Family Support

Families are often overwhelmed and in need of reliable information after receiving the news of a CHD or Down Syndrome diagnosis.  There are community resources available across the country as well as online resources and support groups.   Upon searching Facebook and Instagram, you may find a group in your area that can provide things such as emotional support, experience, guidance and friendship.  We urge you to explore these things as a possible resource for your family when the time is right. 

In addition, there are several national organizations providing reliable medical information that may be useful for those navigating this topic or for those interested in learning more about CHD and Down Syndrome.  We have linked some trusted websites for these purposes.

Local Partners

World of Broken Hearts

World Of Broken Hearts focuses on congenital heart defect awareness by showcasing their journey through photographs and storytelling.  World of Broken Hearts gives the gift of high-quality photographs and family portraits families can cherish for a lifetime. Their mission is to be able to raise much-needed congenital heart defect and organ donation awareness that can lead to much-needed CHD funding.  We want to be able to travel all over children's hospitals in the U.S. and tell all these profound stories. 

Best Buddies Tennessee

Best Buddies is an international organization dedicated to inclusion for those with intellectual or physical disabilities through peer and school-based friendship programs, leadership development and a jobs program.  They are located in many states across the country and are an excellent resource for any age.

Down Syndrome Association of Middle Tennessee

Celebrating and supporting people with Down Syndrome and their families.

High Hopes Development Center

High Hopes Development Center was created out of necessity by five families in Middle Tennessee. These community members envisioned a place where children with special needs could receive a jump start in early education with therapeutic interventions on-site for those who needed it.

What they created was an inclusive environment, where children with special needs play, learn, and grow alongside their friends that are typically-developing.

This inclusive education experience is bolstered by an on-site outpatient clinic providing four branches of pediatric therapy.

Gigi’s Playhouse

GiGi’s Playhouse Nashville is proud to become the 16th Playhouse worldwide. GiGi's Playhouse Nashville provides free programs that are educational and therapeutic in nature to individuals with Down syndrome from birth through adulthood, their families and the community. 

Monroe Carell Jr. Children’s Hospital at Vanderbilt

Monroe Carell Jr. Children’s Hospital at Vanderbilt is one of the nation’s leading children’s hospitals. Their team of experts in 30 pediatric and surgical specialties is ready for any health issue your child may face – from the simple to complex.

National Resources

National Down Syndrome Society

Another long standing organization dedicated to improving and celebrating the lives of those with Down Syndrome through work, involvement and advocacy. 

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Down Syndrome Diagnosis Network

DSDN supports parents who have recently received a diagnosis for their child or unborn baby by connecting them to other families touched by Down syndrome.

You are not alone.  Join one of our many private rockin' mom ™ and dad online groups for new and expectant parents.

 

American Heart Association

Go to Health Topics, then choose Congenital Heart Defects provides information on everything from symptoms and diagnosis to prevention and treatment. 

Center for Disease Control and Prevention

Data on statistics and research, information on specific heart defects – explanations and treatments

Adult Congenital Heart Association

The Adult Congenital Heart Association is a national organization providing education and support services for adults with congenital heart defects and their families. They are focused on the long-term needs of adults with congenital heart defects and providing education, outreach, and advocacy.

American Academy of Pediatrics

The American Academy of Pediatrics (AAP) is an organization of 60,000 pediatricians dedicated to the physical, mental, and social health of infants, children, adolescents and young adults. The AAP provides recommendations and clinical guidance regarding a number of topics in pediatric health care, including answering questions pediatricians may have about pulse oximetry screening for critical congenital heart defects.

Children’s Heart Foundation

The Children’s Heart Foundation works toward understanding congenital heart defects by funding research to advance the diagnosis, treatment and prevention of congenital heart defects.

Congenital Heart Public Health Consortium

CDC provides technical assistance to the Congenital Heart Public Health Consortium, a unique collaboration that brings together families, experts, and organizations to address congenital heart defects through surveillance, research, education, health promotion, and policy development.

Cove Point Foundation: Congenital Heart Disease

This website is an in-depth resource on congenital heart defects. It offers information about specific types of congenital heart defects, including descriptions of the defects, treatments, and links to other resources.

Kids With Heart

Kid’s With Heart is an organization devoted to providing support for children and families affected by congenital heart defects. It provides parent-matching, online support, bereavement services, awareness products, and educational resources.

Little Hearts, Inc.

Little Hearts, Inc. is a national organization providing emotional support, education, resources, parent networking, and hope to families affected by congenital heart defects. Support services consist of parent matching, discussion board, quarterly newsletters, and “Stories of Hope”. Membership consists of families who have or are expecting a child with a CHD.

Mended Little Hearts

Mended Little Hearts is part of the Mended Hearts organization and was established in 2004. They provide support to children with congenital heart defects and their families. Their website provides ways for families of “the littlest heart patients of all” to come together through support group meetings and visiting programs.

National Heart Lung and Blood Institute

The National Heart, Lung, and Blood Institute features an overview on congenital heart defects. It includes information on how the heart works, types of defects, causes, signs and symptoms, diagnosis, treatment, issues related to living with a congenital heart defect, and clinical trials.

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Pediatric Congenital Heart Association

The Pediatric Congenital Heart Association’s mission is to “Conquer Congenital Heart Disease.” They were founded with the key purpose of being the resounding voice of the pediatric patient population. Through collaboration in education, research and advocacy, they work passionately to reduce the impact of congenital heart disease while striving to realize a world free from it


Disclaimer: Linking to a non-federal site does not constitute an endorsement by The Brett Boyer Foundation or any of its employees of or the information and products presented on the site.