Diagnosis

[Carinne]

We had our fetal echocardiogram yesterday and recieved the diagnosis of Pulmonary Atresia with VSD. Has anyone else had this diagnosis? How is your child doing now? In our case the main pulmonary artery is completely absent, and will need to be replaced several times throughout our child's life, as it grows and the replacement artery doesn't. How much will all of these surgeries affect how our child grows and interacts with others? Also, we found out we will not be able to hold our baby at all before they take it to the NICU. This is very scary to me- is it as bad as it seems? How soon are you able to see your baby after birth? Sorry for all the questions- any help or advice is appreciated!

[Cyndlouwho]

My son has truncus and not pulmonary atresia, so I can't totally answer that part. Sounds like it is similar in that he will also need to have surgery to replace the conduit as he grows. He's only had the first surgery so far. The fetal echo with him made it look like he had either truncus or aortic atresia, so the treatment right after birth I'm sure is pretty much the same as with pulmonary atresia. I didn't get to hold him after he was born. At the University Hospital, we had one of the birthing rooms with a window that goes directly to the NICU. Right after he was born they handed him through the window so they could start the medication as soon as possible. My husband watched as much as he could through the window until they moved us to a different room. Before we went to the room, they did take us into the NICU where we could see him, so it really wasn't all that long before we saw him. I think it makes it a little easier knowing ahead of time that you likely won't see your baby right after birth. It's still not ideal, but at least you will be prepared and can know that it won't be long before you do see the baby.

Hope this helps at least a little. :)

[outlaw]

My daughter is 14 and has truncus but also has two artificial valves. The Aortic is a mechanical valve and the pulmonary is a pig valve. She leads a very normal life. She is on the high school swim team and has been able to do almost anything she wants to do. With the swim team she swims short distances and when she is tired during practice she sits out. She has tried snowboarding, dance classes, soccer, etc. We did not know that she had a heart defect before she was born so I can not answer to that. I hope this helps. If I can answer any more questions just ask.