My 5yr old daughter has just been diagnosed with truncus arteriosus, VSD, leaking heart valve and constricted blood flow into her lungs. (We discovered her condition after an unrelated accident at home).
She was undiagnosed for so long because the lung complication prevents her from appearing very cyanotic. We have also been told that this makes her inoperable. She will need a heart and lung transplant in her teens. Is there anyone who is in a similar position? contact me here.
Sorry to be replying so long after your post. I'm just getting started with this Forum, and am trying to review posts that deserve an answer. The website: http://www.tchin.org/ is an excellent source for parents of children with all varieties of congenital heart disease. They can tie you into support groups where you can almost certainly meet parents of children with similar problems. Dr R
Hi, I too have a 5 yr. old daughter with Truncus Arteriosus, VSD, and VCFS. I run a support group on line in Yahoo. We have 71 members thus far. If you would like to join us the address is:
http://clubs.yahoo.com/clubs/ourtruncusarteriosuskids I hope to see you there. Christine, mom to Carly with truncus