Nutrition Health Chat Live NOW! Learn how vitamins, minerals, and phytonutrients affect your health. Free live Q&A with Amy Hendel now. Join us!
Member Comments are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum. ALWAYS check with your personal physician before taking any action regarding your health! MedHelp International and our partners, sponsors and affiliates have no obligation to monitor any comments posted on this site, or the content and/or accuracy of such exchanges. MedHelp International does not endorse the views of any user.
Heart Disease (Expert Forum)
15-month-old son with bicuspid aortic valve and mild stenosis
Answered by
Cleveland - OH
This forum is for questions and support regarding heart issues such as: Angina, Angioplasty, Arrhythmia, Bypass Surgery, Cardiomyopathy, Coronary Artery Disease, Defibrillator, Heart Attack, Heart Disease, High Blood Pressure, Mitral Valve Prolapse, Pacemaker, PAD, Stenosis, Stress Tests.
15-month-old son with bicuspid aortic valve and mild stenosis
by Butser, Sep 05, 2006 12:00AM
Thank you for taking my question.
Background: My 15-month-old son was diagnosed with a bicuspid aortic valve when he was 4 months old. At that time there was no stenosis. The cardiologist said the valve was performing just as it should be and there were no concerns. A month ago my son had his annual checkup. During the echo the cardiologist said there was “mild” stenosis but that everything looked fine. I asked him if the presence of stenosis was a bad sign, and he said “No. It’s not uncommon and over time the valve may even leak a little, too. But you don’t have anything to worry about.” He also said, “Sometimes a valve is big and ugly and you can just tell it’s going to have problems down the road, but his doesn’t look like that. It looks good and I don’t forsee any problems. We’ll just keep an eye on it every year and make sure he takes antibiotics before dental work or any type of surgery like we talked about last year.” I asked the cardiologist about the chances of my son needing an aortic valve replacement at some point in his life. He said he may never need one and the chances of him needing one before he turns 30 is about 5 percent.
Here are my questions:
1) What percentage of BAV patients develop mild stenosis at such a young age? I’ve read that 2/3 of people with BAV never have any stenosis, which makes me question the doc when he said the presence of stenosis wasn’t a bad sign.
2) Is it a given that the degree of the stenosis will progress over time, or is it possible for the narrowing to always remain mild or (wishful thinking?) even improve as my son’s body and heart grows?
3) Can you provide a statistic that will tell me the chances of a BAV patient with mild stenosis as an infant/toddler needing a replacement at some point during their lifetime? Does the “5 percent before 30” seem right to you even though there already is mild stenosis?
4) Generally speaking, what are the chances a valvoplasty will be needed?
5) Should I get a second opinion, or do you agree that there is no cause for concern and that my son should lead an active, normal life and remain relatively unaffected by the mild stenosis.
This is all very scary to us and I need to be as informed as possible. Thanks in advance for your expertise and aid.
Background: My 15-month-old son was diagnosed with a bicuspid aortic valve when he was 4 months old. At that time there was no stenosis. The cardiologist said the valve was performing just as it should be and there were no concerns. A month ago my son had his annual checkup. During the echo the cardiologist said there was “mild” stenosis but that everything looked fine. I asked him if the presence of stenosis was a bad sign, and he said “No. It’s not uncommon and over time the valve may even leak a little, too. But you don’t have anything to worry about.” He also said, “Sometimes a valve is big and ugly and you can just tell it’s going to have problems down the road, but his doesn’t look like that. It looks good and I don’t forsee any problems. We’ll just keep an eye on it every year and make sure he takes antibiotics before dental work or any type of surgery like we talked about last year.” I asked the cardiologist about the chances of my son needing an aortic valve replacement at some point in his life. He said he may never need one and the chances of him needing one before he turns 30 is about 5 percent.
Here are my questions:
1) What percentage of BAV patients develop mild stenosis at such a young age? I’ve read that 2/3 of people with BAV never have any stenosis, which makes me question the doc when he said the presence of stenosis wasn’t a bad sign.
2) Is it a given that the degree of the stenosis will progress over time, or is it possible for the narrowing to always remain mild or (wishful thinking?) even improve as my son’s body and heart grows?
3) Can you provide a statistic that will tell me the chances of a BAV patient with mild stenosis as an infant/toddler needing a replacement at some point during their lifetime? Does the “5 percent before 30” seem right to you even though there already is mild stenosis?
4) Generally speaking, what are the chances a valvoplasty will be needed?
5) Should I get a second opinion, or do you agree that there is no cause for concern and that my son should lead an active, normal life and remain relatively unaffected by the mild stenosis.
This is all very scary to us and I need to be as informed as possible. Thanks in advance for your expertise and aid.
Doctor's Answer
by Cleveland Clinic, Sep 05, 2006 12:00AM
, Sep 05, 2006 12:00AM
Buster,
Congrats on having a new child. Parenthood is stressful enough without having to worry about these things.
Im not a pediatric cardiologist and there are alot of variables involved. A large number of patients with biscupid aortic valve eventually need surgical repair. However, most need them later (after age 30). The good news is generally, they are able to lead normal lives without any significant inconvienences other than occasional noninvasive testing(echo) to follow the valve. Some patients also have aortic abnormalities and these need to be followed over time. Unless there is significant stenosis, there would be no need for valvuloplasty. A second opinion is not unreasonable, especially if it can help you relax more!
good luck
Congrats on having a new child. Parenthood is stressful enough without having to worry about these things.
Im not a pediatric cardiologist and there are alot of variables involved. A large number of patients with biscupid aortic valve eventually need surgical repair. However, most need them later (after age 30). The good news is generally, they are able to lead normal lives without any significant inconvienences other than occasional noninvasive testing(echo) to follow the valve. Some patients also have aortic abnormalities and these need to be followed over time. Unless there is significant stenosis, there would be no need for valvuloplasty. A second opinion is not unreasonable, especially if it can help you relax more!
good luck
Related discussions
-
3 year old son Pulmunary Valve Stenosis (3 replies):My son was diagnosed with Pulmonary Valve Stenosis at 2 ...[more]
-
Severe Aortic Stenosis and Rapid Heart Beat (2 replies):Dear Doctor, I am a 45 year old female who has been m...[more]
-
Aortic stenosis (1 replies):I am 61 and have mild aortic stenosis. Is it possible t...[more]
-
Husband's Aortic valve stenosis is getting worse, should...Subject: Husband's Aortic valve stenosis is getting w...[more]
-
Aortic Stenosis (1 replies):I am 19 years old and have always wanted to be a firefig...[more]
-
Re: Husband's Aortic valve stenosis is getting worse, sh...Posted By CCF CARDIO MD - CRC on April 14, 1999 at 11:53...[more]
-
aortic stenosis (2 replies):Hi- I have recently diagnosed with mild arrtic stenosis ...[more]
bicuspidfoundation.com
valvereplacement.com
He was diagnosed at 6 weeks and we were told the same thing. This is a very common defect that a lot of people live with having no complications. Let your son be as active as he wants to be and follow your cardiologists advice. Mild stenosis and leaking are normal for this problem. My son who is 12 in a week has severe regurgitation but it's been very gradual to get there. Do your research and educate yourself on the defect, there is an abundance of information on it. My son may be looking at surgery soon but everyone is different so don't let the horror stories get to you. Continue to get his Echo's done so that can follow him as he grows. I started a log with his measurements so I can see for myself the progression. With the stenosis the gradient becomes your key number, my sons is still at 47 and is still considered moderate. Stay informed but don't let it run your life.
Take care!