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Care for Babies with Congenital Zika Syndrome

Work with Your Baby’s Pediatrician to Establish a Medical Home

Babies affected by Zika 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. Because your baby’s care will involve more than one doctor, working together with your pediatrician to manage your baby’s care can help you create a medical home that is centered on the needs of your baby. Your child’s pediatrician will be an essential part of your child’s medical home and in developing a complete plan for your child’s care. Below is some information to help you coordinate care and establish a medical home for your child.

What Is a Medical Home?

Your baby may see different providers at the same location or many locations; a medical home is not a place, it is an approach to health care that makes sure your baby gets the best, most appropriate services.

  • Talk to your baby’s pediatrician about any questions and concerns that you have about your child’s care. You may find it helpful to write down the questions and the answers that you get. Some important questions are
  • Ask your health insurance provider to help you identify a medical home that includes the types of healthcare providers your baby needs.

An early intervention specialist is a healthcare provider with specialized knowledge about early intervention services for children with special healthcare needs. Early intervention services (from birth to 3 years of age) include therapy to help the child talk, walk, 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. These are physical, cognitive, and social/emotional resources and support systems.

Work with Your Baby’s Pediatrician to Identify Necessary Medical Specialists

A specialist is someone who has completed advanced education and training in a specific area of health or medicine. Your baby’s pediatrician may recommend that he or she be seen by one or more of the following types of specialists.

Use a Care Plan

It may not be necessary for your baby to see all of these specialists. Since there are still facts about the effects of Zika virus infection that we do not yet know, it’s important to get a complete picture of your baby’s health to get the care they need. The earlier doctors can detect irregularities 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. Follow your pediatrician’s guidance and keep track of the care your baby is receiving with a care plan.

  • A neurologist (nerves, spinal cord, and brain specialist) to identify developmental or neurologic problems and determine appropriate treatment for conditions such as seizures.
  • An ophthalmologist (medical eye specialist) to conduct a full eye exam to check for problems that may affect vision.
  • An endocrinologist (hormone and gland specialist) to identify issues with thyroid functioning and determine appropriate treatment.
  • An orthopedist (musculoskeletal specialist) to diagnose and manage conditions affecting the function of the bones.
  • A physical therapist or physiatrist (physical rehabilitation specialists) to manage neurological or muscular conditions.
  • A pulmonologist (lung specialist) or otolaryngologist (ear, nose, and throat specialist) to diagnose and manage conditions affecting breathing.
  • A lactation specialist, nutritionist, gastroenterologist, or speech or occupational therapist to manage any feeding problems, like difficulty swallowing.

Some specialists may be hard to find. If you live in an area without access to the specialist(s) your baby’s pediatrician has recommended, you may want to find transportation help.

  • Contact your social worker, community health worker, nonprofit organization, or local government office to see if they are able to provide transportation assistance. 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 transportation assistance, such as shuttles or reimbursements for costs to and from doctor appointments.
  • Coordinate with friends, family, or community members to help with transportation.

Remember: The earlier you learn about what options are available for your baby’s healthcare, the more you’ll be able to make the best decisions regarding his or her care.

Zika Care Connect Can Help
If you need assistance in identifying necessary medical specialists to care for a baby affected by Zika, Zika Care Connect can help. Click here to learn more.

Special Care for Babies Born with Birth Defects Related to Congenital Zika Syndrome

Babies with congenital Zika syndrome may experience different health problems as they develop, but it’s difficult to know how Zika virus infection will affect each baby. Work with your doctors to manage your baby’s medical care together. Ask your baby’s doctor to explain the results from the different types of screenings and exams for your child.

The tests and screenings your baby will likely receive before leaving the hospital include

  • A physical exam. Your baby’s doctor will take measurements of your baby’s weight, length, and head circumference (the distance around your newborn baby’s head). The doctor will also examine your child’s skin, head and neck, heart, lungs, abdomen, genitals, muscles, bones, and alertness and responsiveness.
  • A check of your baby’s head and brain development. Your baby’s doctor or nurse will measure around your baby’s head (during the physical exam) and will do a head ultrasound (a tool that takes pictures of your baby’s brain). Sometimes, your baby’s healthcare provider may refer you to a specialist for more advanced pictures, like magnetic resonance imaging (MRI), to be taken of your baby’s brain. These activities will help inform your medical team if your baby may have any problems with brain development.
  • A neurologic exam. This will help your medical team assess your baby’s mental status and alertness, eyes, hearing, and suck and swallow reflexes. The provider will also check your baby’s ability to move, grab things, and his or her reflexes.
  • A hearing test. Your baby’s healthcare provider should do an auditory brainstem response (ABR) test during the first hospital stay or soon after you leave the hospital. This is a special kind of hearing test that checks the brain’s response to sound. Small, painless stickers called “electrodes” will be placed on your child’s head. These electrodes are connected to a computer. Your baby will be given earphones, and as sounds are made, the electrodes will send the computer information about how your baby’s brain responds to them. Identifying hearing loss early on is important, because interventions can help babies to reach their full potential. When it is not identified, hearing loss can delay speech and language development, as well as affect thinking, learning, and social skills.
  • A test for Zika virus infection. Your baby’s healthcare provider will take a small sample of your baby’s blood and urine.
  • Blood tests.
    • A complete blood count (CBC) test. This test makes sure that all the different parts of your baby’s blood are at normal levels.
    • A metabolic panel. This test will help get information about your baby’s metabolism. Metabolism is the way a person’s body converts food into energy. The metabolic panel typically measures sugar levels in the blood, electrolyte and fluid balance, and kidney and liver function.
    • A set of liver function tests. This will help your baby’s healthcare provider see if his or her liver is functioning properly.
  • An ophthalmology (eye) exam. This is when an ophthalmologist (eye doctor) looks carefully at your baby’s eye to see how well his or her eyes are functioning.

Because care for your baby can be complex, your baby’s doctor may consider transferring you to a hospital with subspecialty care that may have specialists, such as neurologists, endocrinologists, and other subspecialists who focus on treating babies and children.

If your baby tested positive for Zika virus, he or she may also receive the following

For the entire first year of life

  • Your baby should receive routine health care, including monitoring of feeding and growth, to make sure he or she is growing at a normal rate.

Around two weeks of age

  • Your baby may receive a thyroid screen. This blood test will help determine if your baby’s thyroid gland is working properly. The thyroid gland is located in the neck and controls how quickly the body burns energy, makes proteins, and how sensitive the body is to other hormones. Normal functioning of the thyroid gland is important for physical and mental development.
  • Your baby may be referred to an early intervention specialist or early intervention services. These services include therapy to help the child talk, walk, and interact with others. Early intervention services are intended for children from birth to 3 years of age and can have a significant effect on a child’s ability to learn new skills.

Around 1 month of age

  • Neurologic exam (described above)

Around 2 months of age

  • Neurologic exam (described above)

Around 3 months of age

  • Thyroid screen (described above)
  • Ophthalmology exam (described above)

Around 4-6 months of age

  • Repeat ABR testing (described above)

Seek Out Family and Supportive Services

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 can counsel and connect you with additional therapeutic 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 best 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.

CDC and other organizations have resources on family and support services.

Related Resources

What to know: If your doctor suspects microcephaly during pregnancy

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 Parents of Babies with Congenital Zika Syndrome

For Parents: Roadmap for Parents of Babies Infected with Zika Before Birth Who Appear Healthy