Additional Resources for Caregivers of Children with Zika-related Complications

Caregivers of children with Zika-related complications are often overwhelmed and are in need of support, guidance, and care coordination with a medical home. Healthcare providers should work closely with parents and families to monitor their infant’s development and determine what choices are available and how to best care for their infant’s condition and needs.

Many of the short and long-term effects of prenatal Zika infection on a baby are unknown. Until we learn more, recommendations from the interim guidance should be followed for any baby diagnosed with congenital Zika virus infection.

Download the companion evaluation and outpatient management tool.
English Cdc-pdf[PDF – 181 KB] | Spanish Cdc-pdf[216 KB]

ZCC Provider Referral Network Specialties
  • Maternal fetal medicine
  • Pediatric neurology*
  • Pediatric ophthalmology*
  • Radiology*
  • Audiology*
  • Mental health services

*This includes providers who care for infants, whether or not their scope of practice is exclusively pediatric.

Zika Care Connect

Access to healthcare services for pregnant women and infants affected by Zika virus is critical to help ensure they receive the coordinated care they need. Improved access to care can facilitate early identification of developmental delays in infants and children, potentially reduce the long-term effect of Zika on children and families, and give children the best chance to reach their full potential.

Zika Care Connect (ZCC) aims to improve access to specialty healthcare services for the management of Zika virus infection during pregnancy and outcomes in infants caused by Zika. The program targets the most important and removable barriers to care, as identified by maternal and pediatric care experts. ZCC focuses on women infected with Zika during pregnancy, as well as infants born to mothers with laboratory evidence of Zika.

Developed by CDC and maintained in collaboration with March of Dimes, ZCC establishes a network of specialized healthcare providers who can care for patients and families affected by Zika virus.

Zika Care Connect Elements

ZCC helps families find specialty healthcare services and identify providers whose practice meets their needs (e.g., location, language, insurance). Healthcare providers can also use ZCC as a resource for coordinating care for patients affected by Zika who need access to other specialists.

  • Provider Referral Network – a network of specialists knowledgeable about and able to provide healthcare services for patients with Zika, aligned with CDC’s clinical guidance recommendations
  • Website – searchable database of the Provider Referral Network, patient resource tools, and additional resources to promote linkage between maternal and pediatric services
  • HelpLine – staffed by professionals available to answer patient questions and assist patients in finding healthcare specialists that meet their needs

All Zika Care Connect network providers will receive

  • Email updates from the ZCC listserv regarding updated CDC clinical guidance
  • Patient resource tools that include information about the ZCC website and HelpLine
  • Referrals from the ZCC website, HelpLine, and other network providers

Questions? Call the Zika Care Connect Helpline: 1-844-677-0447 (toll-free) or visit the ZCC websiteExternal.

General Resources

Early Intervention
Early intervention (before school age) can have a significant impact on a child’s ability to learn new skills and the support families have to help the child. Early intervention includes a range of targeted services to help young children who have developmental delays or specific health conditions. ;Services can include special instruction, physical and occupational therapy, speech and language therapy, and other services to help young children. Every US state and territory provides these services through its own comprehensive, coordinated program. Federally funded early intervention services may be offered for free or at low cost to families. Health care providers should refer families to early intervention as soon as possible to ensure maximum benefit. Visit CDC’s Early Intervention Contacts page for early intervention contacts by state, commonwealth or territory.

Bright FuturesExternal
Bright Futures is a national initiative of the American Academy of Pediatrics to promote and improve the health and well-being of infants, children, and adolescents. The site includes publications, training tools, and distance learning materials.

Developmental and Behavioral Pediatrics OnlineExternal
Developmental and Behavioral Pediatrics Online is a website for professionals interested in child development and behavior in a medical setting. The website focuses on primary care development and behavior, including early intervention and screening, and provides articles, handouts, and materials about developmental disabilities developed for professionals and parents. It also offers a practice section with information to support primary and specialty healthcare practice.

AAP Medical HomeExternal
A medical home is an approach to providing comprehensive and high quality primary care that facilitates partnerships between patients, clinicians, medical staff, and families. This website provides tools, resources, state specific information, and promising practices in pediatric medical home implementation.

Birth to 5: Watch Me ThriveExternal
A coordinated federal effort to encourage healthy child development, behavioral and developmental screening for children, and support for the families and providers who care for them.

Learn the Signs. Act Early.
CDC’s “Learn the Signs. Act Early.” program aims to improve early identification of developmental disabilities so children and families can get the needed services and support. The program is made up of three components: health education campaign, Act Early Initiative, and research and evaluation. The program also offers free materials, such as tools for tracking milestones and to support developmental screening and monitoring that can be used by parents, healthcare providers, or health departments.

WHO Toolkit: For the Care and Support of People Affected by Complications Associated with Zika VirusExternal
This toolkit includes recent guidelines and supportive documents from WHO and partners as part of the overall response to Zika virus. The toolkit can be adapted to unique national or local context and serves as a model guide to enhance country preparedness for Zika virus outbreaks. The toolkit is made up of individual manuals with respective modules for health planners and managers, health care professionals, and community workers.

Readiness for an Increase in Congenital Zika Virus Infections in the United States: Geographic Distance to Pediatric Subspecialist CareExternal
Disaster Medicine and Public Health Preparedness, 2018
Children with disabilities related to congenital (being born with) Zika virus infection will need care from pediatricians who specialize in the different types of care needed by children infected by the Zika virus before birth. This study explains how travel distance to certain specialty health care providers may be a barrier in getting care for a child with disabilities related to congenital Zika virus infection.

Special Needs and Developmental Disabilities Resources

Children & Youth with Special Health Care NeedsExternal
The Association of Maternal & Child Health Programs is a national center dedicated to improving healthcare coverage and financing for children and youth with special healthcare needs.

Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programsExternal
This professional development program enhances the clinical expertise and leadership skills of professionals from a variety of disciplines, who are dedicated to caring for children with neurodevelopmental and other related disabilities, including autism.

Supporting Children with Special Healthcare Needs Planning Resource Cdc-pdf[PDF – 300 KB]External
This matrix from the U.S. Department of Health and Human Services, Office of the Assistant Secretary for Preparedness and Response highlights some of the existing federal and national services and programs for supporting children with special healthcare needs.

Vision and Hearing Resources

CDC’s Hearing Loss Resources for Health Professionals
This page has tools and information about hearing loss for health professionals, including free educational materials to give to patients.

Vision LossExternal Chapter from Visual Impairments: Determining Eligibility for Social Security Benefits
This chapter reviews the major issues in testing infants’ and children’s visual acuity, fields, and contrast sensitivity and offers some recommendations for testing to ensure fair evaluation of their visual abilities.

KanLovKids Low VisionExternal
This site hosted by the Kansas State School for the Blind and Lions Club International provides information and links to resources about low vision devices.

National Center for Children’s Vision and Eye HealthExternal
A major resource about children’s vision for providing leadership development, health promotion, communication and marketing, as well as education and training to public and private entities throughout the United States.

Parent Resources

Depression in Mothers: More than the Blues Cdc-pdf[PDF – 608 KB]External
A toolkit created by the Substance Abuse and Mental Health Services Administration for family service providers that help mothers struggling with depression.

Promoting Stress Management for Pregnant Women during the Zika Virus Disease Outbreak: A Resource for Healthcare ProvidersExternal
This webpage services as a resource to help clinicians promote stress management for pregnant women and women who want to conceive.

SAMSA Behavioral Health Resources on ZikaExternal
Practical steps to ease stress and anxiety about the Zika virus. Resources for public health official, pregnant women, parents, etc. A toolkit for family service providers.

Psychosocial support for pregnant women and for families with microcephaly and other neurological complications in the context of Zika virus: Interim guidance for healthcare providers Cdc-pdf[PDF – 1.1 MB]External
This document was developed in early 2016, when the causal link between Zika virus infection and microcephaly had not yet been established. Designed for healthcare practitioners and anyone else providing support to pregnant women, this publication offers guidance in communication techniques; emotional and behavioral distress reactions; and ways to provide support, teach stress management techniques, and offer advice on parenting to expectant and new mothers.

AAP Zika Virus:External Psychosocial Support Videos & Handouts
Psychosocial support resources related to Zika from the American Academy of Pediatrics.