Congenital Heart Disease Support Group

Hello everyone,

I'm a newbie to this whole issue of CHD. My young adult children have PCD (primary ciliary dyskinesia) with heterotaxy, specifically polysplenia. There are new articles, posted to the home page, about the connection between PCD and CHD. In addition, their father, who is not in communication with the family, has recently been diagnosed with CHD described to us only as "right coronary artery arises between the aorta and the pulmonary artery." This diagnosis came after his brother died suddenly from the same defect at age 44.

Here is my question--with vascular anomalies, is an echo or a CT scan enough to rule out CHD? I'm worried about my son, especially, since at age 21 he is on 3 drugs for hypertension, but has never had a thorough cardiac workup because a recent lung CT was normal. We just completed a rigorous workup for an extremely rare adrenal gland tumor to explain his bp issues (which was negative), but no similarly rigorous cardiac workup has been done. I am very concerned about this, but don't know whether what has been done already is enough. What should we be requesting for a CHD evaluation? Are echos and CTs sufficient for diagnosing vascular issues?

Thanks so much--I feel like I'm back to the spot we were at before their diagnosis with PCD--scared, confused, and directionless. Any help will be greatly appreciated!
Posted on 06/12/07, 12:06 pm