Support and Resources

Children holding a heart.


Caring for a baby or child with a serious heart problem, such as HLHS, can be challenging, but support is available. Tips for finding local and national HLHS support include:

  • Ask your child's cardiologist if he or she knows of any support groups in your area or other resources for your family.
  • Connect with the nonprofit organization Sisters by Heart to get more information on nationwide support groups and other helpful advice.
  • As your child grows, you may worry about activities in which he or she can safely participate. Talk with your child's cardiologist about which activities are best for your child. If some are off limits, encourage your child in other pursuits rather than focusing on what he or she can't do.
  • If other issues involving your child's health concern you, discuss them with your child's cardiologist, too — even if they don't seem directly related to HLHS.

Although every circumstance is different, many children with HLHS grow up to lead healthy lives.


Additional Mayo Clinic resources related to the Todd and Karen Wanek Family Program for HLHS include: