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Children of BAV patients

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T

teri

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I'm pretty new here...I have written one other post under valve choices. I've been reading through this site for hours now, and I see where many agree that BAV can be inherited. My husband and I have 2 children, a daughter age 19 getting ready to head off to college, and a son who just turned 16. My husband, age 48, will go in for AV and aortic root replacement next month. How many of you with BAV had your kids tested right away, at what age, and how many came back with positive results? I'm wondering about the percentages...and I see that it is more prevalent in boys than girls, but my daughter's doctor already thought she heard a slight murmur last month. She is so worried about her Dad right now, I'm not sure how she would handle the news she may have a problem too. Thanks. Teri
 

Kate

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Jun 29, 2005
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Athens, Ohio
Hi Teri,
I don't have kids but did encourage my brother and sisters to get tested after being diagnosed with my aortic aneurysm. The statistic I have seen (on the Cedar Sinai Bicuspid Aortic Disease website) is that first degree relatives of someone with this disorder have a 15% chance of having it as well, even if they don't have a murmer. So, that includes parents, siblings, and children. Hope this is helpful! Kate

PS My sisters both came back negative, my brother has not yet been tested.
 

PJmomrunner

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SW Michigan
Teri:

My kids both were tested by echo and were negative. Neither had a heart murmur, but because of my history and because their doctor believes every kid who participates in sports should have an echo, they were tested. Having the kids' valves declared tricuspid eases my mind some, but to tell you the truth, I don't believe even the echo is 100% assurance they are actually BAV-free, being as open to interpretation as echos are. I do feel it's valuable to have the echo (which I have a copy of) to compare to any future echos they might require should problems develop--relative to valves or other cardiac issues. I wish I had data for a baseline that showed definitively how large my own aorta and ventricles were two decades ago.

I can't think of any reason you need to get your kids checked before your husband's surgery, unless they are symptomatic. When you do tell them they need to be tested, assure them that even if they do have BAV's, it's likely it will never cause them a problem--if it does, they'll deal with it just like their dad. I would bet the thought that they may also have it has crossed their minds anyway and to know and be monitored may be a relief. My kids were 14 and 12 when they were checked and the older one (daughter) says it had already crossed her mind.
 

Karen

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May 2, 2005
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139
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Salem, Utah
Teri, I have 8 children and only one has been screened for BAV -- routine echo done in a physical with a new internist. The echo showed a normal aortic valve for my 30-year-old son. I asked my cardio about this again just yesterday. He has told me repeatedly that it would be "remarkable" if none of my children has a BAV. But again yesterday, he recommended doing the screening only if there is a murmur or symptoms -- tiredness, shortness of breath. I was given the same advice by the Adult Congenital Heart Disease Clinic associated with the University of Utah. I was told by the nurse at the clinic that they WOULD do echos for my peace of mind. And my insurance would pay for it if the cardio requested it to rule out BAV. But I was also told that it would be good to have life insurance policies on the kids first. It's very difficult to get insurance on them later. So I have taken the approach that they all know to tell their doctors about my medical background and to do the appropriate tests if anything suspect appears. Otherwise, I hope that once they are ALL established in careers with health and life insurance in place, that they can find out for sure... In the meantime, I am not pursuing testing for them.

With your daughter's doctor POSSIBLY hearing a "slight murmur," I think I'd wait until after her dad's surgery and successful recovery :) and then let the cardio take another listen to her. Peace of mind is worth a lot.

Good luck!
Karen
 

Natanni

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Jun 8, 2005
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580
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Northern Minnesota
I hope this doesn't post twice, lost it once!

My hubby had his BAV replaced in Sept 05. We were told by the Mayo to have our kids evaluated for murmurs prior to his surgery. We have a 14 yr old son and a 10 yr old daughter. Our daughter was found to have a "suspicious murmur" and we brought her for an echo 10 months post AVR at the Mayo, and my husband's docs checked it out. I will never for a second regret having my daughter evaluted, no matter how excessive some people may feel it is. My husband's Dad had a heart transplant 15 years ago, and my husband, his Dad and myself were all breathing alot easier when we found out that my daughter's aortic valve was tricuspid and functioning well.

Were were more or less prepared for her to have a BAV, she is every bit her Dad....but the news was very good. When my son is checked for murmurs, he is dismissed very quick, and the Mayo felt no need for him to have an echo. Good luck, and please keep us posted! :)
 
T

teri

Guest
Thanks so much to all of you for your replies. You all addressed my concerns which are: worrying the kids so early in life, insurance issues as they get to employment age, and yes...my own peace of mind. As if it wasn't bad enough to hear about my husband having this problem, it was terrifying to hear the kids may have inherited it. My daughter is asymptomatic, except for complaining about being tired all the time...but she is a teenager!! I do think about her complaints a little more seriously now, so I will have her checked after the surgery and recovery. My son has had a dozen physicals for sports om addition to yearly exams, and never a word about a murmur, but as you all suggested, I'll run him through the routine as well. Again, I can't tell you ~ but you already know ~ how wonderful this site is and how comforting it is to hear from others who know exactly how we are feeling!
Teri
 

aussigal

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Oct 6, 2005
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Location
Perth, Australia
Hi Teri....

I had our 3 boys scanned about 9 months ago . Actually not long after I read BAV ws heritable. It turns out 2 of our 3 sons do have BAV but only 1 has a murmur . They both have "noisy" hearts to listen to on an echo as did I before my surgery...

Our boys havent had their lives changed at all since knowing of their BAV's. Though occaisionally they will use it as an excuse to get out of doing something!:rolleyes: ...They did have a few anxious days when I had an "oops" during my surgery and wasnt very well for a few days but theyre over that now and the fact that I recovwered and am back to normal helps too I spose!.

Do get the kids tested but I would say dont stress-out about it...These 2 boys of ours kinda like the idea of being extra-special....I find it reassuring to know I have had it checked-out for them...I was feeling guilty that I hadnt had them scanned when my BAV was first found.
 

Marguerite53

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May 18, 2004
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Oregon
Teri. Welcome to this wonderful community! I'm sure you are feeling all kinds of emotions as your husband's surgery approaches. It is so great to have such a gathering of success stories, here, to lean on! Please feel free to ask any and all questions. This is a most caring and helpful bunch!

I have 3 children in college. The youngest is an athlete and playing her sport in college. I paid cash to have her echoed because I just couldn't let her start college not knowing. There was no murmur, doctor wouldn't sign for an echo so insurance wouldn't cover it. I frankly didn't care about statistics or probabilities.....if there was one kid out there with a BAV from a parent, then my kid was getting checked out!

It seems that every medical community is different! Some will request an echo if the parent is afflicted. Mine would not. Mine will only echo if there is a murmur or symptoms. That said, I didn't mind paying cash, because the results are mine alone. The insurance company has no wind of them.

I don't know if life insurance has changed in 25 years, but with my detected, healthy BAV (I had quite the murmur, but not detected unti my late 20's), I had no trouble getting life insurance. Once it was diseased, there certainly would have been difficulty. I had no trouble getting health insurance coverage, either...... I don't believe it was even treated as a pre-existing condition. But I've had stable coverage for the last 6 years, and the stenosis came on slowly for me. (my surgery was necessitated by the AS, aortic stenosis).

Just this summer my 2 older children were echoed in a university study on BAV in the family (in Seattle). For me, it's mostly about the fact that knowledge is power. And. Endocarditis seems preventable so I wanted to be sure my kids didn't need prophylactic antibiotics before something as simple as the dentist.

But. as they say...be careful what you ask for. None of my 3 has BAV. But. The oldest, a son, has an enlarged heart (deemed athletic heart by the Research cardiologist, but this boy is not that athletic). The middle, also a son, has MVP!! No murmur. Not very significant, yet, and quite prevalent in the general population. Very good to know, though. And then the daughter has trace AI (aortic insufficiency). So I have more investigating to do with the boys. But I know. I cannot tell you how much better that makes me feel. I know. Every little complaint I hear, or experience they have, or visit to any doctor....... we can check it all against what we know is going on inside of them.

Please do wait until after your husband has gone through recovery. I waited with my boys until after. I had an uneventful surgery and textbook recovery. My oldest, who couldn't be there, said that I really set a great example for my children as to how to approach and survive such a situation. Let your husband's experience (which will be boring and textbook like mine, right?? :) ) be a guage they can refer to before they get any news. My children are unphased by their results. They feel healthy. No doctor has let them think otherwise. Knowledge is power. They know it. They trust me with it.

So, focus on your hubbie for now. Ask some more questions. Breathe!

:D Marguerite
 

PJmomrunner

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Apr 10, 2005
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The oldest, a son, has an enlarged heart (deemed athletic heart by the Research cardiologist, but this boy is not that athletic).
Hey Marguerite, I thought you might find my husband's current cardiologist's view of this issue interesting: My husband had been told by a cardiologist at Mayo that his heart was enlarged (among other things), which alarmed him, of course. He switched cardiologists to one at U of Chicago (so that physicals wouldn't require three days' time and flying) who told my husband something to the effect of: "well, of course your heart is enlarged--your heart rate is 40 bpm, so your heart's at rest most of the time." Meaning, since it's usually in diastole, of course it's going to measure larger. I don't know if this accounts for all athletes' hearts enlargement, but it does seem to make sense.
 

Squashplayer

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Mar 17, 2005
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New Haven, Connecticut
BAV Family Checkups

BAV Family Checkups

When I learned that my BAV might be genetic, I consulted with my doctors about this very question. My cardiolologist and CT surgeon agreed with my own instinct; and my kids (son & daughter), my sister, and my sister's kids (son & daughter) have all been checked. Happily, all came back negative for BAV, but I don't believe it was an over-reaction or a waste of time or money. My impending surgery had us scared, and we were all enormously relieved by the results of the tests.
 

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