Congenital Rubella Syndrome

What is congenital rubella syndrome?

Congenital rubella syndrome (CRS) happens when a pregnant person becomes infected with rubella (German measles) and passes it on to the fetus. “Congenital” means “present at birth.”

CRS causes a variety of issues during fetal development. These issues can affect your baby after birth, for example, causing cataracts or congenital heart disease. CRS can range in severity. It’s typically more severe if the infection happens earlier in pregnancy, especially before the 13th week of pregnancy.

How common is congenital rubella syndrome?

Congenital rubella syndrome is rare in the U.S. due to the widespread use of the rubella vaccine. But there are about 100,000 cases of CRS worldwide each year.

What are the symptoms of congenital rubella syndrome?

The symptoms (features) of congenital rubella syndrome — and their severity — can vary greatly. The earlier in pregnancy the rubella infection happens, the more likely your baby will have severe features of the syndrome. Your baby may have few or no obvious signs at birth if they have a mild form of CRS.

Initial signs of CRS right after birth may include:

• Low birth weight.
• Multiple blue or purple circle-shaped marks or bumps in their skin (often called a blueberry muffin rash).
• Purple, red or brown spots and patches on their skin (purpura).
• Small head size (microcephaly).

Other features of CRS that may become apparent later after birth include:

• Congenital cataracts and glaucoma.
• Congenital heart disease, like patent ductus arteriosus, peripheral pulmonary artery stenosis, ventricular septal defects and atrial septal defects.
• Developmental delay.
• Enlarged liver or spleen (hepatosplenomegaly).
• Hearing loss.
• Hemolytic anemia.
• Intellectual disability.
• Pneumonia.
• Meningoencephalitis.
• Pigmentary retinopathy.
• Bone disease.
• Swollen lymph nodes.

Babies born with congenital rubella syndrome also have an increased risk of developing insulin-dependent diabetes and thyroid disease later in life.

What causes congenital rubella syndrome?

Congenital rubella syndrome happens when you get rubella during pregnancy. The virus passes from you to the placenta and then on to the fetus. The virus can affect the way the fetus grows and cause congenital health issues.

Congenital health issues from CRS affect:

• Up to 85% of newborns if the rubella infection happens during the first 12 weeks of pregnancy.
• 50% of newborns if the infection happens during the first 13 to 16 weeks of pregnancy.
• 25% of newborns if the infection happens during the second half of the second trimester.

Rubella is a contagious illness you get from the RuV virus. It causes a rash that usually starts on your face and moves down your body. The U.S. eliminated rubella (meaning it’s no longer continuously spread) in 2004. But you can still get rubella in other parts of the world.

Are babies with congenital rubella syndrome contagious?

Yes. Healthcare providers consider babies with congenital rubella syndrome contagious until at least 1 year of age unless they have two negative test results for rubella one month apart after 3 months of age.

How is congenital rubella syndrome diagnosed?

There are a few ways to get a congenital rubella syndrome diagnosis:

• Pregnancy screening: Tests that screen for rubella and other infections in early pregnancy are standard in the United States. If you have symptoms that resemble rubella during pregnancy, your healthcare provider will order tests to confirm it or rule it out. They’ll then discuss the likelihood that your baby will be born with CRS.
• Fetal diagnosis during pregnancy: If you get rubella during pregnancy, your provider may recommend certain tests to see if the virus passed on to the fetus. These tests include amniocentesis, chorionic villus sampling, and fetal blood sampling.
• Diagnosis after birth: A blood test (using ELISA) can check for the presence of rubella virus antibodies in your baby after birth. Your baby’s provider may also take a sample of their pee (urine) or spit or swab the inside of their nose to check the sample for the rubella virus. Their provider may order these tests if you had a known rubella infection and/or if your baby has signs of CRS.

If your baby has rubella, their healthcare provider will likely recommend several additional tests to check their overall health and look for possible health issues related to CRS.

What is the treatment for congenital rubella syndrome?

There’s no cure or direct treatment for congenital rubella syndrome. And some of its features — like hearing loss and intellectual disability — are permanent. Other features of the syndrome are manageable or treatable, like hemolytic anemia and interstitial pneumonia.

Your baby’s healthcare team will develop a treatment plan based on your baby’s symptoms and needs.

Can I prevent congenital rubella syndrome?

You can prevent CRS by having immunity to the rubella virus via a rubella vaccine before becoming pregnant.

In the U.S., children receive a combined measles, mumps, and rubella (MMR) vaccine. They get the first dose at 12 to 15 months of age and the second dose at 4 to 6 years of age.

If you didn’t receive this vaccine as a child, talk to your healthcare provider about getting it now. If you receive the vaccine as an adult, you should wait to try for pregnancy until 28 days after getting the vaccine.

What can I expect if my baby has congenital rubella syndrome?

Congenital rubella syndrome affects each baby differently and can range in severity. It may take several assessments and tests to understand the full impact CRS has on your baby. Know that your baby’s healthcare team will be by your side to explain what CRS means for your baby’s and your family’s future.

How do I take care of my baby with congenital rubella syndrome?

Your baby may need ongoing care as they grow depending on which health issues they have from CRS. It’s important to advocate for them to ensure they get the best medical care. Advocating for care can help them have the best possible quality of life. 

A note from Cleveland Clinic

Congenital rubella syndrome can greatly affect your baby’s health. The good news is that it’s largely preventable if you have access to the rubella vaccine (typically the MMR vaccine). If possible, talk to your healthcare provider before becoming pregnant to make sure you’re protected against rubella and other infectious diseases.