Oftentimes, the best person to understand and advise a parent who is in the trenches is another parent who has come out on the other side. We all become experts in our children’s particular CHD, and thus other children’s shared CHDs. Further, no one has a better perspective of the emotional roller coaster that ensues with a CHD diagnosis, nor has more empathy, than a fellow heart comrade.
We want to create a safe space to have those important conversations between families in which critical information can be communicated, and also shared to a larger community. Here we hope to create a members-only posting and messaging system that will easily allow families to connect and research specific issues with which they are grappling.
Our hope is, that with the participation of families, we can form groups based on doctors/hospitals providing treatment and specific CHDs/repairs.
Email firstname.lastname@example.org, if you would like to join such a community.