so i just found out yesterday that my 2 yr old son has bicuspid aortic valve stenosis
he's got no symptoms other then a murmur as of right now and acts like a normal 2 to 3 yr old
he's got a 40 out of 100 for the radiant of i'm guessing constriction
he needs to go back and see the cardiologist every 6 months now to be revaluated
the doctors told us that in almost all cases it get worse
we were kind of hoping it would stay the same and no medical intervention would have to be done but that seems to be impossible for what we have been told
also we were told that he will have to limit his activity to almost nothing in the years to come because his heart will not be able to take it
is that true ??
is there a high mortality rate for BAVS is what i have stared calling it
they started telling us about the cauterization procedure but when will they know if its need ?? or is it better to get it done now so there wont be any permanent heart damage done by the heart over working it self to compensate ??
one thing i don't not understand is they have a ton of things to do for this type of thing why cant they separate the valves that are fused together ??? would that not be the best treatment instead of replacing the whole valve ?
and by what age is it that most children have problems with it is there anything i can watch for ??
as you can tell i have many things that were not answered by the doctor and am kind of still in disbelief
can anyone help me fill the void of the the unknown ?
and tell me what's going to or could happen in the years to come
Bicuspid aortic valve is a very common congenital cardiac defect in which two of the three aortic valve leaflets are fused, or only two leaflets out of three formed. It can be associated with aortic valve stenosis (obstruction), which is appears that your son has, aortic valve insufficiency (leakage), and aortic root dilation. These can also develop over time, even if there is no sign of these findings initially, so these children do require lifelong follow-up. Unfortunately, these valves have something wrong with them in one way, shape, or form throughout life, but it does not mean that it should be acutely life-threatening. With appropriate follow-up and care, there is not a high mortality rate. From an activity standpoint, he will likely not be allowed to participate in activities with a high isometric exercise component, such as football, weightlifting, or wrestling, but should be able to participate in many other kinds of athletic activities recreationally and, potentially, even competitively.
The amount of obstruction across your son’s valve, also known as the gradient, is 40 mmHg. It is unclear whether this is the peak or the mean gradient; if it is the peak, the amount of actual obstruction is likely less. If it is the mean, this correlates more closely to the actual amount of obstruction. It can progress over time, but can also be relieved with cardiac catheterization with balloon valvuloplasty. The heart can tolerate a fair amount of obstruction, so it is better to delay intervention until it is needed. No intervention is without risks, and the risks associated with balloon valvuloplasty include inability to relieve the stenosis as well as creation of aortic insufficiency. It also may be that valve replacement is necessary in the future. However, delaying this until absolutely necessary will be important, as well.
Overall, if you are not getting the answers and information that you would like from your cardiologist, it would be important for both you and your son to seek a second opinion.
I am so sorry that you and your precious son are going through this. Please do not think I am an idiot for asking, but have you thought about getting a second opinion, and have you thought about taking your son someplace like Stanford? It might be a good idea to take him someplace like that, where you will receive medical advice from doctors who are at the absolute top. I do not know where you live, but Stanford comes to mind because they saved the life of my co-worker's baby, who was born with a serious heart problem. Good luck and God bless.
I am so sorry to hear about your son.My son who will be 3 at the end of June was diagnosed with this and a few other heart problems at 8 weeks old.The drs never heard his heat murmur until then and then we were immediately referred to a ped cardiologist.That was on a Tuesday.That night the ped and cardiologist called to say that he was booked for the cath procedure at Riley childrens Hospital on the Thursday.Needless to say our lives were turned upside down in a couple of days.They said that if he never had the surgery he would have died in a week and it would have been ruled as sids until the autopsy and then they would have discovered his heart issues.anyway he had the surgery and at the time his mean gradient was 76.All was well for 2 weeks and then we went to the ped cardiologist for a check-up and he could not feel any pulses from his waist downwards.That was also a Tuesday funny enough.I got a call from Riley again to say that he was to have major heart surgery the following week.They discovered that the arch in his aortic valve had become severely narrowed.They said that it could happen after they do the cath surgery that he had.This next surgery was a big one.His surgery was 4/5 hours long and he was in ICU for 5 days and then in a reg. room for another 4.It was a long scary road as they almost lost him twice in the OR.It all worked out and he is doing well.He also sees the ped. cardiologist every 6 months and he is monitored closely.His pressures at the moment are at 37.He does also have an abnormal mitral valve as well as some leakage from his aortic valve.He will eventually have to have his aortic valve replaced but they are hoping to wait until he is at least a teenager. We has been told to limit his activity when he gets older , no rough sports in school no track,no football,things like that.
You would never say that there is anything wrong with him on the outside.He has had very severe fever episodes for a year and counting which they have never found a cause for.I think you need to find a ped. cardiologist that will help you understand more fully what your son is going through.Please e-mail if you have any questions.
Sorry to hear about your son I know how hard this must be for you.I am also a mother of a child with aortic regurgitation and stenosis and bicuspid aortic valve. My son is now 9 years old and is doing good. He was diagnosed with all of this when he was 8 months old. We have been going back to the cardiologist every year and in the last 2 years every 6 months. He has progression of his regurgitation which is now moderate and mild stenosis. He has had the restrictions placed on him for awhile for no isometric exercises and no contact sports. My son does play hockey and all kinds of sports but he has learned when to slow down and take it easy This will be his last year of playing hockey.. There are different progressions of this condition and I think 3 of us parents have shown that through our children. You have great questions and i think you should print all these questions and call the cardiologist and make another appointment to answer your questions or at least speak with the cardiologists nurse. I have learned that if I don't remember the question while I am at the doctors visit that i write them down and i bring them with me. I have called back to our cardiologist the next day with a ton of questions. There are great parents on here to talk to and you will find this place very helpful. Hope this was helpful and I would be happy to chat with you any time.
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