Screening Children for BAV?

[MikeHeim]

I have a question that has been bothering me for some time, and probably will get me blasted by many others in the group (again ).

Why do some parents with BAV feel the need to immediately screen all of their children for the same condition? I can immediately think of several examples on this list, but I certainly don't want to single anyone out. From my experience on this list alone, it appears that many people don't discover that they have BAV until in their 40's, 50's, or even later. From information I have found on other websites, it sounds like a certain percentage of the population has BAV, it never causes a problem, and the person lives a full and "normal" life without ever knowing they have a heart condition.

Is it really fair to a child to be diagnosed with a heart issue when they are early in life, and then have to live with that burden (even though it is not causing any problems and may, in fact, never cause any problems)?

Personally, I never knew I had any valve problem until I was almost 29 and began to have symptoms. I thank God for the 28 years that I ran around blissfully unaware and lifted weights, ran marathons, and pushed myself and my body as I pleased. Of course, it is very possible that if I had found out about the heart issues earlier, I may have been able to make some lifestyle changes and pushed off surgery by 10-20 years, or even longer. Regardless, I wouldn't trade the recklessness in my 20's for anything. If that meant that I needed heart surgery at 28 instead of 48, so be it.

This post is meant to be a philosophical argument, and I sure many will disagree with me. However, a little debate never hurt anyone, did it?

 

[mntbiker]

Mike,
Even though I don't like you and have considered adding you to my ignore list that is a decent question.

I would be inclined to agree that there are many people that seem to go too far with screeening the kids, but here are the reasons that had been given to me by my cardioligist.

I found out when I was 23 about my BAV, didn't have any problems for about 15 years. When my wife got pregnant the cardioligist told me we had to tell the obgyn that I had this problem. The obgyn had us do a fetal echo to scan for heart defects. This did not rule out BAV but did eliminate other possible defects. I asked why they felt this was necessary and they both told me that since I had a genetic heart defect my children had a higher chance of getting a more serious heart defect.

So the big question at this point becomes if your children do have a higher chance of having a more serious heart defect isn't it the responsibility of the parent to do all they can to insure the problem is recognized and addressed as early as possible? Are you willing to risk the early death of your child to give them a few more years without knowledge of a problem?

 

[Natanni]

Wow!

We screened our daughter at the recommendation of the cardiomyopathy team Nathan sees at the Mayo. WHY? Nathan's Dad had a heart transplant when he was in his mid-forties. He was adopted, so no heart history is known. We don't know WHY he had cardiomyopathy. Next up to bat was Nathan, my husband. Flip/flopped over the years as bicuspid/tricuspid aortic valve, then hypertrophic cardiomyopathy. There are things that Nathan could have done perhaps, to prolong the life of his natural valve and this can be a very key issue. There are also other irregularites that can go along with BAV that can be LIFE THREATENING, like aneurysms. For a child playing hockey, and getting checked into the boards -this could be deadly. Bottom line is, in the event that my daughter was bicuspid, Nathan's doc was going to restrict some of her more dangerous skating activities. With a FAMILY HEART HISTORY as strong as my husbands, you may feel differently. Maybe not. I am really not sure what you are trying to get at MikeH. I can tell you that my husbands, his Dad, myself and my daughter all have a peace of mind now that we didn't before. Even though my son had no murmur, I wish I would have been able to have him screened as well. Thanks so much from not singling me out, but I will freely admit to being one of those parents.

Ann

 

[francie12]

Hi,
I am also one of those parents. I like debate too, and will try to explain our point of view. For us, it adds up to simple steps of logic... BAV's often run in families. A significant number come along with dilated aortas. They also can result in enlarged hearts. Either of these conditions can advance to a critcal point without a murmer...they go undetected until the situation has become hard to deal with. When my son's murmer was heard his LV was already sigificantly enlarged, along with an aorta that needs to be carefully observed through his adolescence. And...would you have had two teeth pulled and urinary surgery without premedication? He would have had we not known about the BAV.

I really appreciate your point of view about about a carefree childhood without the worry of heart problems. I've spent alot of time thinking about it. Matt knows the mechanics of his condition, enjoys a little extra attention, and that's it. He's not worried and never has any desire to go to vr.com! I'm the one that's here alot, boning up on everything so that I'll be informed when the time comes. When I sign my posts, I often include his name simply because I'm not the patient, but he never reads the posts. In a nutshell, he's relatively unaffected by the whole thing, and I want to keep it that way.

Thanks for everyone's opinions. These issues are very close to my heart.

Jane

 

[MikeHeim]

I sincerely appreciate that nobody has taken offense to my original post. I would NEVER want to come off as if I feel like I have the right to tell anyone else how to parent. I just felt like it is a fair question to ask and might spark an interesting debate...

 

[inlaguna]

I was diagnosed at 18 months of age and had my surgery at 43 so I did live it my entire life. Actually, my parents knew , but I was not actually told until I was seven/eight. I thought every kid got MRI's and echos etc..... I had no clue.

Quite frankly, I got used to the fact that I would eventually have to deal with surgery and it made me a lot more heart wise throughout my teens and twenties. It in no way affected my childhood and I was as care free as the next kid.

I probably ate a little better than I would have, I pre-medicated before having dental procedures as BAV patients have a higher rate of endocarditis, and I generally paid greater attention to my body.

Incidently, I was also diagnosed with a coarctation of the aorta and the reason my parents told me about the BAV then ( at age 8) was I was going in to Childrens Hospital of Philadelphia the very next day to have my coarc repaired......talk about shocking.

So, having your kid tested and deciding when it is right to let them know can be two different things as well.

 

[Kate]

I agree - I knew about my heart problem from early childhood, did not find the knowledge particularly stressful and, because of it, was able to avoid some potentially dangerous situations. For example, although a fairly wild teen, I never did cocaine because I'd been warned of its potentially fatal effect on someone with my condition. Serious weight lifting is another potentially lethal activity that a young adult with BAV would be wise to avoid. Also, early awareness can help to prevent bacterial endocarditis by instilling good dental habits and other preventative measures.

So, in a nutshell, ignorance may be bliss, but it can have some pretty serious ramifications for someone with BAV. Kate

 

[aussigal]

I'm also a parent who had an uncontrollable urge to discover if her kids had BAV...I did it mainly from a preventative point of view...

I had read how very inheritable it was and figured it was the sensible thing to do... My own father died suddenly at 38 of heart-stuff and he was under the care of a Cardio at the time,. his parents also quite early (50-60) of heart-stuff so this also played on my mind

As it turns out 2 out of our 3 sons have a BAV so they will get the benefit of protective antibiotics and we get peace of mind from yearly echoes on their valves and expanding aortas etc...

None of the boys are on any restrictions of any kind ( I do try to get them to eat healthier). I have drilled into them that its OK to rest if they find themselves out of breath and IF they have any weird pains to tell us...

They are not continually worried about their hearts...in-fact they think "it" (OHS or AVR) will never happen to them even though they recently saw me go thru a complicated AVR & OHS.

This really has not changed their lives one little bit, and they dont seek out info on BAV or OHS . They very very occaisionally bring it up if they want to get out of something but this trick rarely works.

very interesting topic Mike...and I'm not offended at all...and quite thrilled to read from Kate and others who are now adults and had this knowledge all along.

I am very pleased to report that our boys are totally well-adjusted and unaffected by their BAV's...I am also hoping that it will become a habit for them to remember they have a BAV as one day it will be their responsibility.

 

[Mary]

Mike,
Do you have children yet?

In my situation, our son was preparing to enter the military and we needed to know if it was going to be an option. He had a murmur early in life that disappeared with age so we had reason to suspect that he might have a BAV
(and yes, he has a bicuspid).

My dad died when he was 54 years, 11 months, 21 days old from his biscuspid aortic valve. I know exactly how old he was, because I am continually aware that I have yet to outlive his age. When you have an inheritable condition that you know can end your life prematurely, I think you have more anxiety concerning what you have passed on to your children.

You have asked a theoretical question, but it's more than an abstract, intellectual exercise to me.
If you had a BAV, and if you lost an immediate member of your family to it, and if you had children to pass the condition on to, you would probably intuitively understand why some have felt it's better to be safe than sorry.

 

[ClickTicker]

I grew up knowing about the defect, but that was due to a severe murmur early on. Had my valve replaced at 18. Quite different than most it would seem, as I had absolutely no family history. Grandparents lived into their 80's. My parents have had extensive heart tests and came back normal. I was always under the impression that it was just a random defect. I'm guilty for not looking into it further and have since found out that I passed it on to at least one of my children.

I agree that it is so much better to know. Although many children like yourself were able to do all the physically active things that they wanted to do in blissful ignorance, there are other cases that you read in the paper about the prep athlete who dropped dead in practice because they didn't know. Not sure if you'd recall the Hank Gathers story, but he was a college basketball star that died on the court due to cardiomyophathy reveiled in an autopsy. That's not how I would want to find out.

 

[Lynlw]

I grew up knowing about the defect, but that was due to a severe murmur early on. Had my valve replaced at 18. Quite different than most it would seem, as I had absolutely no family history. Grandparents lived into their 80's. My parents have had extensive heart tests and came back normal. I was always under the impression that it was just a random defect. I'm guilty for not looking into it further and have since found out that I passed it on to at least one of my children.

I agree that it is so much better to know. Although many children like yourself were able to do all the physically active things that they wanted to do in blissful ignorance, there are other cases that you read in the paper about the prep athlete who dropped dead in practice because they didn't know. Not sure if you'd recall the Hank Gathers story, but he was a college basketball star that died on the court due to cardiomyophathy reveiled in an autopsy. That's not how I would want to find out.

I know in the big picture ie life and death it isn't that signifigant, but I was wonderring if anyone worried about insurance issues before they had their kids tested? i only ask because we have never been able to get Justin life insurance, so I think if people get their kids w/out symptons screened, i would try to purchase life insurance before incase it turns out there is a "heart condition' so you /they don't run into problems w/ the preexisting clause
I am in no way saying people shouldn't get their kids screened, i've bee working for years to try to get every newborn screened for CHD because of the stories like hank gathers and the deaths from sports and disney because of undetected chds. I just would play it safe and get insurance first Lyn

 

[Marguerite53]

To answer Mike.....Endocarditis. Sudden death. Enough said.

To answer Lynlw. My kids are 23, 21 and 18. Doctor's would not check them because there are no detectible murmurs. (ie. I would not be able to get our medical insurance to cover an echo for any of them). I paid cash (mucho $$) for my daughter's echo since she was going off to play college sports. I found a university study (with the help of someone here on vr.com who doesn't post much) and just recently had my boys tested. Those were free. The reports are 2 sentences long (not detailed) but the pictures were clear enough to determine the construction of their hearts. I may get copies of the tapes and a fuller report, but I can tell I'll have to bug the research cardiologist to get them and may not bother. All 3 kids have different "problems" with their hearts. None have my BAV. One certainly needs antibiotics now (MVP) and another has very mild AI and it has been suggested she needs antibiotics from a cardio, but doesn't need them says her PCP. The third, with an enlarged heart, has me completely baffled so I just told him to stop lifting weights until I can figure it out.

Herein lies the dilemma. When they go for life insurance, no doctor really has any information on their hearts. However, we know that they aren't perfect, so what do we say in answer to the insurance questions? Do we fib? Probably. I also didn't want them getting jobs and starting their own health insurance with "pre-existing" conditions. So. I know what's going on. They have NO symptoms, NO murmurs. I can guide them some and keep prodding them to have doctors listen carefully to their hearts since I had the BAV. I know that they are safe right now. They have watched me deteriorate and then be operated on successfully, so they're fine with the vague knowledge about themselves. It isn't affecting them.

As for life insurance. Since I was told early on (late 20's) that my BAV wouldn't affect me until my 70's if at all, I had no problem getting life insurance after the BAV was discovered. There was no disease at the time. Only the defect.

Hope this helps abit, Lyn. I think knowledge is power. Parents have a responsibility to guide their children and keep them safe.

Marguerite

 

[Turkey Hunter]

I sincerely appreciate that nobody has taken offense to my original post. I would NEVER want to come off as if I feel like I have the right to tell anyone else how to parent. I just felt like it is a fair question to ask and might spark an interesting debate...

It is a good question.

I was one of those kids whos parents found out when I was about 2 that I had BAV. I had annual trips to the big city to see the docs and have them tell my mom I wasn't going to be very big, or be able to anything physical, or.......
Well, they were wrong (i'm 6'6" @ 165#) & my parents (thank God) allowed me to participate in all of the sports I wanted. I wreslted and played football all through school. I continued to be very athletic after high school. As a matter of fact when I was climbing onto the OR table to have my Ross procedure the surgical team was asking me about supplements, since it was obvious I was an avid weight lifter.

On with my reason for posting:

I am glad I new as I was growing up, yet as a parent I felt I had to know whether my children were going to be facing a similar or worse condition. As a matter of fact I pretty much demanded my brothers have their children checked as well. It is always better to know of a potential problem and deal with it in stride with your daily choices, than t get hit out of no where with a major problem that is more difficult to deal with medically than it may have been a short time before.

 

[ClickTicker]

I know in the big picture ie life and death it isn't that signifigant, but I was wonderring if anyone worried about insurance issues before they had their kids tested? i only ask because we have never been able to get Justin life insurance, so I think if people get their kids w/out symptons screened, i would try to purchase life insurance before incase it turns out there is a "heart condition' so you /they don't run into problems w/ the preexisting clause
I am in no way saying people shouldn't get their kids screened, i've bee working for years to try to get every newborn screened for CHD because of the stories like hank gathers and the deaths from sports and disney because of undetected chds. I just would play it safe and get insurance first Lyn

I was able to obtain 20 year term life no problem even after having my valve replaced. It was a bit more expensive than for your typical non-smoking healthy person - but not crazy. My guess is a smoker would be more expensive than what I'm paying. I was very clear about what I had done and what my understanding of future complications were going to be when I applied. Part of it will be impacted by the insurance underwriters own beliefs and knowledge about particular health issues. I compared policies between several differenct companies. Prices varied, but nobody turned me down. Aside from that, I get group life through work at 6x salary and that requires no physical and is dirt cheap.

One thing I always knew growing up is that my career choices would be impacted by my defect. Working for a large company where health insurance was somewhat affordable and covered a lot was very important to me. Being a sole proprietor for a small business would be very difficult in terms of finding sufficient health insurance.

 

[Lynlw]

To answer Mike.....Endocarditis. Sudden death. Enough said.

To answer Lynlw. My kids are 23, 21 and 18. Doctor's would not check them because there are no detectible murmurs. (ie. I would not be able to get our medical insurance to cover an echo for any of them). I paid cash (mucho $$) for my daughter's echo since she was going off to play college sports. I found a university study (with the help of someone here on vr.com who doesn't post much) and just recently had my boys tested. Those were free. The reports are 2 sentences long (not detailed) but the pictures were clear enough to determine the construction of their hearts. I may get copies of the tapes and a fuller report, but I can tell I'll have to bug the research cardiologist to get them and may not bother. All 3 kids have different "problems" with their hearts. None have my BAV. One certainly needs antibiotics now (MVP) and another has very mild AI and it has been suggested she needs antibiotics from a cardio, but doesn't need them says her PCP. The third, with an enlarged heart, has me completely baffled so I just told him to stop lifting weights until I can figure it out.

Herein lies the dilemma. When they go for life insurance, no doctor really has any information on their hearts. However, we know that they aren't perfect, so what do we say in answer to the insurance questions? Do we fib? Probably. I also didn't want them getting jobs and starting their own health insurance with "pre-existing" conditions. So. I know what's going on. They have NO symptoms, NO murmurs. I can guide them some and keep prodding them to have doctors listen carefully to their hearts since I had the BAV. I know that they are safe right now. They have watched me deteriorate and then be operated on successfully, so they're fine with the vague knowledge about themselves. It isn't affecting them.

As for life insurance. Since I was told early on (late 20's) that my BAV wouldn't affect me until my 70's if at all, I had no problem getting life insurance after the BAV was discovered. There was no disease at the time. Only the defect.

Hope this helps abit, Lyn. I think knowledge is power. Parents have a responsibility to guide their children and keep them safe.

Marguerite

I agree w/ what you said and just want to say justin is my only child, so i didn't have to decide wether to get other children tested. I just wanted to bring it up so others might consider buying some form of life insurance even if it is a small policy before they get their child tested or at least know that it MAY be hard to get life/health insurance if the echo picks up any CHDs, Lyn