Regardless of how confident you are in your care team, sometimes you have questions or even doubts.
We have observed that parents often post highly technical medical questions to the various online message boards, asking other parents if they can speak to their child’s situation, and understandably so. Only another parent of a heart warrior can comprehend the fear and agony of a fellow heart warrior mama or papa, and currently other parents are the only people out there that can be accessed easily and who understand the significance of, say, a misdiagnosed PFO.
However, other parents are often not the best people to respond to such concerns. Their knowledge is typically limited to the experiences of their heart warrior, and thus the feedback is, at best, anecdotal. It is our belief that there exists a need for parents to have questions regarding their heart warrior answered by pediatric cardiac surgeons and cardiologists.
If we reach our funding goals, we intend to provide an interface whereby parents can get such questions answered quickly by the best pediatric cardiac surgeons and cardiologists in the United States- a specialized “Ask a Doctor” service of sorts, just for our heart warriors.
Parents fill out a questionnaire.
Based on the nature of the CCHD and the question, the appropriate doctor will be assigned and will review the questionnaire. Such doctor will:
- be a practicing physician in their specialty area;
- have at least 10 years’ experience; and
- will have at least a certain threshold number of substantially similar cases within the past 12 months as those presented by the parent.
Assigned doctor may request additional information.
Doctor will provide his opinion if he feels he has sufficient information.
The hope and intention is that such service will be offered without cost to members so that it can be accessed by all, regardless of ability to pay, however, a donation would be suggested.
If you would like to see SOS available for the benefit of the CCHD community, please donate here.