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.

Thanks so much Amygdala.Yes my son does have coverage under dads insurance and always has.They have been great.They have paid unbelievable amounts toward Adams expenses but they can only do so much.Unfortunately sometimes even the smallest remaining balance after insurance pays can be a hardship when there is also medicine to buy and gas for trips to out of town doctors and physical therapy and such.I had no idea just how much the CIDC program actually helped until we no longer had the help and a year later the after shock starting hitting with all the unpaid medical bills on top of buying the necessary meds and all.And during this time my daughter was diagnosed with her condition also.It just put us in a desperate place.I did intend to go by the social workers office while we at Childrens Hosp. Monday but after trying to track down the Neurologist's office who had moved out of the hosp to another building I completely forgot.Their office is the office that originally got Adam approved for the program to begin with.But since then they have devised a waiting list policy and it is backed up 5 yrs from what they told me.The beaurocracy is just unreal.They first tell he has to qualify for the waiting list either by income or by meeting another spin down amt.which we met well above what we needed to.Then we have to apply him for the state organized CHIP ins. but had we accepted we had to drop medical coverage thru DH's employer( NO WAY).So we refused the program and I had to send a letter explaining why to the state office.I did this.Then after about 4 or 5 mths I just recieved a letter stating that Adam was accepted on the waiting list.(This does not mean he is in the program just on the waiting list).I call the office handleing his case to see what his status is on the list and I 'm told because they have not recieved a confirmation from the state office of my refusal to accept the CHIP program that he actually isn't even on the waiting list until they get that confirmation.I then call the state office to explain what I need and I'm told they will get one to me .Well that's been two weeks and I'm still waiting.On top of that by the time I got the actuall letter telling me he was on the waiting list the dates of acceptance were such that it was going to be void in a matter of 3 or 4 mths.THen I have to start the whole process over.First by applying my son for Medicaid which I don't even want but they tell me I have to in order to apply him for the CIDC program.Which is a total waste of time because in 5 yrs he has never qualified.Confused yet?I'm sorry if I sound bitter.But can't help it.I cry, I pray, and then I pray somemore.My DH is a hard working man and he is carrying a huge load.And I feel helpless!The sights you offered I will definitely check out.Any info is a step in the right direction.I can't just give up because I am my son's voice.But I never wanted to be a crusader either.Thanks so very much for letting me vent.Shelia

P.s. I was just curious I have read many posts you have written and you seem to have so much knowledge of the medical field.Do you mind if I ask what your actual field is.Thanks