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Congenital Cytomegalovirus

  • Overview

    "Cytomegalovirus-the most common congenital viral infection-can be transmitted from a mother to a baby during pregnancy or during delivery."

    Sandra Burchett, MD, MSC, Clinical Director, Division of Infectious Diseases, Boston Children's Hospital

    You’re likely to be confused and overwhelmed—not to mention scared—if your infant has been diagnosed with congenital cytomegalovirus. But you can play an active role in helping him get better. Developing a basic understanding of the condition is a great first step as you partner with your child’s health care team to form a treatment plan.

    • Cytomegalovirus (CMV) is a virus related to the herpes virus group of infections.
    • Like herpes, it is inactive at times, but it is incurable and is a lifetime infection.
    • It’s the most common congenital viral infection.
      • About 1 in 150 children born in the United States has congenital CMV.
      • 80 percent of kids with congenital CMV never develop any symptoms or disabilities.
      • The other 20 percent can have problems related to breathing, hearing and seeing, as well as mental disabilities.

    If we find that your baby has been infected with CMV, treatment should begin right away to ensure that the condition has a minimal effect on her health.

    How Children’s Hospital Boston approaches congenital cytomegalovirus

    Here at Children’s, physicians in our Division of Infectious Diseases treats congenital cytomegalovirus in infants.

    Physicians in theDivision of Infectious Diseases care for children and adolescents with a variety of infections.

    • In addition to treating children, we also are dedicated to researching better ways to diagnose, treat and prevent infectious diseases.

    Newborn medicine

    At Children's Division of Newborn Medicine, we specialize in treating babies with a wide range of congenital and acquired conditions. Your baby will be seen by a specially trained team of physicians, nurses, therapists and other health professionals who routinely diagnose and treat newborns with critical illnesses.

    Leading the way in fetal and neonatal care

    Babies who have a congenital neurological condition need intense, specialized care. At the Fetal-Neonatal Neurology Program at Children’s, we provide comprehensive evaluation and treatment for these young children. Because newborns’ brains are in a crucial window of rapid development, we identify problems as early as possible and intervene quickly.

    How does the Children’s treat congenital cytomegalovirus?
    It’s a fairly simple process. We treat babies born with congenital CMV with a course of intravenous antiviral medication over a period of several weeks.

    • The most commonly used treatments for congenital CMV are called ganciclovir and valganciclovir.
    • Though CMV is a lifelong infection, most babies who receive this treatment won’t experience any other symptoms.
      Essential support services

      Read about general information and resources for Children’s patients and their families.

    Cytomegalovirus: Reviewed by Sandra Burchett
    © Children’s Hospital Boston; posted in 2011

    Boston Children's Hospital
    300 Longwood Avenue
    Fegan 11
    Boston MA 02115

     617-355-8994
     fax: 617-730-0279


  • In-Depth

    At Children’s Hospital Boston, we understand that you may have a lot of questions when your child is diagnosed with congenital cytomegalovirus (CMV).

    •           What exactly is it?

    •           What are potential complications in my child’s case?

    •           What are the treatments?

    •           Are there any possible side effects from treatment?

    •           How will it affect my child long term?

    We’ve tried to provide some answers to those questions here, and when you meet with our experts, we can explain your child’s condition and treatment options fully.

    Background

    According to the Centers for Disease Control and Prevention (CDC), about .6 percent of babies born in the United States are infected with cytomegalovirus. Most of these babies appear completely normal at birth, but about 20 percent of them will develop symptoms as they grow.  

    The CDC also reports that 1 to 4 percent of women first become infected with CMV during pregnancy. With a first infection during pregnancy, there is a higher risk that after birth the baby may have complications related to the virus.

    • About 10 percent of babies with congenital CMV will have signs of the infection at birth.
      • Of these, over 90 percent will have serious complications including hearing loss, visual impairment, mental retardation or epilepsy. Premature babies may be at increased risk for these problems.

    Causes

    CMV without symptoms is common in people of all ages.

    • The virus lives in saliva, urine, semen, and other body fluids.
    • It is easily spread in households and in daycare centers.
    • It can be also transmitted from an infected mother to the fetus during pregnancy.

    Symptoms

    Most (up to 90 percent) of babies born with congenital cytomegalovirus experience no immediate symptoms; however, premature birth or abnormally low birth weight are possible signs of infection.

    Some babies who appear healthy at birth may develop problems as they grow.These may include the following:

    If you know your child was born with a CMV infection, make sure to have her hearing and vision checked regularly to monitor for any problems.

    Long-term outlook

    If your child is treated early, there should be no serious consequences of CMV. However, if treatment is delayed, your child may suffer some serious health problems as a result of the infection. For more information, see the Treatment and Care tab.

    Questions to ask your doctor

    Many parents are concerned about CMV and can have lots of questions about the condition and how it can affect their baby.

    You may find it helpful to jot down questions as they arise—that way, when you talk to your doctor, you can be sure that all of your concerns are addressed.

    Here are some questions to get you started:

    • Should I get tested for CMV?
    • What can I do to prevent infection?
    • I’m infected. Is there any way to prevent passing it on to my baby?
    • What steps can we take if my baby does get infected?
    • What’s the long-term outlook for a baby with CMV?

    Prevention

    CMV is a very common infection among people of all ages. Most people who have the virus don’t show any symptoms; however, they can still pass on the infection to others.

    And while scientists are currently working to develop a vaccine to provide immunity to CMV, there is currently no vaccine and no cure for the infection. So prevention is the best treatment.

    Here are a few tips for pregnant women to help avoid becoming infected with CMV:

    • Wash your hands thoroughly and often with soap and water.
    • Avoid sharing food and drink with other people while you are pregnant.

    FAQ

    Q: What is cytomegalovirus (CMV)?

    A: CMV is a virus related to the herpes virus group of infections.

    Q: How common is CMV?

    A: According to the Centers for Disease Control and Prevention (CDC), about .6 percent of babies born in the United States are infected with cytomegalovirus. Most of these babies appear completely normal at birth, but about 20 percent of them will develop symptoms as they grow. 

    Q: Why is CMV a problem?

    A: While most people infected with CMV have no symptoms (and don’t need any treatment), babies born with congenital CMV can have problems related to breathing, hearing and seeing as well as mental disabilities.

    Q: Is there any way to prevent infection?

    A: Although an infected person may transmit the virus at any time, proper hand washing with soap and water is effective in removing the virus from the hands. It’s also best to refrain from sharing food and drink with others while you are pregnant. Research is also underway to develop a vaccine to provide immunity to CMV.

    Q: How is CMV diagnosed?

    A: Most CMV infections in the mother are not diagnosed because the virus produces few symptoms. However, the virus can be detected using the following tests:

    ·  Blood test — checking for antibodies in the mother’s bloodstream

    ·  Swab culture — taking a sample with a cotton swab from the throat of the mother or the baby
    ·  Urine test — checking the urine of the mother or the baby

    If you are pregnant and know that you’ve had CMV in the past or know that you’re currently infected, ask your doctor to perform a test.

    Q: What symptoms might my baby have?

    A: Most (up to 90 percent) of babies born with congenital cytomegalovirus experience no immediate symptoms; however, premature birth or an abnormally low birth weight are possible signs of infection.

    Some babies who appear healthy at birth may develop problems as they grow.These may include the following:

    • jaundice
    • anemia
    • lung infection
    • vision problems
    • hearing loss

    If you know your child was born with a CMV infection, make sure to have her hearing and vision checked regularly to monitor for any problems.

    Q: What are our treatment options?

    A: Here at Children’s, physicians in our Division of Infectious Diseases treats congenital cytomegalovirus in infants.

    • We treat babies born with congenital cytomegalovirus with a course of intravenous antiviral medication over a period of several weeks.
      • The most commonly used treatments for congenital cytomegalovirus are called ganciclovir and valganciclovir.

    For more information, see the Treatment and Care tab.

    Q: What is my child’s long-term outlook?

    A:If your child is treated early, there should be no serious consequences of CMV. However, if treatment is delayed, your child may suffer some serious health problems as a result of the infection.

    Q: What makes Children’s different?

    A: Our physicians are expert, compassionate and committed to focusing on the whole child, not just his condition—that’s one reason we’re frequently ranked as a top pediatric hospital in the United States.

    And at Children’s, we consider you and your child integral parts of the care team and not simply recipients of care. You and your care team will work together to customize a plan of care for your child.

    Fetal-Neonatal Neurology Program
    Learn more about our program for babies with congenital neurological conditions.
  • Tests

    The first step in treating your child is forming an accurate and complete diagnosis.

    Most CMV infections in the mother are not diagnosed because the virus produces few symptoms. However, the virus can be detected using the following tests:

    ·  Blood test — checking for antibodies in the mother’s bloodstream

    ·  Swab culture — taking a sample with a cotton swab from the throat of the mother or the baby
    ·  Urine test — checking the urine of the mother or the baby

    If you are pregnant and know that you’ve had CMV in the past or know that you’re currently infected, ask your doctor to perform a test.

    After we complete all necessary tests, Children’s Hospital Boston’s experts meet to review and discuss what they have learned. Then we will meet with you and your family to discuss the results and outline the best treatment options.

    Envisioning the “baby-to-be”
    See how Children’s uses imaging techniques to make diagnoses before birth.
  • If your child has been diagnosed with cytomegalovirus (CMV), you may be confused, frightened and overwhelmed. But you can rest assured that, at Boston Children's Hospital, your child is in good hands.

    Our physicians are expert, compassionate, and committed to focusing on the whole child, not just his condition—that's one reason we're frequently ranked as a top pediatric hospital in the United States.

    It's important to know the following about CMV: 

    If your baby is born with CMV, we'll begin treating him right away.

    • We treat babies with congenital cytomegalovirus with a course of intravenous antiviral medication over a period of several weeks.
      • The most commonly used treatments for congenital cytomegalovirus are called ganciclovir and valganciclovir.

    At Children's, we consider you and your child integral parts of the care team and not simply recipients of care. You and your care team will work together to customize a plan of care for your child.

    Prevention: The best treatment

    Because CMV is so common and easily passed from one person to another, the most effective method of treatment is prevention.

    Here are a few tips for pregnant women to help avoid becoming infected with CMV:

    • Wash your hands thoroughly and often with soap and water.
    • Avoid sharing food and drink with other people while you are pregnant.

    Coping and support

    It's essential to remember that while hearing that your child is infected with CMV can feel very isolating, many children and their families have been down this path before. We've helped them, and we can help you, too.

    There are lots of resources available for your family—within Children's, in the outside community and online. These include:

    Patient education:From the very first visit, our nurses will be on hand to walk you through your child's treatment and help answer any questions you may have. And they'll also reach out to you by phone, continuing the care and support you received while at Children's.

    Parent to parent: Want to talk with someone whose baby has been treated for CMV? We can put you in touch with other families who have been through similar experiences and can share their experience.

    Faith-based support:If you are in need of spiritual support, we'll help connect you with the Children's chaplaincy. Our program includes nearly a dozen clergy representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions who will listen to you, pray with you and help you observe your own faith practices during the time you and your child are in the hospital.

    Social work and mental health professionals: Our social workers and mental health clinicians have helped many other families in your situation. We can offer counseling and assistance with issues such as coping with your child's diagnosis, stresses relating to coping with illness and dealing with financial difficulties.

    On our For Patients and Families site, you can read all you need to know about:

    • getting to Children's
    • accommodations
    • navigating the hospital experience
    • resources that are available for your family
      Children's is on Facebook!
      Hear from our fans and become one yourself at Facebook.com/BostonChildrensHospital.
  • Research & Innovation

    Children’s Hospital Boston’s Advanced Fetal Care Program combines a tradition of excellence with innovative research.

    Researchers are currently investigating new ways to prevent in utero transmission of cytomegalovirus (CMV) with the hope that the study results will contribute to developing a maternal vaccine for CMV.

    Read more about this and other ongoing research studies.

    Community-based care for newborns

    The Community Newborn Medicine Program at Boston Children's Hospital cares for ill and convalescent newborns in a family-centered community setting. Our community-based Newborn Medicine faculty provide advanced newborn therapies in Neonatal Intensive Care Units (NICU) and in Special Care Nurseries (SCN) in several suburban medical centers that are affiliated with Children's.

    The affiliated nursery programs include:

    NICU

    SCN

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