My daughter was born at 32 weeks send had an open heart valve every time she breathed her lungs would fill with blood. They gave her the first every medicine ever made and it closed it up for her but if it didn't work she would of had surgery. She now 6 years old..
Not the same condition but we found out at our 20 week scan that our little girl has TGA(heart ventricles are wrong way round)and he will need open heart surgery a couple days after shes born..very high success rate too so we are very positive about it...its scary news to get knowing something is wrong..i would suggest looking for groups on parents of babies with heart conditions on facebook if your on there...i found a great group with lots of parents that have babies with the same condition as my little one,they can give lots of advice and its great and reassuring hearing others experiences...best of luck x