What to know: If your doctor suspects microcephaly during pregnancy
Care for Babies with Congenital Zika Syndrome
As a parent of a new baby with health conditions related to Zika virus infection during pregnancy, you may feel overwhelmed, worried, and unsure of how to care for your new baby. Read on to learn more about health conditions related to Zika virus and find out where you can go for help.
Zika virus infection during pregnancy can cause birth defects and developmental problems, which might occur together in a particular pattern called congenital Zika syndrome. Congenital means that it happened during the pregnancy, and the condition is present from birth. Syndrome refers to the pattern. The following conditions can occur in a baby with congenital Zika virus infection and are part of the pattern known as congenital Zika syndrome:
- Smaller than expected head size, called microcephaly
- Problems with brain development
- Feeding problems, such as difficulty swallowing
- Hearing loss
- Vision problems
- A problem with joint movement, called contractures
- Stiff muscles, making it difficult to move
We are still learning about the long term effects of Zika virus infection during pregnancy. Babies affected by Zika virus infection may have lasting special needs. Some of the conditions listed above can lead to problems with a child’s progress in moving, learning, speaking, and playing, called “developmental delay.”
Your baby may need additional exams and tests from various healthcare specialists. Some may happen before your newborn leaves the hospital and others will occur at later doctor visits. Your baby’s primary healthcare provider along with the healthcare team ensure that health issues are addressed and that you understand the recommended exams, tests, and therapies.
This webpage describes what to expect during the newborn period. It also discusses ways that parents can work with their child’s pediatrician, including identifying necessary medical specialists and coordinating care. It describes how family and supportive services can help parents and caregivers face challenges that might arise.
CDC developed guidance for healthcare providers treating babies with congenital Zika syndrome. The tests and screenings your newborn might receive in the first month of life include the following:
- A comprehensive physical exam. Your baby’s healthcare provider measures your baby’s weight, length, and head circumference (the distance around your baby’s head). Your baby’s skin, head and neck, heart, lungs, abdomen, genitals, muscles, bones, and alertness and responsiveness are examined.
- A test for Zika virus infection. Your baby’s healthcare provider may take small samples of your baby’s blood and urine. A negative test result does not always indicate that your baby was not infected with Zika virus. However, a positive test could confirm Zika virus infection and helps your baby’s healthcare provider decide how best to care for your baby. Your baby’s healthcare provider may also test your baby’s cerebrospinal fluid (the liquid that covers the brain and spinal cord) for Zika virus.
- A head ultrasound to check your baby’s brain development. Your baby’s healthcare provider may do a head ultrasound (using a machine that takes pictures of your baby’s brain). Sometimes, your doctor may refer your baby to see a specialist to have more advanced pictures, like magnetic resonance images (MRI), taken of his or her brain. These tests and physical exams help tell your healthcare providers if your baby has problems with brain development.
- An ophthalmology (eye) exam. Zika virus can cause damage to your baby’s eyes that could affect his or her vision. An ophthalmologist (eye doctor) may use special equipment to look carefully at your baby’s eyes to examine their structure and check for abnormalities. Your doctor may use eye drops to temporarily enlarge your baby’s pupils (the dark circle in the middle of the colored part of the eye). This allows your doctor to see inside the eyes.
- A hearing test. Your baby’s healthcare provider may do an auditory brainstem response (ABR) test during the first hospital stay or soon after you leave the hospital. This is a special hearing test that checks the brain’s response to sound. Small, painless stickers that can measure hearing are placed on your baby’s head and connected by wires to a computer. Earphones are placed over your baby’s ears. As sounds are made through the earphones, the stickers on your baby’s head send information to the computer about how your baby’s brain responds to the sounds.
Your baby might also receive referrals to see other types of doctors. If there are any abnormal results from your baby’s tests and screenings, the healthcare provider may refer you to a specialist. A specialist completed advanced education and training in a specific area of health or medicine. The specialist may order other tests that help determine whether your baby has conditions that frequently occur with congenital Zika syndrome or medical conditions caused by another congenital infection. These tests may be repeated multiple times in the first year of life.
Your baby should also have well-baby visits according to the American Academy of Pediatrics Schedule of Well-Child Care Visitsexternal icon. For more information about CDC’s testing recommendations for babies with congenital Zika syndrome, see our Roadmap for Parents of Babies with Congenital Zika Syndrome pdf icon[PDF – 217 KB].
Zika Care Connect can help you find necessary medical specialists to care for a baby with congenital Zika syndrome. Click hereexternal icon to learn more.
Your baby’s pediatrician may recommend that one or more of the following types of specialists see him or her:
- An infectious disease specialist assists with diagnosing your baby and ensures that your baby does not have abnormalities caused by another infection.
- A neurologist (nerves, spinal cord, and brain specialist) identifies developmental or neurologic problems and determines appropriate treatment for conditions related to the brain and nerves, such as seizures.
- An ophthalmologist (medical eye specialist) conducts a full eye exam to check for problems that may affect vision.
- A clinical geneticist confirms that your baby’s birth defects and medical problems are caused by Zika virus infection and has no other causes of birth defects.
- An endocrinologist (hormone and gland specialist) diagnoses and treats conditions that cause a person to have too much or too little of certain hormones, such as thyroid hormone.
- A pulmonologist (lung specialist) or otolaryngologist (ear, nose, and throat specialist) diagnoses and treats conditions affecting breathing.
- A lactation specialist, nutritionist, gastroenterologist, or speech or occupational therapist treats feeding problems, like difficulty swallowing.
- An orthopedist (bone and joint specialist), physiatrist, or physical therapist (physical rehabilitation specialists) diagnoses and treats conditions affecting the function of the bones, joints, and muscles.
Some specialists may be hard to find. Your baby’s healthcare provider may consider referring him or her to a healthcare facility with specialists who focus on treating babies and children with developmental issues.
If you live in an area without access to the specialist(s) and your baby’s doctor recommended a specialist a long distance from you, you may want to find transportation help.
- Contact your social worker, community health worker, nonprofit organization, or local government office to see if they can provide transportation help. If you are not sure where to start, talk to your child’s doctors or nurses or speak with your health insurance provider to see if they can connect you with a social worker.
- Check with your health insurance provider about options for help with transportation, such as shuttles or reimbursements for costs of traveling to and from doctor appointments.
- Ask friends, family, or community members to help with transportation.
Remember: The earlier you learn about the options that are available for your baby’s health care, the more you’ll be able to make the best decisions regarding his or her care.
Babies affected by Zika virus may have lasting special needs. Choosing a reliable pediatrician or pediatric healthcare provider to lead the medical care of your child is the first step in addressing your child’s healthcare needs. Working together with your pediatrician to manage your baby’s care can assure that care is coordinated and centered on his or her needs.
Listed below are ways to help make sure that care for your child is coordinated:
- Ask questions. Talk openly to your baby’s pediatrician, ask any questions, and share any concerns that you have about your child’s care. You may find it helpful to write down your questions and the answers that you get. Some important questions are
- How often should we have a visit with you?
- What specialists do you recommend for my child to see?
- How do I choose the right specialist for my child?
- What kinds of special care will my child need at home, childcare, or school?
- Can you connect me with an early intervention specialist?
- How can I find out about support groups that have parents with similar concerns?
- Work with your insurance provider. Ask your health insurance provider about your coverage for the types of healthcare providers your baby needs.
- Work with an early intervention specialist. An early intervention specialist is a healthcare provider with specialized knowledge for children with special healthcare needs. Early intervention services (from birth to age 3) include therapies to help children sit, stand, walk, talk or communicate in other ways, and interact with others. These services can have a significant effect on a baby’s ability to learn new skills. The early intervention specialist can help you find services to support and optimize your baby’s development. Depending on the policies in your state, your baby may be eligible to receive free or low cost early intervention services.
- Use a Care Plan. Some tests and exams that your baby has may be normal and seem unnecessary; however, because there are things still not known about the effects of Zika virus infection, it is important to get a complete picture of your baby’s health in order to make sure that your baby gets the care that he or she needs. The earlier doctors can detect problems in your baby’s development, the better prepared your family and your baby’s medical team can be to make the best decisions for your baby. It may turn out that your baby will not need to see all of the specialists listed above, but follow your doctor’s guidance. Also, keep track of the care your baby is receiving with a care planexternal icon.
A diagnosis of congenital Zika syndrome can feel overwhelming. Talking to someone about your challenges, like a friend or a professional, may help. Hospitals often have a social worker who counsels and connects you with additional therapy resources. Your health insurance may cover therapy services, and some community organizations may offer these services for free.
It might be helpful to talk with other people who have family members affected by birth defects. Other people might be able to address some concerns and questions you have. Often, they can give you information about resources and share what worked for them. Talking with other people may also provide emotional support and hope for the future. Ask your baby’s healthcare providers (doctors, nurses, social worker, and other care team staff) if they can connect you to any support groups.
What to know: If your baby was born with congenital Zika syndrome
What to know: If your baby may have been affected by Zika but has no related health conditions at birth
For Parents: Roadmap for Babies with Congenital Zika Syndrome
For Parents: Roadmap for Babies of Mothers Infected with Zika During Pregnancy Who Appear Healthy
Zika Clinical Summary Card