Membership Requirements
Only Parents or legal guardians of children (in utero through adult) diagnosed with any an HRHS diagnosis, and parents of a child who died of complications from an HRHS condition, and adult survivors of HRHS conditions and their spouses may join Hypoplastic Right Hearts.
Required Information
- Your full name - first and last
- Your child's name or indicate if you are a survivor
- Child or survivor birth date; day/month/year, or due date if expecting
- Diagnosis (see list below)
- Surgeries / Treatments to date
- Hospital where treated
- State (or country if outside of US) where you reside
Apply Now: Membership Form link
You should receive a response within one week (usually much sooner) of your application.
Qualified HRHS Diagnoses
- Tricuspid Atresia with or without TGA
- Pulmonary Atresia with or without IVS
- Ebsteins Anomaly or Abnormality
- Double Outlet Right Ventricle (DORV) with or without TGA
- Double Inlet Left Ventricle (DILV) with or without TGA
- AV Canal defect leading to Fontan 3-stage treatment dependent on functioning left vent
- Pulmonary or Tricuspid or both or any combination of the above defects
Why the Membership Restrictions?
We are restrictive to allow open discussions about surgical procedures and outcomes that are common to the majority of members. We also restrict the forums to primary care givers because extended family is not always welcome into the private discussions of parents. However, we have information for grandparents, friends, and extended family. As time and resources permit, we will add an FAQ (Frequently Asked Questions) page for nonmembers.
