Emotional Support

The following websites are NOT owned by or affiliated with Hypoplastic Right Hearts. We share them with you as a courtesy, and we cannot guarantee the accuracy of the information or the status of the websites. Sites denoted with * have provided direct services to our members and are preferred sites. ALWAYS contact your pediatric cardiologist and/or cardio thoracic surgeon/physician when seeking medical advice.

 

Baby Hearts Press

This site offers a variety of books for the parents, child and siblings of a heart child. There is also an awareness product store and links for more information including bereavement resources and advocacy links.

Band-Aids and Blackboards

This site deals with all the issues surrounding going to school with medical special needs. It helps kids, teens and parents deal with the social issues of being “different” It has a talking frog to guide you through the site. 

Bereaved Parents of the USA

This is a place for parents, grandparents, siblings who have lost a child to go for support, information and resources. The national organization has local chapters and a lending library. There is no fee to join. 

*California Heart Connection

This is a free California based support group that has events throughout the California area as well as online support for products, services and issues pertaining to CHD. There is a section that has downloadable handouts for parents including, what to ask at doctor’s appointments, insurance company issues and much more. 

*Care Pages

This free site gives personalized WebPages to families living with medical issues. The sites give families a way to keep in touch while their children are having issues or procedures and to update their progress once they are home. The pages include a photo album and guest book. 

*Caring Bridge

This free site gives personalized WebPages to families living with medical issues. The sites give families a way to keep in touch while their children are having issues or procedures and to update their progress once they are home. The pages include a photo album and guest book. 

CHD Families

This online support group is for all types of CHD. It is for any member of a family dealing with CHD and is worldwide. There is a family matching database, photo album and chat function. There is no fee to join but you must register. 

Child Bereavement Trust

This site is based in the U.K. and is a source of information and emotional support for anyone who is grieving the loss of a loved one. It has a lot of information to educate and promote public awareness as well. 

Children’s Hospital of Winnipeg

This site has an extensive list of printable handouts that cover a wide variety of emotional issues surrounding CHD both for parents and children. 

Compassionate Friends

This is a support network for those who have lost a child, including siblings. It gives people who have been bereft longer a chance to help those who are new to the group and share their experiences. The group also hosts local chapters and many events geared towards remembrance and healing.