Congenital Rubella Syndrome

Overview

Congenital rubella syndrome (CRS) is a group of health problems that a baby can be born with if their mother catches rubella (also called German measles) while she is pregnant. 'Congenital' means present at birth. Rubella is usually a mild illness in adults and children, but if a pregnant woman gets it, the virus can pass to her unborn baby and harm the baby's developing body, especially the eyes, ears, heart and brain.

CRS is now rare in the UK and many other countries because of routine rubella vaccination. It is still seen in parts of the world where fewer people are vaccinated. The risk is highest when rubella is caught in the first 10 to 12 weeks of pregnancy and becomes much lower after about 20 weeks.

It affects babies whose mothers were not immune to rubella (not protected by vaccination or past infection) and caught the virus during pregnancy. The mother herself may feel only mildly unwell, or may have no symptoms at all, so she may not know she was infected.

Symptoms

Common symptoms

• In the mother, rubella often causes a mild rash, swollen glands, sore joints or a low fever — or no symptoms at all.
• In the baby, hearing loss (which may be severe) is one of the most common effects.
• Eye problems such as cataracts (cloudy lenses), small eyes, or inflammation inside the eye.
• Heart problems present from birth, such as a hole or narrowing in the heart's structure.
• Being smaller than expected at birth, or growing more slowly.
• A distinctive rash or bruising-like spots on the skin at birth (sometimes called a 'blueberry muffin' rash).
• Enlarged liver or spleen, or jaundice (yellowing of the skin and eyes).

Symptoms in children

• Delayed development of sitting, walking or talking.
• Learning difficulties or problems with attention.
• Ongoing hearing loss that may affect speech and language.
• Vision problems that may worsen or need long-term eye checks.
• Feeding difficulties or slow weight gain in babies.
• Behavioural differences such as being easily overstimulated or restless.

Symptoms in older adults

• Long-standing hearing or vision problems that may need updated aids or extra support.
• Late eye problems such as glaucoma (raised pressure inside the eye), which needs regular checks.
• Heart problems that may need monitoring over the years.
• A higher chance of some conditions later in life, such as type 1 diabetes or thyroid problems, so routine health checks matter.

Causes

Main causes

• Congenital rubella syndrome is caused by the rubella virus passing from a pregnant woman's bloodstream through the placenta (the organ that feeds the baby) to the unborn baby.
• The virus interferes with the baby's normal growth and development, which is why the eyes, ears, heart and brain are most often affected.
• The earlier in pregnancy the infection happens, the greater the chance of serious effects.

Risk factors

• Not being vaccinated against rubella, or not having had it before.
• Not knowing whether you are immune (protected) before pregnancy.
• Travel to, or living in, areas where rubella is still common.
• Close contact with someone who has rubella or a rubella-like rash.
• Working in healthcare, childcare or school settings where exposure is more likely if you are not protected.

When to see a doctor

See a doctor urgently if:

• You are pregnant, not sure if you are protected against rubella, and you have a rash, fever or sore joints.
• You are pregnant and have been near someone with confirmed or suspected rubella.
• Your newborn has feeding problems, unusual sleepiness, hearing concerns or a rash.

Book a routine appointment if:

• You are planning a pregnancy and want to check whether you are protected against rubella.
• Your child has been diagnosed with CRS and you need to arrange hearing, eye or heart follow-up appointments.
• You notice any change in your child's hearing, vision, learning or behaviour, even years after birth.
• You want to catch up on any missed vaccinations for yourself or your family.

Diagnosis

In pregnancy, CRS risk is checked by blood tests that look for rubella antibodies (the body's defence markers) in the mother. After birth, doctors look at the baby's health history, examine the baby, and use a combination of tests. Some signs, such as cataracts or heart problems, may be seen on ultrasound scans during pregnancy.

Tests that may be done

• Blood tests in the mother to check for rubella antibodies, and to confirm recent infection.
• Blood tests in the baby to look for rubella antibodies made by the baby (not just passed from the mother).
• Swabs from the baby's throat or nose, or a urine sample, to look for the virus.
• A newborn hearing screening test, followed by more detailed hearing tests if needed.
• A detailed eye examination by a specialist.
• An echocardiogram (an ultrasound scan of the heart) to check for heart defects.
• Ultrasound scans during pregnancy, which may show growth problems or changes in the baby's organs.
• In some cases, a small sample of fluid from around the baby (amniocentesis) to test for the virus.

What to expect at your appointment

You may be seen by a team that includes a paediatrician (children's doctor), an eye specialist, a hearing specialist and a heart specialist. Some tests can be done on the day; others need results in a few days. Being told your baby may have CRS can feel overwhelming, so it can help to bring someone with you to appointments, write down your questions, and ask the team to explain anything you don't understand.

Treatment

There is no cure for CRS, but there is a lot that can be done to help. Treatment focuses on finding and supporting each health problem early — for example, helping a baby hear, see and grow as well as possible. Early support tends to lead to better outcomes, so regular check-ups in the first years of life matter a great deal.

Self-care at home

• Keep all follow-up appointments for hearing, eye, heart and development checks, even when your child seems well.
• Ask your child's team how to spot changes early, and write down anything you notice.
• Keep your child's vaccinations up to date, and make sure anyone caring for your child is vaccinated against rubella.
• Learn simple ways to support communication, such as facing your child when speaking and using gestures if hearing is affected.
• Look after your own wellbeing too — caring for a child with extra needs is tiring, and asking for help is a strength.

Medical treatments

Care is tailored to each child and may include help from hearing specialists (such as hearing aids or cochlear implants), eye specialists (who may recommend surgery for cataracts or treatment for eye inflammation), heart specialists (who monitor and may repair heart defects), and child development teams who provide physiotherapy, speech and language therapy and educational support. Some babies need treatment for jaundice or feeding support. Medicines may be used for specific problems such as inflammation in the eye, but these are decided by your child's specialist team — always ask them about the benefits and risks of any treatment.

When is surgery considered?

Surgery is sometimes needed — for example, to remove a cataract from the eye or to repair a heart defect. Timing depends on the individual baby and is decided by the specialist team. Hearing implants may also be considered for some children with severe hearing loss. Your team will explain the options, the timing and what to expect.

Living with this condition

Many children with CRS grow up to live full, active lives with the right support. Day to day, this may mean regular appointments, communication support at home and at nursery or school, and small adjustments such as sitting near the front of a classroom or using amplification in group settings. Setting routines and celebrating small steps helps both children and parents.

Lifestyle tips

• Build a simple routine for appointments, therapies and medicines, and keep a folder or phone note of your child's health records.
• Work closely with your child's school or nursery so they understand any hearing, vision or learning needs.
• Encourage play, friendships and hobbies — confidence and social skills matter as much as medical care.
• Make sure everyone in the household is up to date with the MMR vaccine to protect others who may be vulnerable.
• Plan for transitions, such as starting school or moving to adult services, well in advance.

Diet and exercise

There is no special diet for CRS. A balanced, varied diet and plenty of opportunities for active play support general health and growth. If your child has feeding difficulties or slow growth, ask your health visitor or dietitian for advice. Regular physical activity suited to your child's abilities helps fitness, mood and confidence.

Mental health and emotional wellbeing

Parents often feel shock, worry or guilt when their child is diagnosed, even though nothing they did caused the infection on purpose. These feelings are normal and can ease with time and support. Children and young people with CRS may feel different from their peers or find school stressful, and may benefit from talking to someone. If you or your child feel low, anxious or overwhelmed, tell your doctor — mental health support is available. If you ever have thoughts of harming yourself, contact your local emergency number or a crisis line straight away.

Prevention

Yes. CRS can be prevented by making sure women are protected against rubella before they become pregnant. The protection comes from vaccination, which is safe and highly effective. Because the virus can pass to the baby at any stage, being protected before pregnancy is far better than trying to protect during it.

Vaccines

The MMR vaccine protects against measles, mumps and rubella. Two doses are offered in childhood in the UK and many other countries. If you are an adult who has not had two doses, or you are not sure, you can catch up before pregnancy. The MMR vaccine is not given during pregnancy, so it is usually advised to have it at least one month before trying to conceive. Live vaccines like MMR are not recommended in pregnancy, which is why planning ahead matters.

Screening programmes

If you are planning a pregnancy, your doctor can arrange a simple blood test to check whether you are protected against rubella. In the UK this is often checked early in pregnancy or at a pre-pregnancy review. If you are not protected, you can be vaccinated before your next pregnancy.

Complications

If left untreated

• Permanent hearing loss, which can affect speech and language development if not supported early.
• Vision loss from cataracts, glaucoma or eye inflammation.
• Heart defects that may cause tiredness, poor feeding or, in serious cases, heart failure.
• Developmental delay and learning difficulties.
• Growth problems and, rarely, liver or bleeding problems in newborns.
• A higher chance of type 1 diabetes or thyroid problems in later life.

Long-term outlook

With early identification and the right support, many children with CRS do well. Hearing aids, cochlear implants, eye and heart surgery, and educational support can make a big difference. Regular follow-up helps catch problems early, when they are easiest to manage. Every child's path is different, and your specialist team can give you a realistic picture of what to expect for your child.

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