Bicuspid Valve with Aorta Dilation??

iVillage Member
Registered: 03-20-2006
Bicuspid Valve with Aorta Dilation??
5
Wed, 02-29-2012 - 9:59pm

Hi, My son was born with a bicuspid valve and aortic valve stenosis. We were told he would be monitored by a cardiologist yearly and would most likely need surgery at some point in his life, but probably not until he was in adulthood. The last visit we had was a couple of weeks ago. My son just turned 4 years old. The cardiologist informed us that my son appears to be falling in the minority and his aorta has already begun to dilate in one area. He is now preparing us that my son will most likely need heart surgery as a child. This has been very scary news. Does anyone have any experience with this condition? We are going for a second opinion in a couple of weeks to Miami Children's Hospital. Thanks in advance.

Community Leader
Registered: 01-29-2002
Wed, 02-29-2012 - 11:08pm

I've known lots of kids who had surgery for this.

iVillage Member
Registered: 04-08-2008
Thu, 03-01-2012 - 12:26am

My son was born with a unicuspid aortic valve and a large aortic aneurysm.

iVillage Member
Registered: 03-20-2006
Thu, 03-01-2012 - 7:40am
Cheri- Thanks so much for your response. You are exactly right about how other people respond. Close family are just as concerned. But friends and coworkers all come back with "oh it may just fix itself" or "i had a niece that has something wrong with her heart and everything is just fine". I will let you know what they say at Miami Children's Hospital. Thanks again.
iVillage Member
Registered: 03-20-2006
Thu, 03-01-2012 - 7:45am
Your post may me tear up. My son isn't the easiest one either. He has a lot of sensory issues and doesn't like procedures (just the echo causes him so much distress). I sit here and think if he had to be in a hospital how hard that would be for him and me to see him that way. According to his cardiologist that he just saw, he feels the aneurysm or dilation would be what would cause my son to need surgery and that they would just fix the valve while they were repairing the aorta. His stenosis has worsened a bit, but the biggest change was the dilation in one segment of the aorta (which I am supposing is also called an aneurysm). He said that it would be open heart surgery. I worry because my son gets upset and distressed frequently throughout the day and I don't know if this is raising his blood pressure or putting a strain on the area. I will feel better hopefully after I go for the second opinion. Do you know the size of your son's anuerysm when they operated? Thanks in advance!
iVillage Member
Registered: 04-08-2008
Fri, 03-02-2012 - 11:49am

I was told that they don't normally operate simply to repair the aneurysm because the aneurysms rarely burst in kids.