Bicuspid aortic valve (1 Viewer)

[Manster]

My 12 yo sons pediatrician heard a murmur (stethescope) on his yearly checkup…..follow up echo week later…. he has a bicuspid aortic valve which is a congenital defect….sposed to be tricuspid. So we see a peds cardiologist next week. As far as we know, there’s no/mild stenosis, or regurgitation. I have a pretty good understanding of what all this means in the big picture of his life. He will, at a minimum, have routine follow ups with a cardiologist the rest of his life. He has increased risk for multiple issues with his aorta, and heart, especially in adulthood, which could lead to surgical intervention.

This is the most common cardiac defect. Up to 2% of the population….more prevalent in males. Anyone FBG’s with BAV out there? Or have family’ members with it?

 

[Softballguy]

My 12 yo sons pediatrician heard a murmur (stethescope) on his yearly checkup…..follow up echo week later…. he has a bicuspid aortic valve which is a congenital defect….sposed to be tricuspid. So we see a peds cardiologist next week. As far as we know, there’s no/mild stenosis, or regurgitation. I have a pretty good understanding of what all this means in the big picture of his life. He will, at a minimum, have routine follow ups with a cardiologist the rest of his life. He has increased risk for multiple issues with his aorta, and heart, especially in adulthood, which could lead to surgical intervention.

This is the most common cardiac defect. Up to 2% of the population….more prevalent in males. Anyone FB’s with BAV out there? Or have family’ members with it?

My brother discovered he had a bicuspid valve a couple years ago. He went in for a sleep apnea test and found out he needed open heart surgery. The good news is that open heart surgery isn't nearly as scary as it sounds. He had a few tough weeks, but he's back to 100% now. Only real side effect is having to be on blood thinners.

I put off getting tested because I was scared what I might find out. Had an echo back in February... three great looking leaflets.

I wonder if it's a good idea for you to get checked...

 

[Manster]

My 12 yo sons pediatrician heard a murmur (stethescope) on his yearly checkup…..follow up echo week later…. he has a bicuspid aortic valve which is a congenital defect….sposed to be tricuspid. So we see a peds cardiologist next week. As far as we know, there’s no/mild stenosis, or regurgitation. I have a pretty good understanding of what all this means in the big picture of his life. He will, at a minimum, have routine follow ups with a cardiologist the rest of his life. He has increased risk for multiple issues with his aorta, and heart, especially in adulthood, which could lead to surgical intervention.

This is the most common cardiac defect. Up to 2% of the population….more prevalent in males. Anyone FB’s with BAV out there? Or have family’ members with it?

My brother discovered he had a bicuspid valve a couple years ago. He went in for a sleep apnea test and found out he needed open heart surgery. The good news is that open heart surgery isn't nearly as scary as it sounds. He had a few tough weeks, but he's back to 100% now. Only real side effect is having to be on blood thinners.

I put off getting tested because I was scared what I might find out. Had an echo back in February... three great looking leaflets.

I wonder if it's a good idea for you to get checked...

Wow,glad he got checked out! He must’ve gotten a mechanical valve if he’s on blood thinners?

Our entire family is getting echos. Apparently it is hereditary.

 

[gianmarco]

My 12 yo sons pediatrician heard a murmur (stethescope) on his yearly checkup…..follow up echo week later…. he has a bicuspid aortic valve which is a congenital defect….sposed to be tricuspid. So we see a peds cardiologist next week. As far as we know, there’s no/mild stenosis, or regurgitation. I have a pretty good understanding of what all this means in the big picture of his life. He will, at a minimum, have routine follow ups with a cardiologist the rest of his life. He has increased risk for multiple issues with his aorta, and heart, especially in adulthood, which could lead to surgical intervention.

This is the most common cardiac defect. Up to 2% of the population….more prevalent in males. Anyone FBG’s with BAV out there? Or have family’ members with it?

It sounds like you've already gotten most of the information and have an understanding.

It's very possible this has no clinical significance other than lifelong regular follow ups. Hoping that's the case.

Just see the cardiologist and ask all these questions and anything else. This is what they do.

Oh, and thank your pediatrician. It's a good pick up and just an example of why you see them for regular visits. A lot of them seem boring and pointless, but this is one of the reasons for them.

 

[Manster]

One of our concerns is my son fixating on his “defect.” It’s something we will navigate with him, obviously.

My 12 yo sons pediatrician heard a murmur (stethescope) on his yearly checkup…..follow up echo week later…. he has a bicuspid aortic valve which is a congenital defect….sposed to be tricuspid. So we see a peds cardiologist next week. As far as we know, there’s no/mild stenosis, or regurgitation. I have a pretty good understanding of what all this means in the big picture of his life. He will, at a minimum, have routine follow ups with a cardiologist the rest of his life. He has increased risk for multiple issues with his aorta, and heart, especially in adulthood, which could lead to surgical intervention.

This is the most common cardiac defect. Up to 2% of the population….more prevalent in males. Anyone FBG’s with BAV out there? Or have family’ members with it?

It sounds like you've already gotten most of the information and have an understanding.

It's very possible this has no clinical significance other than lifelong regular follow ups. Hoping that's the case.

Just see the cardiologist and ask all these questions and anything else. This is what they do.

Oh, and thank your pediatrician. It's a good pick up and just an example of why you see them for regular visits. A lot of them seem boring and pointless, but this is one of the reasons for them.

yes, we love our pediatrician!

It’s scary to hear your kid has a heart defect. At the end of the day you just want them to be healthy.

He’s an athlete too, so it will be interesting to see how this cardiologist views exercise intensity. I’ve seen various opinions on the topic. Ive found info from studies that are about as clear as mud. I’m hoping the cardiologist can help us navigate well…..I also hope they don’t scare the **** out of my son! He is already a little scared, and rightfully so. We are downplaying it…..but the reality is it’s a defect that can cause issues.

 

[Softballguy]

My 12 yo sons pediatrician heard a murmur (stethescope) on his yearly checkup…..follow up echo week later…. he has a bicuspid aortic valve which is a congenital defect….sposed to be tricuspid. So we see a peds cardiologist next week. As far as we know, there’s no/mild stenosis, or regurgitation. I have a pretty good understanding of what all this means in the big picture of his life. He will, at a minimum, have routine follow ups with a cardiologist the rest of his life. He has increased risk for multiple issues with his aorta, and heart, especially in adulthood, which could lead to surgical intervention.

This is the most common cardiac defect. Up to 2% of the population….more prevalent in males. Anyone FB’s with BAV out there? Or have family’ members with it?

My brother discovered he had a bicuspid valve a couple years ago. He went in for a sleep apnea test and found out he needed open heart surgery. The good news is that open heart surgery isn't nearly as scary as it sounds. He had a few tough weeks, but he's back to 100% now. Only real side effect is having to be on blood thinners.

I put off getting tested because I was scared what I might find out. Had an echo back in February... three great looking leaflets.

I wonder if it's a good idea for you to get checked...

Wow,glad he got checked out! He must’ve gotten a mechanical valve if he’s on blood thinners?

Our entire family is getting echos. Apparently it is hereditary.

Smart move having everyone checked.

Yeah, he got a mechanical valve. The lifespan of that versus a pig valve was greater, and given his age (42) they elected to go the mechanical route.

 

[Pip's Invitation]

I'm a medical journalist who has covered cardiology for 12 years. Everything said so far in this thread is spot on but I'll add a few things.

You may want at some point to have his lipoprotein(a) level checked. This is not something that is part of a routine blood test and has to be ordered separately. Most people only need their level checked once because it doesn't vary much over your lifetime. There is a strong correlation between having high Lp(a) and eventually having aortic stenosis. Since he is already at elevated risk for aortic stenosis due to having a bicuspid aortic valve, if he also has high Lp(a), that is information that doctors will need to know for his long-term care. There are currently no dedicated treatments for high Lp(a), but there are five in development and some of them should hit the market in the next 2-3 years. Some existing heart drugs can modestly lower Lp(a) but that is not their main use.

We are starting to get better at detecting heart valve problems early. Eventually we will learn enough to enable prevention strategies tailored for valvular stenosis, regurgitation, etc. Your son is of an age where he should be able to take advantage of this.

 

[Terminalxylem]

Agree with what’s been said. The cardiologist will be able to determine the significance of the finding and long term follow up.

I’ve a friend, himself a pediatric cardiologist, who just had his aortic valve replaced, in his early 50s. He delayed surgery as long as possible, as there continue to be breakthroughs in structural heart disease, with less invasive procedures and blood-thinning requirements. One would only expect that trend to continue.

As your son gets older, I’d suggest he keep a close eye on his blood pressure - maybe get a home cuff. High blood pressure is common, and he doesn’t need anything else to overwork his heart. I’d also consider investing in a smart watch/wearable heart rate monitor, as arrhythmias are more common with nearly every valvular abnormality, including bicuspid AV. By no means are these suggestions standard of care, but there’s probably no harm in being proactive.

 

[InDitkaWeTrust]

My 12 yo sons pediatrician heard a murmur (stethescope) on his yearly checkup…..follow up echo week later…. he has a bicuspid aortic valve which is a congenital defect….sposed to be tricuspid. So we see a peds cardiologist next week. As far as we know, there’s no/mild stenosis, or regurgitation. I have a pretty good understanding of what all this means in the big picture of his life. He will, at a minimum, have routine follow ups with a cardiologist the rest of his life. He has increased risk for multiple issues with his aorta, and heart, especially in adulthood, which could lead to surgical intervention.

This is the most common cardiac defect. Up to 2% of the population….more prevalent in males. Anyone FBG’s with BAV out there? Or have family’ members with it?

I've had BAV going on 53 years. Back in the day they just chalked it up to having a mild heart murmur. It never stopped me from competing in sports and I'm still an active runner. The last decade or two, the doctor has wanted me to get an echo every 3 years or so. As @Terminalxylem mentioned, my doc keeps a very strict eye on my BP as well as a wearable smartwatch (I have a Garmin for tracking run metrics anyway). The doc has already mentioned that I may need valve replacement in the future, but we shall see.

 

[Manster]

Agree with what’s been said. The cardiologist will be able to determine the significance of the finding and long term follow up.

I’ve a friend, himself a pediatric cardiologist, who just had his aortic valve replaced, in his early 50s. He delayed surgery as long as possible, as there continue to be breakthroughs in structural heart disease, with less invasive procedures and blood-thinning requirements. One would only expect that trend to continue.

As your son gets older, I’d suggest he keep a close eye on his blood pressure - maybe get a home cuff. High blood pressure is common, and he doesn’t need anything else to overwork his heart. I’d also consider investing in a smart watch/wearable heart rate monitor, as arrhythmias are more common with nearly every valvular abnormality, including bicuspid AV. By no means are these suggestions standard of care, but there’s probably no harm in being proactive.

My mom has hypertension, and so do I. High dosage of lisinopril. I could see both my kids dealing with BP issues as adults. Although my wife has great BP….so who knows.

Thanks for the response!

 

[Manster]

My 12 yo sons pediatrician heard a murmur (stethescope) on his yearly checkup…..follow up echo week later…. he has a bicuspid aortic valve which is a congenital defect….sposed to be tricuspid. So we see a peds cardiologist next week. As far as we know, there’s no/mild stenosis, or regurgitation. I have a pretty good understanding of what all this means in the big picture of his life. He will, at a minimum, have routine follow ups with a cardiologist the rest of his life. He has increased risk for multiple issues with his aorta, and heart, especially in adulthood, which could lead to surgical intervention.

This is the most common cardiac defect. Up to 2% of the population….more prevalent in males. Anyone FBG’s with BAV out there? Or have family’ members with it?

I've had BAV going on 53 years. Back in the day they just chalked it up to having a mild heart murmur. It never stopped me from competing in sports and I'm still an active runner. The last decade or two, the doctor has wanted me to get an echo every 3 years or so. As @Terminalxylem mentioned, my doc keeps a very strict eye on my BP as well as a wearable smartwatch (I have a Garmin for tracking run metrics anyway). The doc has already mentioned that I may need valve replacement in the future, but we shall see.

It really comes down to each individual. How it progresses, or doesn’t. Watching for stenosis, regurg, and aortic dilation. Lifestyle and genetics play a major role obviously.

 

[Manster]

I'm a medical journalist who has covered cardiology for 12 years. Everything said so far in this thread is spot on but I'll add a few things.

You may want at some point to have his lipoprotein(a) level checked. This is not something that is part of a routine blood test and has to be ordered separately. Most people only need their level checked once because it doesn't vary much over your lifetime. There is a strong correlation between having high Lp(a) and eventually having aortic stenosis. Since he is already at elevated risk for aortic stenosis due to having a bicuspid aortic valve, if he also has high Lp(a), that is information that doctors will need to know for his long-term care. There are currently no dedicated treatments for high Lp(a), but there are five in development and some of them should hit the market in the next 2-3 years. Some existing heart drugs can modestly lower Lp(a) but that is not their main use.

We are starting to get better at detecting heart valve problems early. Eventually we will learn enough to enable prevention strategies tailored for valvular stenosis, regurgitation, etc. Your son is of an age where he should be able to take advantage of this.

Thank you for the info! I’m compiling questions for the cardiologist, and will definitely ask about lipoprotein.

 

[SWC]

i wish you and your son all the best manster seems like he has a caring and good dad and im sure youll keep him on the positive side of things no matter what comes of this take care brohan and take that to the bank

 

[Manster]

i wish you and your son all the best manster seems like he has a caring and good dad and im sure youll keep him on the positive side of things no matter what comes of this take care brohan and take that to the bank

Thanks brochacho!

He’s a good kid. Sweet as pie. I’d do anything for him.