Congenital Aneurysm

My18 month old daughter has an ascending aortic aneurysm with a z-score of 5.9  (the measurement is 2.2 cm).  This has grown steadily since birth.  Originally, we had a diagnosis of aortic stenosis, and we were not advised of the diliation of her aorta until she was 4 months old.  As she has grown, it has become evident that her aortic valve is functionally bicusbid.  She currently takes 1ml of propranalol solution twice a day.  I hope that is enough background information.

My question is at what point do we need to be seeking out a surgeon?  I want to have time to find the right surgeon before she gets to the point that sugery is an imparitive.  Also, does this have any impact on getting a diagnosis of Marfan's Syndrome under the new diagnostic criteria?

[grendslori]

the best thing for you to do is to talk to her pediatric cardiologist about who he recommends as a surgeon and he will be the one who will refer you to the surgeon. He would also have to be the one to determine if your daughter actually has marfans. take care

[seriouslaughter]

The issue is that an aneurysm of her size in a child her age is EXTREMELY rare.  I don't want to limit my choices to the local surgeons only.  That's why I want to find out who has the most experience and the best outcomes.  I thought I was posting on the expert site, but I realize that I posted in the general community, sorry.

[grendslori]

There is certainly nothing wrong with you asking your questions on here. Many of us have a lot of experience with CHD. My daughter also had a very rare and serious form of heart disease and our PC always recommended the best place to take her for her care. We have been to Great Ormond Street Children's Hospital in London as well as going to Texas Children's Hospital in Houston even to the National Institutes of Health because of the research facilities there. We were forced to travel, sometimes great distances. The point is, that especially if your daughter's case is a rare one, they will send her to the best surgeons to take care of her.