What is Congenital Zika Syndrome?

Congenital Zika syndrome is a group of birth defects associated with Zika infection during pregnancy. If you get infected with the Zika virus during pregnancy, you can pass it to your baby. Being infected with Zika before birth increases a baby’s risk for birth defects, but not all babies infected have them. A birth defect is a health condition that is present at birth. Birth defects change the shape or function of one or more parts of the body. They can cause problems in overall health, in how the body develops or in how the body works.

Researchers are trying to find out more about babies who are infected or who may have been infected with Zika before birth. This research helps us learn how Zika may affect a baby’s health and development at birth and later in life. This is why it’s important for these babies to get early and regular medical care.

Which birth defects are part of congenital Zika syndrome?

Congenital Zika syndrome includes these five birth defects:

  1. Severe microcephaly with a partly collapsed skull. Microcephaly is a birth defect in which a baby’s head is smaller than expected, compared to babies of the same sex and age.

  2. Less brain tissue than normal, with a specific pattern of brain damage that includes calcium deposits in the deep tissues of the brain. This calcium can build up and affect the way a baby’s brain works.

  3. Damage to the back of the eye, including macular scarring. The retina is the nerve tissue that lines the back of the eye. It senses light and sends images to your brain. The center of the retina is called the macula. The macula gives the sharp, central vision you need for reading, driving and seeing fine detail. Macular scarring happens when scar tissue forms on the macula.

  4. Problems with limbs or joints, including birth defects like arthrogryposis, club foot and congenital hip dysplasia. A joint is a part of the body where two or more bones come together, like the knee, hip, elbow or shoulder. A baby with arthrogryposis has joint problems that make it hard for her to move her hands or legs. If a baby has clubfoot, one foot or both feet point down and turn in. Babies born with hip dysplasia have an abnormal hip joint where the top of a hip bone doesn't stay firmly in the hip socket.

  5. Hypertonia that limits a baby’s movement after birth. Hypertonia is when your baby has too much muscle tone, so his hands or legs may be stiff and hard to move.

How do you know if your baby has congenital Zika syndrome?

Your baby should get tested for Zika infection and health conditions that are part of congenital Zika syndrome if:

* Your baby has birth defects that are part of congenital Zika syndrome and you may have been exposed to Zika during pregnancy.

* Your baby doesn’t have birth defects that are part of congenital Zika syndrome, but lab tests show you possibly had Zika infection during pregnancy.

If you may have been exposed to Zika during pregnancy, but lab tests don’t show possible Zika infection and your baby doesn’t have birth defects that are part of congenital Zika syndrome, talk to your baby’s provider to decide if testing is right for your baby. Even if your baby looks and seems healthy at birth, he may have effects of congenital Zika syndrome as he gets older. So it’s important that you take him to all his medical checkups so his providers can make sure he’s doing well. Checkups also let providers spot and treat conditions early to help prevent health problems later on. Tell your provider if you’re worried about your baby’s health and development.

Do babies with congenital Zika syndrome need special medical care?
Yes, babies with congenital Zika syndrome need care from a team of health care providers and get extra medical tests and checkups. The kind of checkups and medical care your baby needs depend on his condition at birth.

Zika Care Connect is a website that offers up-to-date information about caring for babies and children who have been exposed to Zika and may have congenital Zika syndrome. It also offers a database of providers who care for these babies and children. You can search the database by things like location, kind of provider, the language the provider speaks and the insurance the provider takes. Use Zika Care Connect to find the right providers to take care of your baby.

Learn more about congenital zika syndrome.