In our efforts to provide HLHS families additional support and resources, we’ve compiled the following list from across the nation that you may find useful now, or at some point in your HLHS journey. If you see an organization you would like to learn more about, click on the organization’s name to be directed to their website.
Facebook Support Groups:
Linked by Heart Regional Facebook Groups - Facebook groups led by Linked by Heart Regional Coordinators to connect families affected by HLHS.
Sisters by Heart - a dedicated site for HLHS families to keep up with special announcements, blog posts, nominate expecting HLHS families and more.
HLHS Parent Advisory Group - NPC-QIC - a JCCHD Initiative - a space to give input and feedback to the joint collaboration to help improve interstage outcomes and care for HLHS infants.
Heart Mamas - a support page for all CHD mamas (and a few dads too!)
Hypoplastic Left Heart Syndrome - a place to post and share all things HLHS.
HLHS Hope - a group that offers support, education, understanding and spiritual uplifting for families with Hypoplastic Left or Right Heart Syndrome.
Adult CHDers answering questions of Parents - a place for parents of CHD children to ask questions and receive feedback from adult CHDers. .
HLHS Organizations and Resources:
Sisters by Heart - the parent to Linked by Heart, a national non-profit organization created by a group of heart moms who came together during their CHD journey. Knowing the challenges and difficulties faced upon diagnosis, and more so, upon bringing our HLHS fighters into this world, they created Sisters by Heart to reach out and support parents of the newly diagnosed. A major aspect of their mission is to send care packages to new mothers (and fathers) who are at the beginning of their journey. They also provide families resources and understanding while their child undergoes care and treatment from birth throughout recovery.
HLHS Parent Advisory Group - NPC-QIC - a JCCHD Initiative - Among many benefits of the JCCHD is the parent arm, which forms a collaborative between doctors, nurses, social workers and dieticians. This Collaborative, titled the NPC-QIC (National Pediatric Cardiology Quality Improvement Collaborative) has but one purpose - to improve the health of children born with congenital heart defects. The Collaborative currently has participants representing over 40 different hospitals from around the country and a group of HLHS parents who share information and experiences to improve the way forward for our children.
CHD Organizations and Resources:
U.S. News and World Rankings of Cardiac Units Nationwide - A listing of the top 50 pediatric cardiac surgical centers including details supporting the rankings.
CHD Video Series by Children's Hospital of Philadelphia - Video resources for families and healthcare professionals.
Children's Heart Foundation - strives to bring health, hope and happiness to children impacted by congenital heart defects. The CHF funds the most promising research to advance the diagnosis, treatment and prevention of congenital heart defects.
Adult Congenital Heart Association - seeks to improve the quality of life and extend the lives of adults with congenital heart defects. Through education, outreach, advocacy, and promotion of research, ACHA serves and supports the more than one million adults with congenital heart defects, their families and the medical community.
Congenital Heart Information Network - national organization that provides reliable information, advocacy, support services, financial assistance and resources to people affected by CHDs. Also includes information on Spencer’s Fund, which provides help to families affected by CHDs by providing financial assistance with expenses incurred during extended or far from home clinic appointments and hospital stays.
The Whole Hearts Foundation - the WHF’s mission is to share God’s love by providing education, support, connections, and innovation for the families of a child living with pediatric congenital heart disease - without boundaries of faith, culture, or economic standing.
Mended Little Hearts - Educates the public, offers emotional support, pre- and post-surgical support to families and provides care bags to area hospitals for families during their extended stay. Helps network families with parent-matching programs to connect families facing similar CHD diagnoses
It's My Heart - exists to provide support and education for those affected by Congenital and Pediatric Acquired Heart Defects. Through awareness, resources, and education, It’s My Heart creates alliances and networks among families, groups, hospitals, and the community.
The Erika Kate Foundation - provides short-term assistance to families in the midst of medical crisis, working with social workers in pediatric heart centers nationwide to bridge the gap for those whose short-term needs exceed available resources.
Jack of All Hearts - raises funds for cardiothoracic research, assists families in need of moral support, and provides financial resources to those in need due to outstanding medical bills related to pediatric cardiac care.
Little Hearts - provides support to CHD families by way of an annual member picnic, awareness information & suggestions, awareness products, discussion board,fundraising ideas, meetings, news email group, newsletterand parent matching program.
Beads of Courage - Through the use of strings of beads representing medical procedures, Beads of Courage helps children with serious illnesses record, tell and own their stories of survival.
Icing Smiles - Provides custom celebration cakes and other treats to families impacted by critical illness of a child (provides cakes to both the affected child and siblings).
Karis Heart Foundation - a faith based organization providing a wide range of personal, financial, and social resources to families who are currently experiencing a healthcare crisis.
James Project - a community-based organization focused on improving communication in healthcare with the goal of saving children's lives and clinician's livelihoods. James’s Project has assisted many CHD families in their journeys when the need arises. The founder, Mary Ellen Mannix is a CHD mom and is familiar with our struggles as CHD parents.
Eliana Grace Foundation- providing financial, logistical and emotional support to families facing a complex Congenital Heart Defect (CHD) who travel to Brigham and Woman’s Hospital and Children’s Hospital Boston for Fetal Cardiac Intervention and follow up care.
CHD Coalition - nonprofit organization whose sole purpose is to improve the quality of life for all affected by congenital heart defects (CHDs).
Saving Tiny Hearts - directly funds research for Congenital Heart Defects. Since 2005, over 1 million dollars has been raised.
Camp Taylor - provides free medically supervised camps for children with CHD.
CongenitalHeartDefects.com - over 100 pages of free information for the CHD community.
Baby Hearts Press - resources specifically for the CHD community.
Preemptive Love Coalition - 501(c)3 nonprofit that provides lifesaving heart surgeries for children in Iraq born with CHD.
Heartfelt Couture – creates personalized hospital gowns and prayer pillows for children / recovering from open-heart surgery and hospitalizations.
Heart Heroes Capes - providing super hero capes to children with congenital heart defects.
Caleb’s Comfort Project -Caleb's baskets are made especially for those that have recently lost a child to Hypoplastic Left Heart Syndrome. Caleb’s family was a Sisters by Heart recipient and his mom created this project shortly after his passing in his memory.
Linked by Heart: HLHS Angels - facebook group created by Sisters by Heart to offer a private setting to connect with other parents whose HLHS child has passed away.
Mommas of Heart Angels - a facebook group for mom's who lost a CHD warrior to chat with each other. This group is private and you may request an invite to join.
Sadie Rose Foundation - an official non-profit 501(c)3 organization offering support to families and individuals who have experienced the death of a child, including through pregnancy loss and miscarriage.
The Compassionate Friends - provides highly personal comfort, hope, and support to every family experiencing the death of a son or a daughter, a brother or a sister, or a grandchild, and helps others better assist the grieving family.
Heart Defects in Children
100,000 Hearts: A Surgeon's Memoir
Zip-Line: Children's book written for young boys and girls that had open heart surgery and are left with a "zip-line".
Walk on Water: The Miracle of Saving Children's Lives
King of Hearts: The True Story of the Maverick Who Pioneered Open Heart Surgery
Let us know!
If there is a resource you’ve found particularly helpful to you not appearing above, please email us at email@example.com.