Conditions Congenital Cytomegalovirus

Congenital cytomegalovirus (congenital CMV) is a condition that can occur when a pregnant mother is infected with a virus called cytomegalovirus. Although the mother may not notice any symptoms, the virus can be spread to the developing baby during pregnancy. Most babies who are infected with cytomegalovirus before birth never develop any symptoms of the condition. However, some infected babies will be sick at birth or develop health problems later in infancy or early childhood. Babies with symptoms of congenital CMV at birth have the highest risk for long-term neurologic abnormalities such as hearing loss, vision loss, intellectual disability and problems with muscle tone or function. In some cases, detecting the infection early and beginning proper treatment immediately may help prevent some of the severe health outcomes associated with the condition.

Condition Type

Other Disorders

Frequency

Approximately one out of every 200 babies are born with congenital cytomegalovirus (congenital CMV) infection. However, only one in five babies with congenital CMV infection will develop symptoms of the virus or have long-term health problems.

Also known as

  • Congenital CMV

Follow-Up Testing

Your baby’s doctor may ask you if your baby is showing any of the signs of congenital cytomegalovirus (see Early Signs below). If your baby has certain signs, your baby’s doctor may suggest starting immediate treatment.

Testing for congenital cytomegalovirus (congenital CMV) is often performed in infants who do not pass their newborn hearing screening. Your baby’s doctor or the state screening program will contact you to arrange for your child to have additional testing. A sample of urine or saliva will be collected before your baby is 21 days old. If a saliva sample is taken, the inside of your baby's cheek will be swabbed. This must be done approximately 2 hours after the last feeding as cytomegalovirus could be present in breastmilk.

If the test shows that your baby has been infected with cytomegalovirus, it does not mean that your child will definitely have health problems. However, it is important to follow up with your baby’s doctor to discuss a recommended plan of care.

About Congenital Cytomegalovirus

Early Signs

Most babies who are infected with cytomegalovirus prior to birth never develop any symptoms of the condition. However, approximately 10% will have signs of congenital cytomegalovirus (congenital CMV) at birth.

Early signs of congenital CMV include:

  • Premature birth
  • Low birth weight
  • Large spleen and liver
  • Jaundice (yellowing of the skin and eyes)
  • Small head size
  • Skin rash
  • Seizures
  • Mineral deposits in the brain
Treatment

In some babies who have symptoms of congenital cytomegalovirus (congenital CMV) at birth, antiviral medications may decrease the risk of long-term health problems, including hearing loss. The use of these medications is generally not recommended in babies who do not show signs of congenital CMV at birth.

All babies born with congenital CMV should have regular hearing screenings. If a baby develops hearing loss, this will allow for early diagnosis and intervention to support long-term developmental success.

Expected Outcomes

Infected infants who show signs of congenital cytomegalovirus (congenital CMV) at birth have the highest risk of developing long-term health problems. Studies suggest that approximately 50-70% will experience neurologic abnormalities such as:

  • Hearing loss
  • Vision loss
  • Intellectual disability
  • Lack of coordination
  • Abnormal muscle tone
  • Seizures

Early diagnosis of these infants is important since immediate treatment with antiviral medications may decrease the risk of health problems.

Causes

Congenital cytomegalovirus (congenital CMV) occurs when a pregnant mother becomes infected with a virus called cytomegalovirus. This virus is spread from person to person through bodily fluids such as urine, saliva, blood, tears, semen, and breastmilk.

Adults often do not experience any signs or symptoms of cytomegalovirus so a pregnant mother may not be aware that she has the condition. However, the virus can be passed to the developing baby during pregnancy. This can happen when a pregnant woman experiences a first-time infection, a reinfection with a different type of cytomegalovirus, or a reactivation of a previous infection during pregnancy. The risk of passing the virus on to the baby is lowest when the mother is infected during the first trimester (30-40%) and highest when she is infected in the third trimester (40-70%). However, the earlier in pregnancy that a baby becomes infected, the more severe the outcome. This is because the virus can cause more problems when certain parts of the body are still developing.

Support for Congenital Cytomegalovirus

Support Services

Support groups can help connect families who have a child or other family member affected with congenital cytomegalovirus with a supportive community of people who have experience and expertise in living with the condition. These organizations offer resources for families, affected individuals, health care providers, and advocates.

Accessing Care

If you are pregnant and believe that your baby is at risk for congenital cytomegalovirus, contact your doctor immediately to schedule an appointment. Work with your baby’s health care provider to determine the next steps for your baby’s care. Your doctor will be able to determine if treatment is necessary, and if so, what type of treatment will be most beneficial for your baby.

Families' Experiences

The National CMV Foundation has a webpage that features stories shared by parents who have had a child diagnosed with congenital cytomegalovirus.

References & Sources

The National Organization for Rare Disorders (NORD) offers an article about congenital cytomegalovirus for patients and families. NORD is a patient advocacy organization dedicated to people with rare diseases and the organizations that serve them.

The Genetic and Rare Diseases Information Center (GARD) offers information and resources regarding congenital cytomegalovirus. GARD is a program of the National Center for Advancing Translational Sciences (NCATS) to provide access to current, reliable, and easy to understand information about rare or genetic diseases in English or Spanish.

The Centers for Disease Control and Prevention offers an information page regarding congenital cytomegalovirus. The CDC is one of the major operating components of the Department of Health and Human Services. It fights disease and supports communities and citizens to do the same.

ACT Sheets

Healthcare professionals can learn more about confirmatory testing by reading the American College of Medical Genetics and Genomics' Algorithm for Diagnosis and ACT Sheet, a guide for follow-up after newborn screening. You can visit this page of the ACMG website here.

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