Congenital Zika syndrome

KEY POINTS

  • Congenital Zika syndrome is a group of health conditions present at birth associated with Zika infection during pregnancy.

  • Congenital Zika syndrome includes birth defects (like microcephaly) and other health and development problems.

  • Babies with congenital Zika syndrome need special medical care from a team of health care providers and other specialists.

  • The best way to protect your baby from congenital Zika syndrome is to protect yourself from Zika infection before and during pregnancy.

What is congenital Zika syndrome?

Congenital Zika syndrome is a group of health conditions present at birth associated with Zika infection during pregnancy. Zika is a virus. If you get infected with Zika during pregnancy, the virus can pass through the placenta to your baby. The placenta grows in your uterus (womb) and supplies your baby with food and oxygen through the umbilical cord. 

About 1 in 10 pregnant women (10 percent) with Zika infection in the United States and the District of Columbia has a baby with birth defects. 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. Pregnant women with Zika infection during the first trimester may be more likely to have a baby with birth defects than women infected later in pregnancy. 

If the Zika virus reaches your baby’s brain, it can slow brain growth and kill brain cells, and some parts of the brain may not develop. Problems in the brain that are part of congenital Zika syndrome include: 

  • Microcephaly. This is a birth defect in which a baby’s head is smaller than expected, compared to babies of the same sex and age. Babies with mild microcephaly often don’t have problems other than small head size. A baby with severe microcephaly has a head that’s much smaller than expected and may have more serious health problems than a baby with mild microcephaly.
  • Neural tube defects (also called NTDs). An NTD is a birth defect in a baby’s neural tube. The neural tube is part of a developing baby that becomes the brain and spine. Examples of NTDs are spina bifida and anencephaly.
  • Calcium deposits. Calcium can build up in your baby’s brain tissue and affect the way his brain works. 
  • Enlarged ventricles and hydrocephalus. Ventricles are spaces in the brain that fill with fluid. When fluid builds up, it causes pressure on the brain. This is called hydrocephalus. 
  • Fetal brain disruption sequence. Babies with this condition may have severe microcephaly, problems with the skull (including collapsed skull or skull bones that overlap), extra skin on the scalp and problems with the nervous system. Your baby’s nervous system is made up of the brain, spinal cord and nerves. The nervous system helps your baby move, think and feel.
  • Smooth brain. A healthy brain has many folds and grooves in it. For some babies, the brain may be smooth with no folds or few folds. Some babies with smooth brain don’t have serious health problems, but others stop developing after 3 to 5 months and many die before they're 2 years old.

Other health conditions that are part of congenital Zika syndrome include:

  • Low birthweight. This is when a baby is born weighing less than 5 pounds, 8 ounces. 
  • Growth and development problems, including trouble swallowing, problems with balance and movement, and intellectual and developmental disabilities. These are problems with how the brain works that can cause a person to have trouble or delays in physical development, learning, communicating, taking care of himself or getting along with others.
  • Hearing loss and other hearing problems. Hearing loss is when your baby can’t hear sound in one or both ears. 
  • Nervous system problems, including epilepsy, hypertonia, hypotonia, and severe fussiness. Epilepsy is a seizure disorder that affects how the nerve cells in your brain work. A seizure is when the whole body or parts of the body move without control. Hypertonia is when your baby has too much muscle tone, so his hands or legs may be stiff and hard to move. Hypotonia is when your baby has too little muscle tone, so he may seem floppy and have poor head control (his head falls forward, backward or to the side).
  • Problems with limbs or joints, including birth defects like arthrogryposis, clubfoot 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 is born with joint problems that make it hard for her to move her hands or legs. Her joints may not move the right way or they may get stuck in one position. If a baby has clubfoot, one foot or both feet point down and turn in. Babies with clubfoot also may have abnormal foot bones, ankle joints and muscles. 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.
  • Vision problems. These include damage to the retina, torpedo maculopathy and optic nerve hypoplasia (also called ONH). The retina is the nerve tissue that lines the back of the eye. Torpedo maculopathy is when your baby has an oval-shaped scar (also called a lesion) in the central part of the retina. Babies with ONH are born with an optic nerve that hasn’t developed properly. The optic nerve connects the retina to the brain. 

How can you prevent congenital Zika syndrome in your baby?

You can prevent congenital Zika syndrome in your baby by not getting infected with Zika before or during pregnancy. The Zika virus is spread mostly through infected mosquitoes. You also can get it by having unprotected sex with an infected person or by coming into contact with infected body fluids, like through a blood transfusion or if you work in a health care setting. Learn how to protect yourself from Zika infection to prevent congenital Zika syndrome in your baby. 

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

Not all babies are checked for congenital Zika syndrome after birth. Your baby gets tested for Zika infection and health conditions that are part of congenital Zika syndrome if:

  • You tested positive for Zika infection during pregnancy. 
  • You may have been exposed to Zika during pregnancy and your baby has conditions that are part of congenital Zika syndrome.
  • You may have been exposed to Zika within 2 weeks of giving birth and your baby has signs or symptoms of Zika infection after birth, like a fever, rash or pink eye.

If you may have been exposed to Zika during pregnancy but you didn’t get tested or you got tested more than 12 weeks after your exposure, your baby’s health care provider may test him for Zika and check for signs of congenital Zika syndrome after birth.

Your baby’s health care provider uses these tests to check for Zika infection and for health conditions that are part of congenital Zika syndrome:

  • A blood and urine test for Zika. Your baby gets tested within 2 days of birth. If your baby’s spinal fluid is being tested, it also may be tested for Zika.
  • A physical exam to check your baby’s head size, weight and length
  • Ultrasound of the head to check your baby’s skull and brain. An ultrasound uses sound waves and a computer screen to show a picture of the inside of your baby's body.
  • Tests to check for problems with your baby’s nervous system 
  • A hearing test as part of newborn screening. Your baby gets newborn screening before she leaves the hospital after birth. Newborn screening checks for serious but rare conditions that your baby has at birth. It includes blood, hearing and heart screening.

If your baby’s born with Zika, does he need special medical care? 

Yes. If your baby is born with Zika, a team of health care providers checks your baby for conditions that are part of congenital Zika syndrome. Your baby’s regular health care provider may be the leader of the team. The kind of checkups and medical care your baby needs depend on his condition at birth. 

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.

If your baby has Zika and is born with health conditions that are part of congenital Zika syndrome, he gets tests before he leaves the hospital to check his overall health. If your baby doesn’t get these tests before he leaves the hospital, he needs them before he’s 1 month old. The tests include:

  • Blood tests, like a complete blood count (also called CBC) and to check for hypothyroidism. A CBC checks for many different health conditions, including anemia and infections. Anemia is when your baby doesn’t have enough healthy red blood cells to carry oxygen to the rest of his body. Hypothyroidism is when the thyroid gland doesn’t make enough thyroid hormones. The thyroid gland is butterfly-shaped gland in your neck. Thyroid hormones help your baby’s bones and nerves develop. Your baby also gets a blood test to make sure his liver is working properly.
  • An eye exam
  • A hearing test called auditory brainstem response (also called ABR). This test uses patches called electrodes and a computer to check how your baby’s nerves in the brain react to sounds.

After your baby leaves the hospital, his provider closely monitors your baby’s health, growth and development at monthly checkups for at least 6 months. During this time, your baby gets these tests to check on growth and development:

  • At 2 weeks, your baby gets another test for hypothyroidism. 
  • At 1 month and 2 months, your baby gets a test to check his nervous system.
  • At 3 months, your baby gets another eye exam and another test for hypothyroidism. 
  • At 4 to 6 months, your baby gets another ABR to check his hearing.

If your baby has Zika, but isn’t born with health conditions that are part of congenital Zika syndrome, he gets regular well-baby checkups in the first year of life. At these checkups, his provider closely checks your baby’s growth and development, and your baby gets these tests: 

  • At 2 weeks, your baby gets an eye exam and an ABR. 
  • At 4 to 6 months, your baby may get another ABR.
  • At 9 months, if he didn’t get an ABR at 4 to 6 months, he may get a different hearing test called a behavioral hearing test. This hearing test checks how your baby reacts to sound. 

If your baby has congenital Zika syndrome, what health care providers may be on your baby’s health care team?  

If your baby has congenital Zika syndrome, she gets care from a team of health care providers. These providers know how to treat health conditions that come with congenital Zika syndrome. They work together to coordinate your baby’s care to make sure she gets regular medical checkups as she grows, as well as treatment she needs for conditions that come with congenital Zika syndrome. Depending on your baby’s condition, she may need long-term treatment.

Zika Care Connect is a website that offers up-to-date information about caring for babies and children with 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.

Your baby’s health care team is led by the provider who gives your baby general medical care. If your baby has congenital Zika syndrome, this provider may be a: 

  • Pediatrician. This is a doctor who has training to take care of babies and children.
  • Family practice doctor (also called a family physician). This is a doctor who takes care of every member of the family. A family practice doctor can be your health care provider before, during and after pregnancy, and your baby's provider, too.
  • Neonatologist. This is a doctor who takes care of sick newborns, including premature babies (babies born before 37 weeks of pregnancy) and babies with birth defects. 
  • Pediatric nurse practitioner (also called PNP). This is a registered nurse who has advanced training to take care of babies and children. 
  • Family nurse practitioner (also called FNP). This is a registered nurse with advanced training to take care of every member of your family. 

Providers who treat problems with digestion and feeding

  • Gastroenterologist. This doctor treats digestion and feeding problems. Digestion is the process of how your baby’s body breaks down food after she eats. 
  • Lactation consultant. This person is trained to help women breastfeed, even women who have breastfeeding problems. 
  • Nutritionist. This person can help make sure your baby gets all the nutrients she needs for healthy growth and development. 
  • Pulmonologist. This doctor treats lung conditions, like aspiration. Aspiration is when your baby sucks food or drink into her airway.
  • Otolaryngologist (also called an ear, nose and throat specialist or ENT). This doctor may treat your baby if she has feeding problems, like poor suck, trouble swallowing, reflux or aspiration. Reflux is when the milk or food your baby swallows comes back up into her esophagus. The esophagus is the tube that carries food and drink from your baby’s mouth to her stomach. 

Providers who treat problems with the eyes and ears

  • Audiologist. This provider has training to treat hearing problems and hearing loss.
  • Ophthalmologist. This is a doctor who treats eye problems.
  • ENT. This doctor treats problems of the ears, nose and throat.

Providers who treat problems with the brain, nerves, spine, bones and joints

  • Endocrinologist. This doctor treats gland or hormone problems. A gland is an organ that makes hormones (chemicals) that help your baby’s body work. Babies with brain development problems may have problems with their glands and hormones. 
  • Neurologist. This doctor treats brain, spine and nerve problems.
  • Orthopedist. This doctor treats bone and joint problems. 
  • Physiatrist. This doctor treats health conditions that affect the brain, nerves, bones and muscles. He also has special training in treating patients with disabilities. 
  • Radiologist. This doctor uses imaging tests to diagnose and treat disease, like microcephaly and other problems. Imaging tests include ultrasound and magnetic resonance imaging (also called MRI). MRI is a medical test that makes a detailed picture of the inside of your baby. 

Providers who treat developmental conditions

  • Developmental pediatrician. This doctor has training in child development and taking care of children with special needs. If your baby has developmental delays, he may need to see a developmental pediatrician. Developmental delays are when your child doesn’t reach developmental milestones when expected. Milestones are skills or activities that most children can do at a certain age. Milestones include sitting, walking, talking, having social skills and having thinking skills. 
  • Occupational therapist. This person trained to help people learn to do everyday activities. For children, this may be things like brushing teeth, getting dressed, putting on shoes or learning to use a pencil. If your baby has feeding problems, she may need treatment from an occupational therapist.
  • Physical therapist. This provider creates exercise programs to help build strength and help with movement. If your baby has a condition like hypertonia, clubfoot or arthrogryposis, physical therapy may help these conditions. 
  • Speech therapist. This provider helps people with speech and language problems. A speech therapist also may help your baby if she has feeding problems.

Other providers who treat conditions caused by congenital Zika syndrome 

  • Infectious disease specialist. This doctor diagnoses and treats infections. He checks your baby for infections that may cause problems for your baby, including syphilis, toxoplasmosis, rubella, cytomegalovirus and herpes.
  • Clinical geneticist. This doctor tries to find out the causes of birth defects and other genetic conditions (health conditions caused by genes). If your baby has microcephaly, a clinical geneticist may check to see if it’s caused by something other than Zika infection. 

Providers who help families take care of a sick baby and cope with the stress of having a sick baby

  • Mental health professional. This provider helps people with emotional or mental health problems, like depression. She can help people cope with the stress of caring for a baby with health conditions that come with congenital Zika syndrome. Mental health providers include social workers, therapists, counselors, psychologists, psychiatrists and psychiatric nurse practitioners.
  • Social worker. A social worker help people solve problems and make their lives better. Most hospitals have social workers who can help connect you with the resources you need to care for your baby.

If your baby has developmental delays, does she need early intervention services?

Yes. If your baby has developmental delays, it’s important to get early intervention services as soon as possible. Developmental delays are when your child doesn’t reach developmental milestones when expected. A developmental milestone is a skill or activity that most children can do at a certain age. Milestones include sitting, walking, talking, having social skills and having thinking skills. Early intervention services can help improve your child’s development. They can help children from birth through 3 years old learn important skills. Services include therapy to help a child talk, walk, learn self-help skills and interact with others.

The Centers for Disease Control and Prevention (also called CDC) program Learn the signs. Act early. offers tools and information for parents who think their child may have developmental delays. You can find your state’s contact information for early intervention services. You don’t need a doctor’s referral or a medical diagnosis to ask for a free screening.

If your baby has congenital Zika syndrome, is it OK to breastfeed?

Yes. Breast milk is the best food for most babies for the first year of life. If your baby has problems swallowing or feeding, his provider may refer you to a lactation consultant for help. Even if your baby breastfeeds well after birth in the hospital, he may have feeding problems after you’re home. If you’re worried about your baby’s feeding, tell his provider.

More information

See also: Zika virus and pregnancyMicrocephaly, Protect your baby from Zika

Last reviewed: April 18, 2017