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What is congenital rubella?

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.

Rubella is very uncommon now that children are vaccinated for the disease. Only 30 to 60 cases of 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. The developing fetus is especially vulnerable to illness because its immune system is not yet strong enough to permanently fight off infection. 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.

Symptoms & Causes

What are the symptoms of congenital rubella?

What causes congenital rubella?

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.

Diagnosis & 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 detect 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.

How we approach 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.

What is the long-term outlook for my child?

This 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.

Leading the way in fetal and neonatal care

Babies who have a congenital neurological condition need intense, specialized care. At our Fetal-Neonatal Neurology Program, 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.

Newborn medicine

At 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.

Community-based care for newborns

Our Community Newborn Medicine Program 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

  • Caritas St. Elizabeth's Medical Center
  • South Shore Hospital

SCN

  • Beverly Hospital
  • Caritas Good Samaritan Medical Center
  • Caritas Holy Family Hospital
  • Winchester Hospital

Coping & 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 Department of Spiritual Care 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:

Research & Clinical Trials

Research in our 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.