In the roller-coaster life of a child with a heart defect, sometimes parents need someone to turn to when they want to have a conversation with somebody else who understands what their daily life is like. We’ve all been there – the sympathetic nodding of the head, the jumbled response, the pause in conversation – When all a parent wants to say is I’m frustrated because my child …… and I don’t know what this means. It’s the unknown, the unpredictability, and the everyday challenge of living a normal life. I’ve spent some time researching support groups and I’ve listed the ones I think have something to offer to everyone.
Mended Little Hearts
Mended Little Hearts partners with hospitals to offer resources to families diagnosed with a congenital heart defect and provides support to families by trained volunteers through Hospital Visiting, Internet and Telephone Visiting, Group Meetings and Social Events.
http://www.mendedlittlehearts.org/
The Congenital Heart Information Network
Mended Little Hearts partners with hospitals to offer resources to families diagnosed with a congenital heart defect and provides support to families by trained volunteers through Hospital Visiting, Internet and Telephone Visiting, Group Meetings and Social Events.
http://www.mendedlittlehearts.org/
CHIN has a very nice Community section where you can communicate with others in the Chat Room during regularly scheduled discussions, join an Online Support group, visit the Family Room to read other families’ stories and share yours, see the Portrait Gallery with photos and stories of members, and visit the Memorial Garden which was created to honor the "brave warriors" who are no longer with us. Visit their Resources page for a list of Book Reviews and links to local, regional and national support groups.
Saving Little Hearts
Saving Little Hearts is an organization that is dedicated to helping children with congenital heart defects and their families by providing emotional assistance and educational information primarily through the distribution of Care Packages to children undergoing heart surgery.
Little Hearts, the Children’s Heart Society, and Heart Defects Families Association
These non-profit, volunteer based organizations provide support groups to parents and parent-matching programs.
Whether you decide to join a group and become an active member or just drop in from time to time to visit the resource pages, I hope you find comfort in the knowledge that you are not alone in your struggle. There is a community of families, volunteers, and dedicated medical professionals who are there to support, educate, inform, and connect with you in a very positive way.
