Hereditary BAV??

[katm]

Ever since my diagnosis, I have been worried about whether or not any of my three children have inhereited this condition? They are all adults and know that they need to at their next PE request an echo. My question to members of this forum is, how many of you with BAV have found that your children also have it? I want to know if any of my kids have it but at the same time I am scared to find out? I am one of six children to my mother and father and all have had negative echos for BAV. My mother and father both had extensive heart studies done and were negative for BAV. So I am hoping I was just a fluke and mine is not the congenital kind but just a fluke of nature.

 

[Carol]

My daughter had a unicuspiid valve which she has had fixed. I have bicuspid, not fixed yet and I am 72.I have 2 children with normal valves.

 

[Heart Of The Sunrise]

My dad most likely had it as I knew he had an enlarged left ventricle. This was not related to the cause of his death.
I have a nephew who had severe aortic stenosis and had surgery when he was two months old.
There definitely can be an hereditary aspect to bicuspid valves. Best to have your kids get echoes to find out.
Better to know than to find out once they are symptomatic.

I found out this past October at age 56.5 years old.

I am asymptomatic and found out when a routine EKG revealed a left bundle branch block.

An echo followed and then a cath and a trans-espochegeal echo.

I wish I had found out sooner and maybe I would have just needed an AVR. March 18th I am having the combined ON-X Valve/Aortic Graft done at the University of Pennsylvania.

There is a couple who we frequently sit next to in church. Both her Dad and brother had bicuspid valves. Both have had surgery and did fine.

 

[caligirl]

I have a BAV that was just diagnosed May of last year. My cardiologist recommended my immediate family all be tested, sure enough my dad has BAV as well. My daughter was tested and does not have BAV, and they are waiting to test my son because he is only 2.

 

[pellicle]

Is BAV hereditary? Can it be identified? Can it be avoided or treated?

Vexing questions aren't they.

Well I don't know enough about the previous generations, everyone seemed healthy but then it is quite possible to be BAV and not know till later in life. So its entirely possible that something else kills you first.

It would seem likely that it has a genetic basis, almost everything does really. So assuming that we knew it did , what would you do then?

I made the assumption decades ago that it was. That drove my desires to direct my career into Biochemistry and I was interested in genetic engineering. I would likely have liked to work in identification of the related genes. Things happened in life and I took other directions. But I look back and wonder.

Have you seen the movie GATTACA? Worth a look if you haven't. Presents another view of the issue which I had not thought of back then.

To me the fundamental question is : do we move ourselves towards perfection or do we allow nature to keep doing that? If we choose then what do we decide is perfection?

If a gene therapy was available to you to prevent stenosis or BAV in your kid would you use it? What about a therapy that did something else?

Myself I am who I am as a result of what I lived through. Had I been big and strong as are my cousins would I have become as studious and as thoughtful or would I have just been another bloke playing football and being cocky?

Equally vexing questions

Lastly as a biochemistry student with a personal drive I thought I was perhaps the only one so motivated. As a student of genetic engineering I could of course not have avoided learning about Watson and Crick (the ones credited with discovering DNA, which is quite a story in itself). So I was quite astounded to learn that Watson himself had a reason too.

http://www.guardian.co.uk/education/2003/apr/06/highereducation.uk1

What he did not say at the time was that those couples included himself and his wife Liz. They had two sons, and the youngest, Rufus, had been born with what Watson calls 'undiagnosed serious mental illness that did not respond to medicine', a form of autism which he now believes to be 'epilepsy of the thalmus, which may be cured by an operation'.

I ask him what effect his son's problems had on his involvement in the possibilities of the genome? 'Oh, it was a big incentive for me,' he says. 'I mean the human genome project came right around that time. In 1986, my son was living briefly in an institution, and the day we had our first serious discussion about the project, I went into the meeting knowing that my son had gone missing, had run away. So you can't separate those things. I also knew that maybe some of the problems that afflicted children like my son could be solved on a genetic level. So when we embarked on the genome project, this massive undertaking, I had an idea that maybe sometime you would not have to have parents who lived with 30 years of terrible uncertainty while they tried to find out what was wrong with their child.'

I only learned of this years after I was out of biochemistry and living in Finland (working at the national library)

 

[marc_kowal]

I'm the only one in my family that had a BAV. We had each of our boys get checked at Children's Hospital of Philadelphia (CHoP), and they both were given clean bills of health (thank god!).

Seems like sometimes it can be hereditary, and other times it can just be a fluke occurence. But if a parent has it, it's wise to have the kids checked out so they can take whatever precautions may be neccesary (like pre-medicating before the dentist).

 

[Rachel]

So far I'm the only one in my family to have BAV also and that's a good thing!

When I found out about my condition, I was strongly advised to let my family members (my parents) know so they could get checked out...but I don't have kids so I have no idea if I would have passed this on or not.

Rachel

 

[Cooker]

My cardiologist says it is not hereditary .....

 

[Superbob]

I think the gist of this article is that science doesn't know the answer to your good question yet with 100 percent certainty, but there are indications there may be a genetic link, and further research is underway. Meanwhile, it probably is a good idea for blood relatives to get cardio screenings with that in mind.

Here is the article:

http://www.nmh.org/nm/heart-valve-bicuspid-aortic-valve-family-screening-pregnancy

 

[Superman]

I have two of my five children that show a very mild presentation of BAV. Both are currently functionally normal (no murmur, no stenosis). They have what appears to be a tri-cuspid valve with two of the cusps partially fused. The youngest two have not been tested yet. So I guess 2 out of 3 makes for a pretty strong genetic link.

My parents and extended family have all refused to be checked, even though it was going to be fully paid for as part of a study. Still don't understand that one. Some folks would rather not know I guess.

 

[tom in MO]

I read one paper where they recommend only first degree relatives be screened by echo (that is your brother/sister, mother/father, son/daughter). My cardiologist indicated that from what he read, routine screening of a first degree relative by echo is only warranted if there is another symptom, such as a heart murmur.

 

[carolinemc]

It would not hurt to have them test for this condition or for any heart condition. Heart conditions that are genetic are not death sentences. It just helps to make sure if there is a heart condition, to get the medical attention it needs. Some heart conditions can skip a generation, some develope other heart conditions. Mine is prevailent due to my mother's side has several members within two generations born with congental heart conditions. It never hurts to be tested. If I had not insisted for years for me to be tested for diabetes, I would have never been educated on the disease and worry when one of signs showed up, unquinchable thirst. Good luck to your kids. Hugs for all of you today.