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Congenital Rubella | Overview

You’re likely to be confused and overwhelmed — not to mention scared — if your infant has been diagnosed with congenital rubella 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 rubella syndrome is caused by a virus known as a rubivirus. When adults and children contract the disease, it is known as rubella, or German measles.
  • If a pregnant woman contracts rubella during her first trimester, there is a very good chance that she will pass it on to her fetus. There is also a chance that the infection will result in a miscarriage.
  • Pregnant women who have been exposed to rubella need to seek medical attention immediately.
  • The good news is that rubella is very uncommon now that children are vaccinated for the disease.
  • Only 30 to 60 cases of rubella are documented each year in the United States. Fewer than five infants each year are diagnosed with congenital rubella syndrome.
  • The rubivirus does the most damage to a developing fetus during the first trimester. After the fourth month, the mother's rubella infection is less likely to harm the fetus.
  • Babies who are born with congenital rubella syndrome may have severe birth defects.

How Children’s Hospital Boston approaches congenital rubella 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 rubella syndrome?

Because congenital rubella syndrome is a viral infection, there is no cure. If your baby is born with congenital rubella syndrome, specific symptoms of the disease can be treated accordingly.

  • Because there is no cure for congenital rubella syndrome, the best treatment is prevention. Women who are planning on becoming pregnant should be vaccinated at least 28 days beforehand. Because the vaccine is a live virus, women who are pregnant should not be vaccinated.

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.

Congenital HIV: Reviewed by Sandra Burchett, MD, MSc, Clinical Director, Children’s Hospital Boston Division of Infectious Diseases

Congenital Rubella | Symptoms and Causes

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 rubivirus infection in the uterus when the mother catches rubella 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 rubivirus remains in the body, and can lead to congenital rubella syndrome, which may damage the child's developing organs, especially during the first trimester.

Causes

A woman who gets rubella during her pregnancy can pass it on to her unborn child, causing the syndrome.

The rubivirus does the most damage to a developing fetus during the first trimester. After the fourth month, the mother's rubella infection is less likely to harm the fetus.

  • If you’re planning on becoming pregnant, ask your doctor for the MMR (measles, mumps, rubella) vaccine at least 28 days beforehand. Because the vaccine is a live virus, women who are pregnant should not be vaccinated.

How is rubella spread?

Rubella spreads through direct contact with discharge from the nose and throat.

  • The rubivirus that causes rubella can also be spread from a pregnant mother to her fetus through the bloodstream.

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

Most adults and children have already been vaccinated against rubella, so the risk of a baby being born with congenital rubella syndrome is extraordinarily low.

  • Fewer than five infants each year are diagnosed with congenital rubella syndrome.

Symptoms

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

Long-term outlook

The long-term outlook for a child born with congenital rubella syndrome depends on the severity of the birth defects. If your baby has problems with his heart, they can often be corrected, while nervous system damage can often be irreversible.

Because there is no cure for congenital rubella syndrome, it’s important to prevent it. If you’re planning on becoming pregnant, ask your doctor for the MMR (measles, mumps, rubella) vaccine at least 28 days beforehand.

If your baby is born with congenital rubella syndrome, specific symptoms of the disease can be treated accordingly.

Prevention

Because there is no cure for congenital rubella syndrome, it’s important to prevent it. If you’re planning on becoming pregnant, ask your doctor for the MMR (measles, mumps, rubella) vaccine at least 28 days beforehand.

  • If you are already pregnant, DO NOT get the rubella vaccine, as it contains a live version of the virus. 

FAQ

Q: What is congenital rubella syndrome?

A: A baby can be born with birth defects as a result of congenital rubella syndrome if a mother infected with rubella passes the rubivirus to her fetus.  

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

  • Babies born with congenital rubella syndrome may have severe birth defects.

Q: What are the chances my baby will be born with congenital rubella syndrome?
A:
The good news is that rubella is very uncommon now that children are vaccinated for the disease.

  • Only 30 to 60 cases of rubella are documented each year in the United States. Fewer than five infants each year are diagnosed with congenital rubella syndrome.

Q: How can congenital rubella syndrome be prevented?

A: If you’re planning on becoming pregnant, ask your doctor for the MMR (measles, mumps, rubella) vaccine at least 28 days beforehand.

  • If you are already pregnant, DO NOT get the rubella vaccine, as it contains a live version of the virus.

Q: How is congenital rubella syndrome diagnosed?

A: If your child is born with symptoms consistent with congenital rubella syndrome, a simple blood test can test for the presence of the virus in the bloodstream.

Q: What symptoms might my baby have?
A:
Babies born with congenital rubella syndrome may have some or all of the following symptoms:

Q: What are our treatment options?

A: Because there is no cure for congenital rubella syndrome, Children’s specialists treat specific symptoms of the disease — such as problems with the heart, eyes and nervous system.

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

A:The long-term outlook for a child born with congenital rubella syndrome depends on the severity of the birth defects. If your baby has problems with his heart, they can often be corrected, while nervous system damage can often be irreversible.

Because there is no cure for congenital rubella syndrome, it’s important to prevent it. If you’re planning on becoming pregnant, ask your doctor for the MMR (measles, mumps, rubella) vaccine at least 28 days beforehand.

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 Rubella | Diagnosis and Treatments

How we diagnose congenital rubella

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

  • For the mother: The skin lesions caused by rubella are unique, so usually a physician can make a diagnosis through a physical examination. Your doctor may also order blood or urine tests to confirm the diagnosis.
  • For the baby: If your child is born with congenital rubella syndrome, a simple blood test can test for the presence of the virus in the bloodstream. 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 Boston Children's treats congenital rubella

If your child has been diagnosed with congenital rubella syndrome, 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 rubella syndrome:

  • Because there is no cure for rubella syndrome, our specialists can treat specific symptoms of the disease — such as problems with the heart, eyes, and nervous system.

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

If you're planning on becoming pregnant, ask your doctor for the MMR (measles, mumps, rubella) vaccine at least 28 days beforehand.

  • If you are already pregnant, DO NOT get the rubella vaccine, as it contains a live version of the virus.

Coping and support

It's essential to remember that while hearing that your child is infected with congenital rubella 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 Boston 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 Boston Children's.

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

Faith-based support: The Boston Children’s chaplaincy is a source of spiritual support for parents and family members. Our program includes nearly a dozen clergy members — 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 your child’s treatment.

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 site, you can read all you need to know about:

  • getting to Boston Children's Hospital
  • accommodations
  • navigating the hospital experience
  • resources that are available for your family

Congenital Rubella | Research and Clinical Trials

Research in Children’s Hospital Boston’s Division of Infectious Diseases includes both basic investigation and clinical research.

Our research has the broad objective of learning more about how diseases develop and spread as well as how the body uses its defenses to fight back. 

Investigators target viruses, bacteria and fungi that cause disease in community-wide infections in the United States, in infections of children with compromised immune systems and in global public health.

Read more about these ongoing research studies.

Community-based care for newborns

The Community Newborn Medicine Program at Children's 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

Congenital Rubella | Programs & Services