What Is Congenital Zika Syndrome?
Source: Genetic and Rare Diseases (GARD) Information Center
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Congenital Zika Syndrome
CZS; Congenital ZIKV Infection
Congenital Zika syndrome is a unique pattern of birth defects and disabilities found among babies infected with Zika virus during pregnancy. This can include microcephaly (small head), decreased brain tissue, damage to the back of the eye, joint issues, and too much muscle tone. Learn more about the health conditions related to congenital Zika syndrome.
Hold Me Mother, Mother embraces her child born with microcephaly.
Image by Felipe Fittipaldi / Wellcome Photography Prize 2019/Wikimedia
Zika fever - Health Effects & Risks
Image by Beth.herlin
Source: Genetic and Rare Diseases (GARD) Information Center
Microcephaly
Image by CDC
Microcephaly is a birth defect in which a baby’s head is smaller than expected when compared to babies of the same sex and age. Babies with microcephaly often have smaller brains that might not have developed properly.
Zika virus infection during pregnancy is a cause of microcephaly. During pregnancy, a baby’s head grows because the baby’s brain grows. Microcephaly can occur because a baby’s brain has not developed properly during pregnancy or has stopped growing after birth.
Congenital Zika syndrome is a unique pattern of birth defects and disabilities found among fetuses and babies infected with Zika virus during pregnancy. Although many of the features seen as part of congenital Zika syndrome can be caused by other infections during pregnancy, there is often a pattern of the features below that has been termed congenital Zika syndrome:
Babies who were infected with Zika before birth may have damage to their eyes and/or the part of their brain that is responsible for vision, which may affect their visual development. Both babies with and without microcephaly can have eye problems. If your baby was born with congenital Zika infection, he or she should receive the recommended screenings and tests to check for eye and other health problems, even if your baby appears healthy.
A recent study in Brazil found that at 19-24 months, babies with congenital Zika virus infection exhibited challenges with sitting independently, feeding, and sleeping. The babies also experienced seizures and hearing and vision problems, such as not responding to the sound of a rattle and not being able to follow a moving object with their eyes. It is important to note that babies affected by Zika virus will continue to require specialized care from many types of healthcare providers and caregivers as they age.
Not all babies born with congenital Zika infection will have all of these problems. Some infants with congenital Zika virus infection who do not have microcephaly at birth may later experience slowed head growth and develop postnatal microcephaly.
Recognizing that Zika is a cause of certain birth defects does not mean that every pregnant woman infected with Zika will have a baby with a birth defect. It means that infection with Zika during pregnancy increases the chances for these problems. Scientists continue to study how Zika virus affects mothers and their children to better understand the full range of potential health problems that Zika virus infection during pregnancy may cause.
Based on the available evidence, we think that Zika virus infection in a woman who is not pregnant would not pose a risk for birth defects in future pregnancies after the virus has cleared from her blood. From what we know about similar infections, once a person has been infected with Zika virus, he or she is likely to be protected from a future Zika infection.
Source: Centers for Disease Control and Prevention (CDC)
Newborn hearing screening
Image by U.S. Air Force photo/Samuel King Jr.
Hearing loss has been found among some babies born to people with evidence of Zika virus infection during pregnancy. Read below to learn more about how Zika virus might affect your baby’s hearing and find out what you can do to get the care your baby needs.
Zika virus infection during pregnancy might cause a range of health problems, including hearing loss, in babies. Hearing loss can be mild to severe.
The signs and symptoms of hearing loss are different for each baby. Some babies might be diagnosed shortly after birth and some might be diagnosed at a later age. Even if your baby has passed a hearing screening before, it is important to look out for the following signs:
It is important to let a doctor or healthcare provider know that your baby may have been exposed to Zika during pregnancy. It may be helpful to take notes or videos of your baby’s behavior to explain your concerns during the visit. The doctor may refer your baby to a specialist, such as an audiologist, to get their hearing and ears checked.
If you think there could be a problem with your baby’s hearing, talk to your baby’s doctor or healthcare provider about your concerns.
A newborn hearing screening is the first exam to determine if your baby might have hearing loss. If the screening test indicates that there might be a problem, a follow-up test is used to confirm the hearing loss and determine the severity. Nearly all newborns are screened for hearing problems before leaving the hospital. If your baby passes their hearing screening but displays concerning behavior, it is important that you express your concerns to your baby’s doctor or healthcare provider.
Hearing loss can affect a child’s ability to develop speech, language, and social skills. Treatment and intervention services can help a child with hearing loss. The type of treatment or intervention options, such as hearing aids, can vary depending on the severity of your baby’s hearing loss. Your baby will be evaluated by a pediatrician and hearing specialist before treatment options are determined. There are services for children from birth through 36 months of age called Early Intervention or Part C services. Even if your child has not been diagnosed with hearing loss, he or she may be eligible for early intervention and treatment services.
We are still learning about the effects of Zika on a baby’s ability to hear, as well as what treatments may improve hearing. It is important for you to work with your baby’s doctor or healthcare provider early to manage your baby’s care together.
Babies with hearing loss need support as they grow and develop. A team of many different specialists may work together to evaluate and care for your baby. It is important to work with your baby’s doctor or healthcare provider to create a medical home to ensure your baby is receiving ongoing, coordinated care.
Stay in regular communication with the doctors and keep regular appointments. Make sure your baby is getting the recommended screenings and follow-up care. If you have concerns, be sure to talk with your baby’s doctor or healthcare provider.
Source: Centers for Disease Control and Prevention (CDC)
Newborn Hearing Screening
Also called: Universal Neonatal Hearing Screening, Early Hearing Detection and Intervention, EHDI
The newborn hearing screening is a routine test used to detect deaf or hard-of-hearing babies. This test is done so that early treatment and interventions can be provided if your baby has hearing problems.
Hearing Tests for Children
Also called: Pediatric Audiometry
Hearing tests for children measure how well your child can hear. A child can be born with a hearing problem or develop one later on. If your child is diagnosed with hearing loss, you may be able to take steps to treat or manage the condition.
infant Brain Development
Image by TheVisualMD
Developmental delay has been found among some babies born to people with evidence of Zika virus infection during pregnancy. Read below to learn more about how Zika virus might affect your baby’s development and find out what you can do to get the care your baby needs.
Zika virus infection during pregnancy has been linked to brain abnormalities and other birth defects in babies. Zika infection during pregnancy might affect how the baby’s brain develops and could lead to one or more developmental problems. Levels of developmental delay can vary greatly. Some babies may have more severe problems than others. Developmental delay may cause a baby to learn and develop at a slower rate than other babies of the same age. We continue to learn how babies born to mothers who had Zika virus during pregnancy grow and develop.
A baby with developmental delay may reach the following developmental milestones later than other babies their age:
In addition, a baby with developmental delay may have trouble sleeping or have a delayed response when shown a new object or exposed to a new sound.
Visit CDC’s Milestones in Action image library and checklist to view average developmental milestones for babies ranging from 2 months to 5 years.
If you were exposed to Zika virus during pregnancy and suspect your baby has developmental delay
Contact your local early intervention agency (for children younger than 3 years) or public school (for children 3 years and older) for an evaluation.
We are still learning about the effects of Zika virus on a baby’s development. It is important for you to work with your baby’s doctor or healthcare provider early to manage your baby’s care together.
Babies with developmental delays possibly due to Zika virus infection before birth need support as they grow and develop. A team of many different specialists may work together to evaluate and care for your baby. It is important to work with your baby’s doctor or healthcare provider to create a medical home to ensure they are receiving ongoing, coordinated care.
Stay in regular communication with your baby’s doctors and keep regular appointments. Make sure your baby is getting the recommended screenings and follow-up care. If you have concerns, be sure to talk with your baby’s doctor or healthcare provider.
Source: Centers for Disease Control and Prevention (CDC)
Infant Eye cross section
Image by TheVisualMD
Serious eye problems have been found among some babies born to people with evidence of Zika virus infection during pregnancy. Read below to learn more about how Zika virus may affect your baby’s eyes and find out what you can do to get the care your baby needs.
Zika infection during pregnancy might damage a baby’s eyes and lead to different types of eye or vision problems. Eye and vision problems can range from mild to severe. All babies born to mothers who had possible Zika virus infection during pregnancy should receive an eye exam by an ophthalmologist (a doctor who specializes in caring for the eyes) by one month of age.
Some eye problems that have been observed in babies exposed to Zika virus during pregnancy include
Infants born to mothers with Zika infection during pregnancy may have mild to severe damage to the optic nerve (nerve that sends information from the eye to the brain).
Vision problems can mean your baby
A baby who is experiencing problems with their eyes or vision might
If you think your baby may have vision problems, talk to a doctor or healthcare provider about your concerns.
CDC recommends that babies born to mothers with Zika infection during pregnancy have their eyes checked by an ophthalmologist within 1 month after birth. This doctor will perform a thorough eye exam on your baby and check for problems with the structure of the eye, as well as any problems with the eye that might be a result of problems with the brain.
There is no treatment available that will restore complete vision for babies with severe eye problems. For other conditions, steps that can be taken include
We are still learning about the effects of Zika on a baby’s eyes and what treatments can improve a baby’s vision. It is important for you to work with an ophthalmologist early to manage your baby’s eye care together.
Babies with vision problems need support as they grow and develop. A team of many different specialists may work together to evaluate and care for your baby. It is important to work with your baby’s doctor or healthcare provider to create a medical home to ensure your baby is receiving ongoing, coordinated care.
Stay in regular communication with the doctors and keep regular appointments. Make sure your baby is getting the recommended screenings and follow-up care. If you have concerns, be sure to talk with your baby’s doctor or healthcare provider.
Source: Centers for Disease Control and Prevention (CDC)
Eye Examinations
Also called: Eye Exams, Routine Eye Examination, Standard Ophthalmic Exam, Vision Tests
A standard eye exam is a series of tests done to check your vision and the health of your eyes. Key elements of an eye examination include dilation, tonometry, visual field test and a visual acuity test.
Visual Acuity Test
Also called: Snellen Test
A visual acuity test is an eye exam that checks the smallest letters you can read on a standardized chart (Snellen chart) or a card held 20 feet (6 meters) away. Visual acuity refers to your ability to recognize the shapes and details of the things you see.
Visual Field Test
Also called: Perimetry, Tangent screen exam, Automated perimetry exam, Goldmann visual field exam, Humphrey visual field exam
A visual field test is an eye examination that can detect dysfunction in central and peripheral vision which may be caused by various medical conditions such as glaucoma, stroke, pituitary disease, brain tumors or other neurological deficits.
Color Vision Testing
Also called: Color Blindness Test, Color Perception Test, Ishihara Color Test
Eye care professionals use a variety of tests to diagnose color blindness. These tests can quickly diagnose specific types of color blindness. People with color blindness aren’t aware of differences among colors that are obvious to the rest of us.
Eye Pressure Test
Also called: Intraocular Pressure (IOP) Measurement, Tonometry
Eye pressure, also called intraocular pressure (IOP), is a measurement of the fluid pressure inside the eye. Measuring it is like measuring blood pressure using a method called tonometry. Having eye pressure that’s too low or too high can damage your vision.
Slit-Lamp Exam
Also called: Biomicroscopy, Slit Lamp Exam, Slit Lamp Test
A slit lamp exam is an eye examination using an instrument that combines a low-power microscope with a light source that makes a narrow beam of light. The instrument may be used to examine the retina, optic nerve, and other parts of the eye.
Schirmer Test
Also called: Basal Secretion Test, Dry Eye Test, Tearing Test
A Schirmer test tells your eye doctor how quickly your eyes make tears. Your eye doctor will put a small piece of paper on the edge of your eyelid and see how long it takes for your body to make tears.
Tear Break-Up Time Test
Also called: TBUT
A tear break-up time (TBUT) test checks how long your tear film (layer of tears on your eyes) lasts after you blink. If your tear film does not last long, you may have dry eye.
Ophthalmoscopy
Also called: Funduscopy, Retinal Examination
Ophthalmoscopy is an exam that uses a magnifying lens and a light to check the fundus of the eye (back of the inside of the eye, including the retina and optic nerve). Ophthalmoscopy may be used to check for eye problems, such as glaucoma, macular degeneration, eye cancer, optic nerve problems, or eye injury.
Retinoscopy
Also called: Ret, Shadow Test, Skiametry, Skiascopy
Retinoscopy is an objective determination of the refractive state of the eye (nearsightedness, farsightedness, astigmatism). By using a retinoscope, the amount of correction and the power of lens needed can be determined.
Public Health advisory: Zika virus
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 of the brain or eye, which can occur alone or with developmental problems, 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:
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.” We are still learning about the long term effects of Zika virus infection during pregnancy, including the possible risk for developmental problems in children born without birth defects.
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 will 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 Zika-related birth defects and developmental problems. The tests and screenings your newborn might receive in the first month of life include the following:
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 Visits. 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 – 217 KB].
Your baby’s pediatrician may recommend that one or more of the following types of specialists see him or her:
Sometimes finding and getting an appointment with a specialist can be challenging. Your baby’s primary healthcare provider can help and may consider referring your baby 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.
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. Creating a medical home with a 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 ensure 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:
A diagnosis of Zika-related birth defects or developmental problems or 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.
Source: Centers for Disease Control and Prevention (CDC)
Zika Virus Test
Also called: ZIKV Test
A Zika virus test checks a sample of blood or urine to look for Zika virus. Zika is a virus that is mostly spread by mosquitos. A Zika infection during pregnancy can cause serious birth defects in the unborn baby.
Microcephaly
Image by CDC
Families of babies affected by Zika virus may be overwhelmed, worried, and unsure of next steps in caring for their baby. A baby affected by Zika virus may be born with significant health issues, like microcephaly. Other babies may not have apparent symptoms at birth, but may develop them over time. Because we are still learning about the long-term effects of Zika infection during pregnancy, it is important that parents work with their doctors to manage the medical care of their baby.
Parents, you know your baby best. If you think there is a problem or are concerned about your baby’s health and development, talk to your baby’s doctor and share your concerns. In addition, there are services, like early intervention, that can help with your baby’s development and support programs that can help connect you with other families.
Source: Support for Families and Caregivers of Babies Affected by Zika | CDC
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