Anybody have kiddos with cardiac issues?

[2boyzmama]

Connor was just diagnosed with VCFS. He has pretty much a textbook case of it, but what delayed diagnosis is he doesn't appear to have any cardiac issues. Now that we know he has the syndrome (microarray showed the 22q11.2 deletion, so we're positive this is the right diagnosis) we're seeing a cardiologist next week.

I've been doing research on the common heart defects associated with VCFS so that I don't go blindly into this cardiologist appt. But everything seems so bad, I keep thinking there's no way he has anything like that and we wouldn't know it by now.

Does anyone have a kiddo with a heart condition? What is it, how old was your child when it was diagnosed, and what kind of treatment/management is there? Cardiac issues has been one thing I haven't had to research all this time because he had none...he might still not have any issues, but they're so common with this syndrome that we got an immediate referral.

[irangel]

My dd2 has had cardiac issues all her life but mostly secondary to her pulmonary problems (working too hard to breathe creates stress on the heart and sends her into congestive heart failure). A good friend of ours has a daughter that's 20mos with aortic stenosis and coarctation and she'd be more than happy to talk with you if they do find something of this nature with Connor. They've had at least one history-making surgery with their daughter when she was only 2lbs and have sense had several caths and balloonings, stalling until they need to do more major surgery.

[mama-a-llama]

Ds has a coarctation and VSD, both surgically repaired at 1 month old and 2 yrs old, respectively. Dx was at 1 mo old when he pretty much crashed b/c of the coarc. FWIW, his cardiologist said sometimes people go a long time w/o being dxed with coarcs.