Cuidado para bebés nacidos con defectos de nacimiento asociados al síndrome congénito por el virus del Zika

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 lead to conditions in the baby called síndrome congénito por el virus del Zika. Congenital means that it happened during the pregnancy, and the condition is present from birth. A baby with congenital Zika syndrome might have one or more of the following conditions:

• Tamaño de la cabeza menor de lo normal, llamado microcefalia
• Problemas en el desarrollo del cerebro
• Problemas para alimentarse, como dificultad para tragar.
• Pérdida de la audición.
• Convulsiones
• Problemas de la vista.
• Un problema con la movilidad de las articulaciones, llamado contracturas
• Stiff muscles, making it difficult to move

We are still learning about the effects of Zika virus infection during pregnancy. Babies affected by Zika virus infection may have lasting special needs. Algunas de las afecciones mencionadas más arriba pueden producir problemas durante el crecimiento del niño en cuanto a su capacidad de movimiento, aprendizaje, habla y juego, denominados "retraso en el desarrollo".

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. Se describe cómo las familias y los servicios de apoyo pueden ayudar a los padres y cuidadores a afrontar los retos que puedan surgir.

Hable con el pediatra de su bebé sobre las pruebas y los controles que se hacen inmediatamente después del nacimiento y durante el primer año de vida

Los CDC desarrollaron guía para los proveedores de atención médica que tratan a bebés con síndrome congénito por el virus del Zika. The tests and screenings your newborn might receive in the first month of life include the following:

• Un examen físico integral. 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.
• Una prueba de detección de la infección por el virus del Zika. 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.
• Un examen oftalmológico (de la vista). 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.
• Una prueba de audición. 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. Estas pruebas pueden repetirse varias veces a lo largo del primer año de vida.

Su bebé también deberá cumplir con las consultas de bebés sanos según el programa de consultas de bebés sanos de la Academia Estadounidense de Pediatría. 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 – 2 pages].

Trabaje conjuntamente con el pediatra de su bebé para identificar a los especialistas médicos que son necesarios

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.

Algunos especialistas son difíciles de encontrar. 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. Si no sabe por dónde empezar, consúlteles a los médicos o enfermeros de su hijo o hable con su proveedor de seguro médico para ver si lo pueden contactar con un asistente social.
• 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.

Coordine la atención de su bebé con su proveedor de atención médica primaria

Babies affected by Zika virus may have lasting special needs. La primera medida que debe tomar para cubrir las necesidades del cuidado de la salud de su hijo es elegir a un pediatra o proveedor de atención médica pediátrica confiable para que brinde atención médica. El trabajo conjunto con su pediatra para administrar la atención de su bebé le garantizará que dicha atención esté coordinada y centrada en torno a las necesidades de su hijo.

Listed below are ways to help make sure that care for your child is coordinated:

• Haga preguntas. 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. Algunas preguntas importantes son:
  • How often should we have a visit with you?
  • ¿Qué especialistas nos recomendaría que vea mi hijo?
  • ¿Cómo elijo al especialista adecuado para mi hijo?
  • What kinds of special care will my child need at home, childcare, or school?
  • ¿Puede contactarme con algún especialista en intervención temprana?
  • ¿Cómo puedo averiguar acerca de grupos de apoyo para padres con la misma preocupación?
• Trabaje con su proveedor de seguro. Consulte a su proveedor de seguro médico acerca de la cobertura disponible para los tipos de proveedores de atención médica que su bebé necesita.
• Trabaje con un especialista en intervención temprana. 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. Según las políticas de su estado, su hijo puede ser elegible para recibir servicios de intervención temprana a bajo costo o en forma gratuita.
• 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 plan.

Buscar servicios de apoyo y para la familia

Recibir un diagnóstico de síndrome congénito por el virus del Zika puede ser algo abrumador. Hablar con otra persona, ya sea con un amigo o un profesional, acerca de los retos que deberá enfrentar puede servir de ayuda. 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 free.

Podría servir de ayuda hablar con otras personas cuyos familiares también tienen defectos de nacimiento. Otras personas podrían responder algunas de sus dudas o cuestiones. Often, they can give you information about resources and share what worked for them. Hablar con otras personas podría además servir como apoyo emocional y darle esperanzas para el futuro. Pregúntele a los proveedores de atención médica de su bebé (médicos, enfermeras, asistente social y otro personal del equipo médico) si pueden contactarlo con grupos de apoyo.

Los CDC y otras organizaciones tienen recursos en los servicios de apoyo y para la familia.