Children's Hospital Colorado
Heart institute
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Heart institute
Critical Congenital Heart Disease Screening Program

Congenital Heart Disease Resources for Families

Children’s Hospital Colorado encourages parents to participate in the health and treatment of their children. The below resources will support, educate and help parents of children with critical congenital heart diseases (CHD).

Advocacy and support groups

Cardiac Kids

Cardiac Kids is a group of volunteers at Children’s Hospital Colorado that offers support to kids who have congenital heart conditions and their parents.

Child Health Advocacy Institute

The Child Health Advocacy Institute identifies and studies threats facing children and develops and implements interventions to improve pediatric health outcomes.

The Congenital Heart Information Network

The Congenital Heart Information Network provides information and support to families with children living with congenital heart defects and professionals that work with them.

Children’s Heart Foundation

The Children’s Heart Foundation (CHF) advocates for increased CHD research and other significant CHD issues in both the private and public arenas.

Kids with Heart National Association for Children’s Heart Disorders

This association provides support and educates families of children living with congenital heart defects and increases public awareness of the issues that these families deal with on a daily basis.

U.S. Congress

A website that makes federal legislative information freely available to the public, such as information about bills, resolutions, committee information, activity in congress, congressional record, and treaties.

National Conference of State Legislatures

NCSL is a bipartisan organization that provides opportunities for policymakers to exchange ideas on critical state issues. The site includes website links to state legislatures.

American Academy of Pediatrics

The academy works with the government and national organizations to advocate for child health and safety issues.

Congenital Heart Public Health Consortium (CHPHC)

This is a group of organizations who use resources in public health to educate and affect change for individuals with congenital heart defects.

American Heart Association

The AHA provides resources, education and tips for healthy living and healthy hearts.

Children’s Heart Association

This association is a support group for families with children who have heart disorders.

Reading materials

Books for parents

  • “Heart Defects in Children: What Every Parent Should Know,” by Cheryl J. Wild
  • “Heart of a Child,” by Catherine A. Neill, Edward B. Clark and Carleen Clark
  • “It’s My Heart,” by Children’s Heart Foundation
  • “The Heart of a Mother,” by Anna Marie Jaworski and Judy Norwood

Books for children with heart defects

  • “Blue Lewis and Sasha the Great,” by Carol Donsky Newell
  • “Matty’s Heart,” by C.J. Hribal
  • “Nathan’s Special Heart,” by Jessica Ennis (available as a virtual book)
  • “Pump the Bear,” by Gisella Olivo Whittington

Books for siblings

  • “Cardiac Kids,” by Vicci Elder
  • “My Brother Needs an Operation,” by Anna Marie Jaworski & Sarah Lualdi Moran
  • “When Molly was in the Hospital,” by Debbie Duncan

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