Family planning

[Astro]

Thanks for your all your thoughts. It has helped me to decide to organise scans for the kids. It is the safest way.

 

[Protimenow]

Astro:

What would you DO with those scans? In most cases, bicuspid valves don't become a problem until adulthood (although we've had exceptions at this site). Would you pick the kids who have BAV and warn them that at some time they may need a new, intranasal valve repair that won't be available for decades? Would you give them a reason to curtail their daily activities because they 'have a bad heart valve'? Aside from seing that there may possibly be an issue, are you doing them that great a favor?

Would you just keep it in the back of your mind, for a day that may never come, and your kid may be exhibiting what could be symptoms of a bad valve? Or would you subject them to echos every five years or so?

I'm not quite clear about how this is the 'safest way.'

Enlighten me.

(I have a friend whose daughter died suddenly from a brain aneurism. He had one, and it enlarged, and, fortunately had a great doctor and exceptionally good medical and rehab team. It took a while but he's doing fine.
They tested his remaining son, and I think may have tested his grandchildren, but the question is: what do you do with this information if son or grandkids have a small aneurism? You certainly don't want to do brain surgery to fix the aneurism. You can watch it. You can, perhaps, help to keep them low stress (and, thus, change their lives). You can, maybe, get a grain scan or other diagnostic test every few years - but what if the aneurism worsens between tests? There are some things that, even if you know it exists, there's not a lot you can do about it.

Is a double mastectomy, hysterectomy and oopherectomy the right way to avoid breast cancer if your mother had it and you both share a genetic marker? )

Again, I'm not sure how knowing that one of your kids has BAV will be of much more value than not knowing.

 

[Duffey]

@Protimenow , it’s ok if you don’t understand the value in knowing if Astro's children might have a BAV. They’ve His children. He doesn’t need to “enlighten “ you. Good grief.

 

[Astro]

Astro:

What would you DO with those scans? In most cases, bicuspid valves don't become a problem until adulthood (although we've had exceptions at this site). Would you pick the kids who have BAV and warn them that at some time they may need a new, intranasal valve repair that won't be available for decades? Would you give them a reason to curtail their daily activities because they 'have a bad heart valve'? Aside from seing that there may possibly be an issue, are you doing them that great a favor?

Would you just keep it in the back of your mind, for a day that may never come, and your kid may be exhibiting what could be symptoms of a bad valve? Or would you subject them to echos every five years or so?

I'm not quite clear about how this is the 'safest way.'

Enlighten me.

(I have a friend whose daughter died suddenly from a brain aneurism. He had one, and it enlarged, and, fortunately had a great doctor and exceptionally good medical and rehab team. It took a while but he's doing fine.
They tested his remaining son, and I think may have tested his grandchildren, but the question is: what do you do with this information if son or grandkids have a small aneurism? You certainly don't want to do brain surgery to fix the aneurism. You can watch it. You can, perhaps, help to keep them low stress (and, thus, change their lives). You can, maybe, get a grain scan or other diagnostic test every few years - but what if the aneurism worsens between tests? There are some things that, even if you know it exists, there's not a lot you can do about it.

Is a double mastectomy, hysterectomy and oopherectomy the right way to avoid breast cancer if your mother had it and you both share a genetic marker? )

Again, I'm not sure how knowing that one of your kids has BAV will be of much more value than not knowing.

I am not saying that if they have a BAV, they should have it prophylactically replaced (which your mastectomy, hysterectomy example implies).
The value would be in avoiding a valve issue presenting in an uncontrolled manner. Many people's first knowledge of a valve issue is presenting with heart failure. If a valve is allowed to get to this point, permanent heart damage has occurred which won't be fixed by replacing the valve.
There are many elite athletes who have a BAV. I would remind the child of this fact. There is no evidence that elite athletes cause their valve to deteriorate more rapidly than non athletes. Therefore they should live life to the fullest. There are no limitations with a well functioning BAV.
Whether I scan them now or let them make their own decision as a young adult, the trade off is the small chance of a child developing problems before adulthood. Provided that the children are running around normally and have no murmur, is it reasonable to leave it until they are young adults? That was really at the heart (pun intended) of my question. If the scans are clear then years of potential worry can be stopped.
I view this as a difficult topic where people have differing opinions. Thank you for your contribution, it is good to hear some anti scan arguments.

 

[Superman]

Astro:

What would you DO with those scans?....snip

Is a double mastectomy, hysterectomy and oopherectomy the right way to avoid breast cancer if your mother had it and you both share a genetic marker? )

Again, I'm not sure how knowing that one of your kids has BAV will be of much more value than not knowing.

We don’t send our kids in for valve replacements because they might go bad. What we do is have the kids monitored by a pediatric cardiologist. The get echos updated yearly or every two years as recommended by their doctor. We can monitor if no regurgitation becomes trace, mild, moderate, or severe. We know to at least be mindful of isometric exercise.

Kids die at sports practices due to unknown heart issues. Knowing and adjusting activities and monitoring for changes can be very important. It’s not always going to be as obvious as a pronounced murmur or clearly short of breath relative to peer group.

Ignorance may be bliss when nothing goes wrong, but it’s awful painful if just a little knowledge could have avoided tragedy.

In your breast cancer example, what you do is be more mindful of getting mammograms maybe with greater frequency than the general population. You know if something doesn’t feel right, what direction to look.

 

[pellicle]

I view this as a difficult topic where people have differing opinions.

I believe it is a vexing issue. My view that it may be passed to any children I may have bothered me in my 20's (having lived through difficult times in my early teen years because of it.

 

[pellicle]

Ignorance may be bliss when nothing goes wrong, but it’s awful painful if just a little knowledge could have avoided tragedy.

seconded

 

[Astro]

They are compelling arguments, thanks Superman and pellicle

 

[pellicle]

They are compelling arguments

I'm not sure if you saw my reply on another thread
https://www.valvereplacement.org/threads/hereditary-bav.42328/post-773261
and similarly
https://www.valvereplacement.org/threads/2nd-avr.887219/post-890867

 

[Protimenow]

No, ignorance is not bliss. And the idea to monitor for changes every few years is probably prudent - especially if a bav has been diagnosed.

Before your child is involved in physical education, or an activity that could put stress on the heart, it's not a bad idea to do a cardiac workup (because of your history). (I wish that, when I first started physical education classes when I was 11 or so, they would have been able to do more than listen to my heart. I fainted on the first day - for less than a second, falling into the kid in front of me. If I had known of a problem, I may have at least known WHY I was less able to keep up with the others, and my teachers wouldn't have just considered me lazy. At the time, little could have been done, but at least my activities - and expectations - could have been kept more in line with my capabilities).

And, yes, this can be a difficult topic. You want to know what's going on, and to protect, your children - but at what point would the testing become excessive and, perhaps, make a normal kid feel damaged, even if this isn't true?

 

[Astro]

A BAV with normal function should only require infrequent followups and the paediatric cardiologist would hopefully instil confidence that there are no limitations to physical activity. If a BAV is discovered with a significant functional problem, it can be managed appropriately.

 

[Keithl]

How many times have we seen on the news some young kid died unexpectedly such as when playing football only later to hear they had an undiagnosed heart issue. Not saying it is alway or was BAV, but scanning early and then knowing one way or the other to have it watched does not hurt anyone. This is a different scenario that sa6 scanning for the great cancer gene as that double mastectomy is do to prevent an issue, having BAV would just mean watch it. Honestly if mine were not caught 12 years ago I still would not know I had it as I had no symtopms of it or the aneurysm even when they went in 4 months ago at 5.1cm. I could have gone on until it killed me or until they caught it when it would have been far more complex surgery and risk.

 

[Protimenow]

I rarely see reports like this. Occasionally, some teen athlete's death may make the news.
More frequently, college or Professional athletes (it seems that it's most often American Football players) might drop dead, and a heart problem is determined to be the cause -- why don't the schools or professional teams screening these elite athletes also do cardiac workups? It's protecting their investments). Often, most recently, it's drugs that seem to be killing athletes.

And, FWIW, although I haven't researched this, I think that most of the athlete deaths from cardiac-related issues are related, not specifically to BAV, but to aortic dissection and other 'tears' in the structures moving blood to the heart. (This is not to say that if a BAV is discovered BEFORE the death, this may be suggestive of weakened aortic tissue, and possible aneurisms that, if discovered and diagnosed earlier may have kept the athlete from competing - but allowed them to live a long, mostly normal life).

 

[Protimenow]

There is one absolute truth:

The ability to have kids is hereditary.
If your parents didn't have any, neither will you.