Having a child with complex heart disease can be stressful for the entire family. There is support available for families, children and young adults.
Self Care for Parents and Caregivers
One of the best ways a parent or caregiver can support is a child’s development is to take care of yourself as well
- Get plenty of rest and sleep when you are able to
- Eat a healthy, well balanced diet and drink lots of water
- Try to get some physical activity every day (go for a walk, exercise, yoga)
- Spend some time with positive support people in your life
- Journal about your experiences
Resources for Hospitalized Families
- Cardiac Social Worker: Denisse Valor, LCSW
- Child Life Specialist: Becky Pickard, M.S., CLSS
- Cardiac Psychologist: Dr. Silvia Sommers, PysD
- Chaplin/Pastor (Family Centered Care Services)
Sisters by Heart
An organization dedicated to supporting families of babies with Hypoplastic Left Heart Syndrome (HLHS), from diagnosis and throughout life. Sisters by Heart sends care packages to parents/caregivers of children newly diagnosed with HLHS and allows families to connect as well as provides resources and education.
Mended Little Hearts
Mended Little Hearts is a local and national organization dedicated to supporting children and families with congenital heart disease (CHD). The website allows parents to connect with other heart families and provides information about health and wellness as a summary of recent research studies.
Adult Congenital Heart Association (ACHA)
The Adult Congenital Heart Association (ACHA) is resource of newsletters, care guidelines, support groups, and maps to locate adult congenital programs throughout the US.
Big Hearts to Little Hearts
Big Hearts to Little Hearts’ mission is to lengthen and improve the lives of the littlest heart patients by funding critical research and programs.
Pregnancy is a time of anticipation, excitement, and, for many new parents, uncertainty. This section contains some guidelines to help you with the most important of these preparations.
- Provides family and individual counseling. Locations in West Palm Beach, Miami, and Fort Myers area.
Jewish Community Services of South Florida
- Provides counseling services and psychoeducational testing. Services available in English, Spanish, and Creole.