Congenital rubella syndrome

At Children’s Hospital Boston, we understand that you may have a lot of questions when your child is diagnosed with congenital rubella syndrome, such as:

•           What exactly is it?

•           How did he get it?

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

•           Is there any treatment for the syndrome?

•           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 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:

• Heart problems
• Eye problems, including cataracts and glaucoma
• Intellectual disabilities
• Growth retardation
• Low birth weight
• Developmental delays
• Learning disabilities
• Deafness
• Diabetes
• Enlarged liver and spleen
• Skin lesions
• Bleeding

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.

Questions to ask your doctor

Many parents are concerned about congenital rubella syndrome 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:

• I’ve never had rubella; should I get vaccinated?
• How can I avoid exposure to rubella?
• What can I do to prevent infection if I’m exposed?
• Is there any way to prevent passing rubella 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 rubella syndrome?

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:

• Heart problems
• Eye problems, including cataracts and glaucoma
• Intellectual disabilities
• Growth retardation
• Low birth weight
• Developmental delays
• Learning disabilities
• Deafness
• Diabetes
• Enlarged liver and spleen
• Skin lesions
• Bleeding

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.

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