There are many resources online to help you learn more about CHD, make decisions, care for your child, get support, and more.

For a general resource, we recommend reviewing the Mended Little Heart Guide. This ultimate guide for CHD families is full of practical information and resources for every step of your CHD care journey – from the initial diagnosis through the transition to adult care. It also talks about how parents may feel at different stages of caring for their child with CHD.

Here’s a partial list of other resources to help you get started with research on your CHD care journey. (If you know of a great resource that could help other CHD families and don’t see it on the list, please tell us about it.)

What are you looking for?

General/Healthcare Information and Resources

California Heart Connection blank forms

  • Including forms for emergency contacts, follow-up care, when to call the doctor or 911, school and activities, and more

Mended Little Heart Guide blank forms

  • Including forms for medical contact information, medications, appointments, tests and procedures, feeding your baby, a letter to family and friends, and more

Conquering CHD Hospital Navigator
Created specifically for parents, this website helps you understand what types of specialized programs a hospital offers, the number of surgeries broken down by complexity, as well as if the survival for the surgeries at a hospital are at expected levels. It also includes guidance about how to interpret the information provided. At this point in time, not all hospitals have contributed their information to this site.

Society of Thoracic Surgeons Public Reporting
This website lists the outcomes of pediatric cardiac surgeries as they are reported by participating hospitals. Not all hospitals report their pediatric cardiac surgery outcomes, but you may still find information about a hospital on this site that is useful to you.

U.S. News and World Report Annual List of Best Children’s Hospitals for Cardiology and Heart Surgery

This ranking system attempts to rate measures typically associated with high-quality care and can help inform you. These rankings do tend to vary significantly year to year without obvious changes in the programs themselves. Often this is due to a change in how they determine the rankings, rather than an actual change at the hospital.

American Heart Association
This website has descriptions of many forms of CHD with diagrams. It also includes lists of resources for parents, informational materials, and the answers to frequently asked questions.

The Children’s Heart Foundation
This website has brief descriptions and simple diagrams for common types of CHD. The organization publishes a free “It’s My Heart” book for parents, which has information about common types of CHD and treatment options.

Conquering CHD
This organization is made up entirely of CHD patients, families, and medical experts. The website shares trusted resources with information about CHD and features an educational video series that addresses commonly asked questions from parents and families.

Cove Point Foundation
This website has information and diagrams about CHD, tests, and surgeries.

Heartpedia from Cincinnati Children’s Hospital
On this website you can download a free application that has images and detailed descriptions of 12 types of CHD. Through the application you can view images of a normal heart compared to a heart with a defect. You can also watch videos with an audio description of different heart defects and how they can be surgically repaired.

Got Transition
A website with tools, resources, and FAQs to help guide your child’s transition to adult-centered healthcare.

Adult Congenital Heart Association
An organization that provides information, support, services, activities, and more to individuals and families living with congenital heart disease.

Mended Little Heart Guide
See the guide’s “CHD: A Lifetime Journey” section for information and a transition checklist.

Emotional Support Resources and Understanding

Bright Heart Foundation (Tennessee)
A Tennessee organization that provides mental health care to those living with CHD, family members that care for those with CHD, and CHD healthcare providers.

CHD Coalition
Through this community of heart parents and caregivers, you can connect with other families who are on the CHD care journey – at local events and through an online network that extends throughout the United States.

Conquering CHD
Through social media, Conquering CHD offers open and closed forums to learn, chat, grow, and ask questions in a safe environment. This includes online groups for teens and adults, and a group en Español. Conquering CHD state chapters give knowledge, voice, and hope, and help directly meet the lifelong needs of patients with CHD and their families through awareness, knowledge, community, and research.

Family Voices of Tennessee (Tennessee)
For families in Tennessee, this organization can match you with a parent mentor and provide support, information, and resources from someone who is on a similar journey caring for a child with a special healthcare need.

Kids With Heart
A national organization that provides parent matching services for heart families. They also have a nationwide database of support groups and host online social media groups for support and information.

Linked by Heart
A support network for parents who have a child with HLHS, Linked by Heart fosters connections amongst the single ventricle community through regional, online support and by providing local resources to families. They strive to connect families with others in their area for local support and information.

Little Hearts
Support, education, resources, and hope for families affected by CHD. Membership consists of families nationwide who have or are expecting a child with CHD. Join for free to access their resources and connect with other parents.

Mended Little Hearts
An organization that can match you with a parent mentor through a local chapter in your area. They also host online discussion and social media groups.

Ollie Hinkle Heart Foundation (Missouri)
A foundation that provides free mental health support to heart families in the St. Louis region.

Sisters by Heart
This support group for parents who have a child with HLHS/single ventricle provides resources on CHD and sends care packages to parents at the beginning of their CHD care journey.

If you are experiencing a mental health emergency call 9-1-1 or go to the closest Emergency Room

National Suicide Prevention Hotline
1-800-273-TALK (800-273-8255)

National Parent Helpline
1-855-427-2736 (1-855-4A PARENT)

Crisis TEXT Line
Text “HOME” or “HELLO” to 741741

For moms who have recently delivered a child:

National Postpartum Depression Hotline
1-800-PPD-MOMS (800-773-6667)

Postpartum Support International Helpline
1-800-944-4773 or text 503-894-9453
Note: This is a “warmline” – leave a message and someone will call you back within 24 hours

Healthyminds Innovations
Free podcast-style lessons, and both seated and active meditations.

Some free guided meditation and mindfulness practices. Multi-session courses are available with a subscription.

Some free guided meditation and mindfulness practices, multi-session courses with subscription, and lots of variety to find the type of support that fits you.

Learn the essentials of meditation and mindfulness through a free basics course. Additional courses and resources are available with a subscription.

Bereaved Parents of the USA
A group that provides a space where grieving families can connect, share stories, and learn to rebuild their lives. The website includes information about support for siblings of those who have passed.

Compassionate Friends
A national nonprofit, self-help support organization that offers friendship, understanding, and hope to bereaved parents, grandparents, and siblings. There are no religious affiliations or membership fees.

Conquering CHD
A national nonprofit that has a list of resources and sources of support for those affected by grief, loss, or bereavement related to CHD. 

Ending a Wanted Pregnancy
A group of parents who have made the decision to end a pregnancy following a poor prenatal diagnosis or for maternal health reasons. They provide a forum where parents can find support and sympathy, grieve their losses together, and join a private support group.

Healing Heart
A resource for bereaved parents that is dedicated to providing grief support and services to parents who are suffering as the result of the loss of their child or children. They offer information on sibling grief, parent and grandparent grief, and infant loss.

A Heartbreaking Choice
A website and community that supports women who have made the heartbreaking choice to terminate a pregnancy. They also offer resources to help guide decision-making if you’re uncertain about ending a pregnancy.

The “Coping with Grief and Loss” area of this resource describes stages of grief and includes suggestions for managing and living through the grief.

Memory Jar
A resource that offers pages of ideas for planning memorial and funeral services to help parents, families, and friends memorialize their loved one.

Mended Hearts
A home for links to bereavement support groups and Facebook groups, as well as suggested books and reading.

MISS Foundation
A nonprofit international organization that provides immediate and ongoing support to grieving families. 

Modern Loss
A resource that includes writings from people who have experience with all kinds of loss. You can search for the type of loss you are experiencing (for example, pregnancy or child). It features very honest and clear discussions. 

National Hospice and Palliative Care Organization
This website includes helpful information about the grieving process and how to support loved ones who are grieving a loss.

The Solace Tree
Helping children and teens cope with the death of a loved one, the Solace Tree offers peer support groups for children, teens, and adults. Their support includes counseling and a children’s bereavement network.

Stephen Ministries
A Christian-based organization that provides grief support from parent mentors who have your experience, and have gone through a training program.

The Tears Foundation
Offers financial assistance for burial or cremation.

Camp Erin
Location: Multiple locations in the U.S.
Camp Erin is the largest national bereavement program for youth grieving the death of a significant person in their lives. Children and teens ages 6-17 attend a transformational weekend camp that combines traditional, fun camp activities with grief education and emotional support, free of charge for all families. Led by grief professionals and trained volunteers, Camp Erin provides a unique opportunity for youth to increase levels of hope, enhance self-esteem, and especially to learn that they are not alone.

Camp Kara
Location: Palo Alto, California
Camp Kara is a free bereavement camp for youth ages 6 – 17 who have experienced the death of a family member or friend. Children and teens come together for one weekend to participate in traditional fun camp activities and peer support focused grief activities. Campers are supported throughout the weekend by Kara’s highly trained volunteers and staff.

Información En Español

Estamos Conquistando CHD!
Grupo privado de Facebook para padres. Organizado por Conquering CHD.

Mini Guía de Mended Little Hearts en español
Versión más corta de la Guía Mended Little Hearts

Hermanas de corazón
Información para las familias de un niño recién diagnosticado con el tipo de cardiopatía congénita de un solo ventrículo

Conexión del Corazón de California
Ficha de información en español sobre temas diferentes relacionados con las enfermedades del corazón.

Fundación Cove Point
Recursos educativos en español para padres sobre el diagnóstico, las pruebas y cirugías

Asociación Estadounidense del Corazón
Descripciones y diagramas sobre diferentes tipos de cardiopatía congénita.