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You’re likely to be confused and overwhelmed — not to mention scared — if your infant has been diagnosed with congenital varicella syndrome. 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.

  • Congenital varicella syndrome is caused by the same virus (varicella) as the chicken pox, a common childhood disease.
  • The risk of a mom passing the varicella virus onto her baby is extremely low. Only a primary varicella infection can cause the condition, and most adults and children have already had chicken pox or have been vaccinated against it.
  • Even if a mother does contract chicken pox while pregnant, there is only a 2 percent chance that the baby will develop congenital varicella syndrome.
  • Babies who are born with congenital varicella syndrome may have birth defects that affect various parts of their bodies.

How Boston Children’s Hospital approaches congenital varicella syndrome

Our Division of Infectious Diseases treats congenital varicella syndrome in infants.

Physicians in the Division 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.

How does Children’s treat congenital varicella syndrome?

If we find that your baby has been born with congenital varicella syndrome, we will begin treatment immediately with Varicella-zoster immune globin (the vaccine for chicken pox) to ensure that the condition has a minimal effect on her health.

  • However, the best treatment is prevention, so if you are pregnant and think you may have been exposed to chicken pox, tell your doctor right away.

Newborn medicine

Our 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.

Congenital Varicella | Symptoms & Causes

We understand that you may have a lot of questions when your child is diagnosed with congenital varicella syndrome, such as:

  • What exactly is it?
  • How did he get 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

A baby may contract a varicella infection in the uterus when the mother catches chicken pox and carries it through her bloodstream to the baby.

  • The developing fetus is especially vulnerable to illness because its immune system is not yet strong enough to permanently fight off infection.

Since a baby in utero cannot completely get rid of an infection, the varicella virus remains in the body, and can lead to congenital varicella syndrome, which may prevent the child's vulnerable organs from developing correctly.

What causes varicella?

A woman who gets varicella (chicken pox) for the first time during her pregnancy can pass it on to her unborn child, causing the syndrome.

  • If you’re pregnant and haven’t ever had chicken pox, be very careful because varicella is highly contagious — there is a 90 percent chance that an infected person will spread the disease to a household member who has not had chicken pox before.

How is chicken pox spread?

For adults and children, varicella is spread through direct skin contact with the chicken pox rash or through the droplets in the air.

  • Varicella can also be spread from a pregnant mother to her fetus through the bloodstream.

What is the likelihood that my baby will get congenital varicella syndrome?

Most adults and children have already had chicken pox or been vaccinated against it, so the risk of a mother passing the varicella virus on to her baby is very low.

  • Even if a mother does contract chicken pox while pregnant, there is only a 2 percent chance that the baby will develop congenital varicella syndrome.

What are the symptoms of congenital varicella syndrome?

Babies born with congenital varicella syndrome may have may have some or all of the following symptoms:

  • skin (mostly on arms and legs)
    • thickened, overgrown scar tissue
    • hardened, red and inflamed skin
       
  • limbs
    • limb atrophy — limb deficiencies, malformations and underdevelopment
       
  • autonomic nervous system — controls involuntary functions
     
  • brain
    • ventriculomegaly — enlarged ventricles of the brain
    • cortical atrophy — degeneration of outer portion of brain
       
  • growth
  • eyes
    • cataracts — clouding over the lens of the eye
    • abnormally small eye(s)
    • rapid, involuntary eye movement
    • chorioretinitis — inflammation of the choroids layer behind the retin
       
  • psychomotor skills — motor movements caused by mental process
     
  • learning disabilities
     
  • intellectual disabilities

Long-term outlook

It’s important to identify early if your child is at risk for developing congenital varicella syndrome. Pregnant women who contract chicken pox will be monitored by ultrasound to see if the virus is affecting the fetus.

If your baby is born with congenital varicella syndrome, specific symptoms of the disease can be treated accordingly. For more information, see the Treatment and Care tab.

Questions to ask your doctor

If you’re pregnant and at risk for contracting chicken pox, you may have lots of questions about congenital varicella syndrome and how it can affect your 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:

  • I’ve never had chicken pox; should I get vaccinated?
  • How can I avoid exposure to chicken pox?
  • What can I do to prevent infection if I’m exposed?
  • I’ve got chicken pox. 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 born with congenital varicella syndrome?

Prevention

You don’t have to worry about congenital varicella syndrome at all if you have already had chicken pox or been vaccinated against it.

However, if you are pregnant and have not had chicken pox before, the following steps can help prevent congenital varicella syndrome:

  • Avoid contact with anybody who has chicken pox.
  • Susceptible people who are living with a pregnant woman should get the varicella vaccine.
  • If you are already pregnant, DO NOT get the varicella vaccine, as it contains a live version of the virus. Get vaccinated at least a month before your pregnancy or after giving birth.

FAQ

Q: What is congenital varicella syndrome?

A: A baby can be born with congenital varicella syndrome if a mother infected with chicken pox passes the varicella virus to her fetus.  

Q: Why is congenital varicella syndrome a problem?
A:
Varicella can be spread from a pregnant mother to her fetus through the bloodstream.

  • Babies born with congenital varicella syndromemay have birth defects.

Q: Is there any way to prevent infection?

A: You don’t have to worry about congenital varicella syndrome at all if you have already had chicken pox or been vaccinated against it.

However, if you are pregnant and have not had chicken pox before, the following steps can help prevent congenital varicella syndrome:

  • Avoid contact with anybody who has chicken pox.
  • Susceptible people who are living with a pregnant woman should get the varicella vaccine.
  • If you are already pregnant, DO NOT get the varicella vaccine, as it contains a live version of the virus. Get vaccinated at least a month before your pregnancy or after giving birth.

Q: How is congenital varicella syndrome diagnosed?

A: If you contract chicken pox during your pregnancy, fetal ultrasounds can monitor your baby to determine if varicella affects its development.

Q: What symptoms might my baby have?

A: Babies born with congenital varicella syndromemay have birth defects that affect the following parts of their bodies:

  • skin(mostly on arms and legs)
    • thickened, overgrown scar tissue
    • hardened, red and inflamed skin
       
  • limbs
    • limb atrophy — limb deficiencies, malformations and underdevelopmen
       
  • autonomic nervous system — controls involuntary functions
     
  • brain
    • ventriculomegaly — enlarged ventricles of the brain
    • cortical atrophy — degeneration of outer portion of brai
       
  • growth
  • eyes
    • cataracts — clouding over the lens of the eye
    • abnormally small eye(s)
    • rapid, involuntary eye movement
    • chorioretinitis — inflammation of the choroids layer behind the retin
       
  • psychomotor skills — motor movements caused by mental process
     
  • learning disabilities
     
  • intellectual disabilities

Q: What are our treatment options?

A: Our Division of Infectious Diseases treats congenital varicella syndrome in infants.

If your baby is born with congenital varicella syndrome, we’ll administer Varicella-zoster immune globin (VZIG) immediately after birth, in order to lessen the severity of the disease.

For more information, see the Treatment and Care [LINK] tab.

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

A:It’s important to identify early if your child is at risk for developing congenital varicella syndrome. Pregnant women who contract chicken pox will be monitored by ultrasound to see if the virus is affecting the fetus.

If your baby is born with congenital varicella syndrome, specific symptoms of the disease can be treated accordingly. For more information, see the Treatment and Care tab.

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.

Physicians and researchers in our Division of Infectious Diseases are constantly learning more about how diseases develop and spread as well as how the body uses its defenses to fight back. 

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.

Congenital Varicella | Diagnosis & Treatments

How we diagnose congenital varicella

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

  • If you contract chicken pox during your pregnancy, fetal ultrasounds can monitor your baby to determine if varicella affects its development.

After we complete all necessary tests, our 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.

How we treat convenital varicella

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 congenital varicella syndrome:

  • If your baby is born with varicella syndrome, we'll administer Varicella-zoster immune globin (VZIG) immediately after birth, in order to lessen the severity of the disease.

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

You don't have to worry about congenital varicella syndrome at all if you have already had chickenpox or been vaccinated against it.

However, if you are pregnant and have not had chickenpox before, the following steps can help prevent varicella syndrome:

  • Avoid contact with anybody who has chickenpox.
  • Susceptible people who are living with a pregnant woman should get the varicella vaccine.
  • If you are already pregnant, DO NOT get the varicella vaccine, as it contains a live version of the virus. Get vaccinated at least a month before your pregnancy or after giving birth.

Pregnant women who contract varicella during pregnancy often have a more severe case of the disease than women who are not pregnant. Severe varicella may be treated with an antiviral medication given through an IV.

Coping & Support

Coping and support

It's essential to remember that while hearing that your child is infected with congenital varicella syndrome 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 congenital varicella syndrome? 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 Department of Spiritual Care (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 patient resources pages, you can read all you need to know about:

Congenital Varicella | Programs & Services