Hi Amber, my son Ryan, 13, is due to have a valve replaced with the melody valve on Jul. 28, I'll be happy to write you after it's done. His cath pre-visit appointment is next Tuesday, and I'm hoping to learn a lot more about the melody valve. Ryan was dx with pulmonary hypertension last year, so open heart surgery is pretty much out of the question at this point, but he's needed a valve replacement for a couple of years now. The only issue is whether or not the conduit, in which they would place the valve, is large enough to accomodate it. Ryan was born with tetralogy of fallot with pulmonary atresia and had his major corrective surgeries by age of 18mos, so the conduit is pretty tiny. Anyway, I've searched, just like you, for anyone who has had any experience with the melody valve, with no luck. I will also give you my email in case I forget to post here, with 4 kids driving me nuts over the summer, that's a real possibility. MMicha9739@aol.com is my address and my name is Melissa.

THANK YOU! I appreciate your comment so much! I look forward to hearing from you after your son's surgery and I will be praying everything goes well! If you don't mind my asking, where is the procedure being gone? We live in Missouri and the closest place we have found that does it is Columbus, Ohio.
My husband was born with many birth defects. These include tetrology of fallot with pulmonary atresia and has also been diagnosed with pulmonary hypertension. Sounds like our guys have a lot in common. My husband has had 3 open heart surgeries and they thought a 4th would be too risky so that's why there are looking in to the Melody Valve. We also have the same problem. Phillip's last valve replacement was done when he was 10. He his now 24, almost 25 and they aren't sure that his conduit is large enough for the Melody Valve. I look forward to hearing from you again!