Aortic Stenosis ~mama~ 4 kids; Susanville, CA, United States 1556 posts
Feb 22nd '13

On the 5th I brought my daughter to a cardiologist to check on a heart murmur and found out she has Aortic Stenosis. He wanted to see her again in 3 weeks (today) with the hopes that she would be healthier since she had RSV at the time so she wouldn't freak out so bad.

So on the 5th I was told it's not so bad (as far as heart problems go) and today I was told it is mild to moderate but he can't say that it is worse and changed his mind about going every six months to every month.

Obviously I asked a million questions and tried to understand how bad this really is and why he changed to monthly but is telling me that it's not much different from 3 weeks ago and I shouldn't stress over it because "if I thought she was going to die I wouldn't be sending you home" He kind of threw in there that he had shown a few colleagues so maybe they saw something he missed?

He is a really good doctor and answered all of my questions, but I still feel like he is just trying to make me feel better by not telling me how bad it really is?
I've been trying to read about it and it's just freaking me out everything I find is negative and talks about how for the rest of her life she will need medicine and different treatments or surgeries and that her heart can just stop at any moment but her doctor told me after her surgery she would have a normal life and everything will be perfect :?

I don't know if I'm just preparing myself for the worst and not wanting to believe that it's not that bad or I genuinely feel lied to, if that makes sense?

So I was just wondering if any other parents are going/have gone though this?