| I haven't, but these sites offer online support and information and a sense of community for people who are dealing with congenital heart problems. They may be able to offer specific advice or direction. http://www.tchin.org/ http://www.pediheart.org/ http://www.congenitalheartdefects.com/ This last address is a community support page from the tchin site. It gets special mention because of its poem. http://www.tchin.org/support/index.htm That episode about having been approved and getting a check and then getting told it had ot be repaid sounds like it might be worth sharing with any local media 'watchdog' sorts of groups. It's sometimes amazing to watch how bureaucratic communication can become ever so much more clear when there are cameras, publicity and possible lawyers. Most of those support sites have links to insurance info, or people that can be asked about those issues; or better yet, people who have probably got good insight into the problems faced. All I could suggest would be contacting social workers, maybe ones known to work in hospitals. Programs differ by state. I am not sure if there is any federal regulations specific to what might be called birth defects, or specifically heart problems-- because those can be in a class by themselves in terms of medical care costs which will be obligatory for the person who has the problem. Can he get any coverage at all through his father's insurance? (even for recommended tests, like an angiogram since he's had a stroke this is important). Your husband's human resources people-- if he works at a place that has a human resources person or department should be able to figure his policy options out. NORD might also have resources but their site isn't as easy to negotiate or as supportive in general. Nord is a national organization for rare diseases. They are especially important for resources in case your son or family members need 'orphan' drugs which don't make much money for the pharmaceutical companies that make them. | 
