Support for Families and Caregivers of Babies Affected by Zika

Mother Cuddling Baby Daughter At Home

Families of babies affected by Zika virus (Zika) 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. Others 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. The resources on this page can provide guidance and support for families and caregivers of infants affected by Zika virus infection during pregnancy.

General Zika Information

CDC: What Parents Should Know about Zika

HealthyChildren.orgexternal icon
The Healthy Children website is a resource for families from the American Academy of Pediatrics. This webpage provides general information about what parents should know about Zika virus.

March of Dimesexternal icon
This March of Dimes website provides families with general information about Zika virus infection during pregnancy. It also includes links to other related resources.

Family Support

Family Voicesexternal icon
Family Voices provides information and education about the care of children with special health needs. The website includes links to resources and information on advocacy and Family to Family Health Information Centersexternal icon.

Center for Parent Information and Resourcesexternal icon
Find information to help support you in caring for your child with a disability, or helping children with disabilities achieve their full potential.

Parent to Parent-USAexternal icon
Parent to Parent programs provide emotional and informational support to families of children who have special needs, most notably by matching parents seeking support with an experienced, trained ‘support parent’.

Partnerships for Parentsexternal icon
Partnership for Parents was created by parents, for parents. It is a resource to share stories and experiences, get support, and find guidance through a child’s illness.

KidsHealth Support for Parents of Kids with Special Needsexternal icon
Find tips and information on caring for a child with special needs.

Monitoring a Child’s Development

Please keep in mind these resources do not specifically address Zika virus, but are helpful in monitoring a child’s development.

CDC’s “Learn the Signs. Act Early.” Program
The campaign aims to promote an awareness of healthy developmental milestones in early childhood, the importance of tracking each child’s development and the importance of acting early if there are concerns. Visit the “Learn the Signs. Act Early.” website to download or order free tools and resources to help parents and other caregivers keep track of their child’s development and get help if they are concerned.

Birth to 5: Watch Me Thriveexternal icon
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.

Physical Developmental Delaysexternal icon: What to Look For (Tool)
An interactive web-based tool developed by the American Academy of Pediatrics  that provides information on what parents should look for when monitoring their child for a physical developmental delay.

CDC’s Hearing Loss Resources
This website has tools and information about hearing loss for families.

Children and Visionexternal icon
The American Optometric Association website provides information about vision screening for infants.

CDC’s Developmental Disabilities Resources
Find links to websites with information on developmental disabilities.

Special Needs and Developmental Disabilities Resources

Children & Youth with Special Health Care Needsexternal icon
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 icon
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.

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 Loss Chapter from Visual Impairments: Determining Eligibility for Social Security Benefitsexternal icon
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 icon
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 icon
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.

Resources and Services

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.

  • Families can contact their local early intervention system to learn how to access these services. Visit CDC’s Early Intervention Contacts page for early intervention contacts by state, commonwealth or territory.

Bright Futuresexternal icon
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.

AAP Medical Homeexternal icon
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.

Early Head Startexternal icon
Early Head Start provides early, continuous, intensive, and comprehensive child development and family support services to low-income infants, toddlers and their families, along with pregnant women and their families.

Early and Periodic Screening, Diagnostics and Treatment (EPSDT)external icon
The EPSDT program provides health screenings, diagnostic tests, and treatment of health problems for children and adolescents under the age of 21 covered under Medicaid.

Caregiver Resources

WHO Toolkit: For the Care and Support of People Affected by Complications Associated with Zika Virusexternal icon
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 icon
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.

Parent Resources

Depression in Mothers: More than the Bluesexternal icon
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 icon
This webpage services as a resource to help clinicians promote stress management for pregnant women and women who want to conceive.

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 pdf icon[PDF – 1.1 MB]external icon
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: Psychosocial Support Videos & Handoutsexternal icon
Psychosocial support resources related to Zika from the American Academy of Pediatrics.