days old.

It can be a little tricky to collect a urine sample from a newborn. Newborn urine collection is done by sticking a special bag inside your baby’s diaper to collect the urine the next time your baby pees. It may take a few attempts, but it doesn’t hurt your baby.

If CMV is found in the blood and the urine, then we know that your baby has congenital CMV.

Why does the urine need to be collected before the baby is 21 days old?

Babies can catch CMV just like they catch other germs. They might get the virus from a small child or even from breastmilk (this is okay, if they get CMV after they are born, it is like a mild cold). Scientists think that if CMV is found in the baby’s blood or urine before three weeks of age, that it is likely that the virus infected the baby before birth.

My baby’s urine test came back positive for CMV, will my baby be OK?

If your baby’s urine test and newborn screening blood spot test both detected CMV, it is likely that your baby was born with congenital CMV (cCMV). Most babies with congenital CMV are healthy and never experience health issues because of it. Some babies with congenital CMV have health concerns that are not easy to see. That is why your health care provider or clinic will help arrange some tests for your baby to check for hidden complications. Each baby is different, and these extra exams will help your health care provider determine what kind of care your baby might need. 

Research suggests that about 20% of babies born with congenital CMV may experience some health concerns. This could range from mild hearing loss (which may develop in early childhood) to more severe complications related to hearing, walking, learning, and seeing. 

Because it is hard to tell which babies will remain healthy and which ones may develop health concerns later, MDH recommends all babies with congenital CMV have additional follow-up appointments for their early childhood.  

What additional appointments will my baby need? 

Your baby will likely see a pediatric audiologist for hearing testing. This testing tells more about the baby’s hearing than the screening test that was done right after birth. Even if your baby passes the hearing testing, more checks by the audiologist are recommended. Some babies with congenital CMV have normal hearing at birth but because of damage from the virus they can lose hearing in one or both ears. 

Your health care provider may also recommend an ultrasound of the head. You may have had an ultrasound during pregnancy, so you have seen the machine work. For this test the technician puts the gel on the baby’s soft spot and makes images of the brain for the doctor to check out. Sometimes they have trouble getting good pictures and recommend extra testing using different machines like the MRI and CT scanners. If the images are normal, no repeat testing is needed. 

Your baby needs blood tests to make sure the blood and liver are working properly and were not damaged by the virus. If the results are normal, no more blood tests are required. 

Your doctor will also recommend that the baby have an eye exam done by a specialist in children called a pediatric ophthalmologist. This test checks to see if any of the inner parts of the eye were damaged by the virus. If it is normal, the eye test does not need to be repeated. 

Is there a treatment available? 

Most babies with congenital CMV will not need treatment. Some babies may develop hearing loss as they get older, so we recommend that all babies diagnosed with congenital CMV have regular audiology exams for a few years after they are born. This way, if your child does develop hearing loss, it can be identified earlier, and they can receive the care and/or intervention they may need. 

Some babies with specific symptoms of congenital CMV may be eligible to receive antiviral medicine. It is important to discuss the risk and benefits of antiviral therapy with a pediatric infectious disease specialist.  

Other options for intervention include: 

• Early intervention services to promote healthy development.
• Managing current signs and symptoms.
• Monitoring for new signs and symptoms, especially hearing loss.
• Family support.

How did my baby get CMV before they were born?

CMV is a very common virus. Many adults and children get it and it seems like “just a cold.” But CMV can be harmful to a baby developing during pregnancy.

When a baby is born with a CMV infection, it is called congenital CMV (cCMV). This occurs when a pregnant person gets a CMV infection, and the virus passes through the placenta during pregnancy. According to the CDC:

• 1 out of every 200 babies is born with congenital CMV.
• Most babies born with congenital CMV are healthy.
• Congenital CMV is the most common infectious cause of birth defects in the United States.
• About 1 out of 4 (or 25%) of babies born with congenital CMV will have hearing loss either present at birth or develop it in childhood.

May I breastfeed my baby with cCMV?

Yes, breastfeeding a baby with congenital CMV is safe. Talk to your baby’s health care provider if you have any concerns about feeding your baby.

May my baby attend childcare?

Yes, infants with congenital CMV may attend childcare. CMV infection is very common in babies and young children and the childcare provider probably has other children in attendance who have or had a CMV infection. Proper handwashing, hygiene habits, and environmental cleaning should be routinely practiced by all childcare providers. These steps can help to reduce the risk of CMV transmission. Children who have congenital CMV should not be excluded from any childcare setting. All children can spread CMV, not just those with a congenital CMV diagnosis.

What should I tell my family and friends about congenital CMV if they ask about getting CMV from my baby?

CMV infection is very common in babies and young children. All children can spread CMV, not just those with a congenital CMV diagnosis. It is usually passed from person to person through body fluids like urine and saliva. One of the most common ways people can be exposed to CMV is through contact with young children who have recently had the virus because high amounts of CMV can stay in a child’s urine and saliva for months after infection. Friends and family members should practice good handwashing after changing diapers or touching the secretions (saliva, mucus) of all children. Friends and family members who are pregnant or immunocompromised and concerned about their risk of exposure to CMV should also speak to their health care provider.

Providers

Minnesota is the first state to screen newborns for the presence of CMV and there will likely be questions from clinicians, some of which may be answered below. There will be questions for which there is no answer—yet. The MDH Newborn Screening Program has made a strong commitment to review our data and to share so that all professionals caring for infants on newborn screening identified with congenital CMV are able to provide evidence-based care. 

What is the difference between acquired CMV and congenital CMV?

CMV is quite common, and generally presents as a minor cold for children and adults. Newborns can become infected from breastfeeding or contact with others (especially young children) who are shedding the virus [if this is the case, they would have acquired CMV, not congenital CMV (cCMV)].

Congenital CMV occurs when a pregnant person develops an active CMV infection, and the virus passes through the placenta during pregnancy. Although both are caused by the same virus–CMV–they have very different symptoms and outcomes.

For additional information, please go to the MDH pages: Newborn Screening CMV Overview and Cytomegalovirus (CMV) and Congenital CMV.

Why did MDH start screening for congenital CMV?

Although infants who are severely affected with congenital CMV are usually recognized by clinical exam, about 90% of children show no obvious clinical symptoms at birth. Screening for cCMV will help identify infants at risk for developing hearing loss and who may benefit from follow-up monitoring and early access to interventions and treatment. In Minnesota, we expect to find CMV virus in about 300 newborns annually through newborn screening.

How is cCMV diagnosed?

If CMV is detected in the screening specimen, primary care providers will be contacted by an MDH genetic counselor. The recommendation will be to collect a bagged urine sample for PCR testing to confirm infection. Urine testing for CMV before 21 days of age is meant to separate, congenital from acquired infections and contamination.

Newborn Screening staff may be reaching out to your office to obtain evaluation results either by phone or fax. Releasing the requested information to our program is permitted by HIPAA.

Could the screening result be picking up an acquired infection?

CMV is very common and the filter paper used in newborn screening is very absorbent; because of this, there is a chance that the specimen could be contaminated during collection and/or handling. Urine PCR for CMV will corroborate the screening result.

If the baby is older than 21 days, it could be that the CMV that was detected on screening could have been from an acquired infection rather than a congenital infection. In these situations, please consult with a pediatric infectious disease specialist for clinical guidance.

Why is it recommended that the urine specimen be collected before 21 days?

CMV testing cannot distinguish between a congenital or acquired infection. Virologists think that a positive urine PCR assay before 21 days points to in utero infection. Confirmatory testing is most accurate when performed before 21 days of age.

We were unable to collect a urine specimen before 21 days. What should we do now?

Collect the urine as soon as possible for urine CMV PCR.

The urine PCR testing was negative, what does this mean?

This is not expected to happen often. It most likely means that the screening specimen was contaminated and no additional testing is needed. However, if the baby has signs or symptoms of congenital CMV, please consult with a pediatric infectious disease specialist to help sort out these discrepant results.

The newborn screening result and the urine PCR were both positive for CMV. Does this mean my patient has congenital CMV (cCMV)?

Yes, it does. If the urine PCR is positive, coupled with the earlier newborn screening result, it is likely that this is a congenital infection.

What additional evaluations are recommended for children with congenital CMV?

Additional evaluations for babies with confirmed infections may include:

• Physical examination noting hepatosplenomegaly, rashes, growth (microcephaly, IUGR (intrauterine growth restriction), SGA (small for gestational age)), jaundice, hypotonia.
• Obtain a complete blood count (CBC) and liver function tests (LFT) to assess for signs and symptoms of anemia, thrombocytopenia, and hyperbilirubinemia.
• Schedule a pediatric diagnostic audiology evaluation, even if the infant passed the newborn hearing screen. Since hearing loss can be present at birth or occur later in childhood, regular audiologic monitoring will be recommended.
• Schedule a pediatric ophthalmology examination and follow-up as recommended.
• Obtain baseline cranial ultrasound. A brain MRI may be recommended to clarify nonspecific ultrasound findings.
• Perform developmental assessments at regular intervals throughout childhood with a standardized screening tool.
• Refer to Help Me Grow Minnesota
  • Congenital CMV is a diagnosed condition that may hinder development. All children with cCMV ages 0-5 are eligible for connection to the local school district through the Help Me Grow referral system for possible evaluation and early intervention services.
• Educate and support parents; especially given the possible uncertainty and anxiety about whether symptoms will occur or not.

If your patient is symptomatic, consult with a pediatric infectious disease specialist for guidance on treatment options, which may include a discussion of the risks and benefits of antiviral therapy and who is eligible.

Though audiological monitoring protocols for children with cCMV have historically varied among providers at both the state and national levels, Minnesota audiologists, parents, and other stakeholders convened and suggested the following clinical protocol for hearing assessment, and ongoing monitoring for emerging/progressive hearing loss. Audiology Guidelines for Infants with Congenital Cytomegalovirus can be found at MDH Improve EHDI.

What is the treatment?

Congenital CMV cannot be cured and most babies will not need treatment. However, children with cCMV may benefit from regular clinical monitoring (such as audiology exams) and supportive therapies.

 Some interventions that might benefit all children with cCMV and their families include:

• Developmental assessments at regular intervals throughout childhood with a standardized screening tool.
• Referral to Help Me Grow Minnesota.
• Congenital CMV is a diagnosed condition that may hinder development. All children with cCMV ages 0-5 are eligible for connection to the local school district through the Help Me Grow referral system (www.HelpMeGrow.org) for possible evaluation and early intervention services.
• Education and support to parents; especially given the possible uncertainty and anxiety about whether symptoms will occur or not.

Some children may benefit from antiviral medication:

• Most babies with cCMV do not need antiviral medicine. Treatment with antiviral medicine may be recommended for some babies with specific symptoms of cCMV. Consultation with a pediatric infectious disease specialist is advised in determining eligibility for treatment with antivirals. The decision to treat involves weighing the risks and benefits. The decision to initiate antiviral therapy should involve a peds ID specialist and the family.

My patient looks like they have cCMV (IUGR, “blueberry muffin rash,” calcifications on cranial ultrasound), but no CMV was detected on screening. Could they still have cCMV?

Yes. Some newborns infected with CMV before birth will not have enough virus in their blood to be detected via newborn screening. As a result, some cases of cCMV will be missed. Clinicians are advised to maintain a high index of suspicion for patients whose clinical presentation suggests cCMV but CMV was not detected on screening. We recommend testing for CMV via a urine PCR (preferably before 21 days of age) and consult with a pediatric infectious disease specialist.

When should the Pediatric Infectious Disease Specialist be contacted?

MDH recommends that a Pediatric Infectious Disease Specialist be contacted in the following cases: 

• Any baby with CMV detected through screening who has a positive urine PCR test AND baby is symptomatic;
• baby is over 21 days old AND had CMV detected by screening;
• baby has symptoms of cCMV, regardless of screening and clinical test results; or
• additional guidance is needed.

Submitters

Do we need to do anything differently now that newborn screening includes CMV?

All procedures remain the same. Please advise your staff of one additional precaution. Researchers suggest that contamination of the spot can lead to false positive screens for CMV. Sneezing, coughing, or touching the card after handling body fluids can inoculate the specimen with CMV. Since the filter paper is very absorbent even a small amount of virus can be absorbed, spread into the blood spot, and be amplified by the PCR. Universal precautions and masking should minimize this risk.