Kids got my BAV?

[amy00]

I have congenital BAV though no one from my big family has any heart problem. I have no kids. I'm wondering what the possibility is that my kid inherits my BAV. I have seen some document which talks about it. But can we have a little survey here? I'd really appreciate if you could let me know what your situation is. To make things simpler, I would list out the possibilities, so it saves you some typing.

1. Do you have congenital BAV?
A. Yes. B. No.

2. Does anyone other than you in your family (including indirect relatives) have BAV/heart problems?
A. Yes. B. No.

3. How many kids do you have?
A. 0 B. 1 C. 2 D. 3 E. 3+

4. How many of your kids have BAV/heart problem?
A. 0 B. 1 C. 2 D. 3 E. 3+

Thank you for your time.

Amy

 

[aussigal]

I would have to look up the hereditary characteristics of BAV but I recall something along the lines of 75% chance of passing it along and then if you do pass it on once there is an even greater chance of having more children with a BAV and/or heart troubles.

I have a BAV and my eldest son has a BAV, the middle son has mild MVP and our youngster also has a BAV. We seem to have hit the jackpot, all 3 of our sons have heart conditions that are being monitored. Currently our 2 BAV sons are of more potential concern and monitored more frequently but Mitral valve issues could be just as troublesome.

My dad died of a heart problem thought to be a dissection and his mother died of a brain aneurysm and his father heart trouble.

1. Yes
2. Yes
3. 3
4. 3

 

[harleygirl528]

This really, really scares me! I am 12 weeks post-op from OHS for an aortic aneurysm and aortic valve repair. I had no idea I even had a problem other than a very mild heart murmur (didn't even know I had a BAV) until I had an MRI of my spine and the aneurysm was found.

I do indeed have BAV which resulted in my 4.9 cm aneurysm and I know I need to get my 4 kids tested. I was just wondering at what age do they recommend the testing? I know my oldest needs to get tested but what about the 9 year old?

I am also a bit hesitant to use an ECHO as a definite testing tool for BAV and aneurysm....since I had several ECHOS over the course of seven years and never once was I told I had BAV or an aneurysm. I am skeptical of the reliability of an ECHO to diagnose BAV or aneurysm.

1. Yes
2. Not that I know of...heart problems YES...BAV....no
3. 3+
4. None that I know of...haven't had them tested yet.

 

[Cooker]

No Kids here.....
My fathers mother had BAV, my father had BAV and I have/had BAV.....But there are many who have BAV and their kids don't.....Not much help I know.....Oh and by the way welcome to the zoo

 

[Ross]

I was discussing this with my Cardio. There is a definate genetic link, but he didn't have figures to present. I know I have a hereditary lung disease that I knew nothing about until after all 3 of my kids were born. Now I'm expecting a grandson in June and I worry deeply that this disease is going to affect him. There is just no way to tell.

 

[Mary]

Amy,

We've had several comprehensive threads dealing with this issue. If you do a search, you should find them.

I think Cooker said something along the lines that we have many members who have bicuspid aortic valves, but the children don't. I'd like to point out that many members don't have children old enough for the valve to be diagnosed or they haven't had their children tested. This is an area of investigation that I think will significantly increase as members stay with VR following replacement and turn their attention to the next generation in their family (like Ross).

So, to answer your questions:

Yes, I have a BAV
Yes, one child has a BAV
I have 5 children
3 children have been tested

I have also seen a medical study where in families with BAV, at least one family member, who did not have the bicuspid valve, did develop an aortic aneurysm.
I think PJmomrunner posted the link, but I'm not positive.
If anyone else can track it down, I'd like to bookmark it myself to show my cardiologist.

 

[Andrew'sMom]

1. no murmur ever detected in either my husband or myself, neither of us has been scanned yet

2. Yes (multiple MVPs, multiple ascending aortic aneurysms & descending aortic aneurysms)

3. I have 4 children (boys)

4. 2 (#s 2 & 3) of my 4 kids have BAV, #2 has dilated ascending aorta as well. (#1 has no murmur & has never been scanned; #4 has a murmur but echo showed no structural defects).

 

[KAJ]

1. Yes - BAV
2. Yes
3. 4 kids
4. 1

We cannot help but wonder about our other relatives. They have all been notified by not sure if all have been tested. My identical twin brother does not have it. We are glad he does not but thought surely he would have it.

Karl

 

[Leah]

1. A - I have congenital BAV but not diagnosed until age 53.

2. Anyone else in my family? Unknown. But no forbears were explicitly diagnosed and no one keeled unexpectedly. (Father lived to 91, had quadruple CABG at 85 but never took care of himself on diet/exercise front. He had Aortic Stenosis late in life but I think it was presumed to be age/cardiovascular related. Mother is 92 and only has controlled high blood pressure, but had some not-fully-diagnosed chest pains and arrhymias in mid-life that did not progress or ultimately prove life-threatening.

3. B - I have one child, in 20s.

4. Unknown - but I will ask her to at least know about the possible genetic connection and ask docs to be aware of heart murmurs etc.

 

[Susan BAV]

...My identical twin brother does not have it. We are glad he does not but thought surely he would have it...

----------------------------------------

I would think this fact should be extremely interesting to any/all doctors studying the possible inheritability!!!

----------------------------------------

I was born with a bicuspid valve;

My paternal family has some heart and valve problems but there are no other known or suspected bicuspids in my extended family of mostly male members;

I have two sons, one whom appears to have some Marfans characteristics but does not have a bicuspid aortic valve, and the other son hasn't been specifically tested for such.

-----------------------------------------

BTW, is it selective analysis on my part or do the majority of children of bicuspid patients on this site seem to be male? Any thoughts?

-----------------------------------------

 

[thenewmarket]

1. Husband has BAV
2. No one else in his family has BAV
3. We have two daughters ages 20 and 25
4. Daughter age 20 has been tested no BAV detected. Second daughter in the process of being tested.

Excellent, interesting survey. My husband had NO IDEA about his BAV/aneurysm until it was found in a routine chest x-ray. He was the absolute picture of health (age 51) with a 5.1 ascending aneurysm lurking. We are blessed that it was found and we enjoy each and every day we are given!

 

[Leah]

4. Daughter age 20 has been tested no BAV detected. Second daughter in the process of being tested.

When you (singular and plural) say "tested," what are you referring to? An echo? More invasive testing? As I understand it, the echo isn't definitive though it can point strongly.

Since I also have a young adult daughter, am interested...

 

[francie12]

My son has the BAV. His father and younger brother both have dilated ascending aortas, but no BAV. All testing (except Matt's subsequent MRA) has been done by echo.

 

[Gusdog]

Great topic

Great topic

1. Yes, had BAV unknown to me until this past January.

2. No, not that I know of. My dad had AVR and aneurysm repair about a year before I did, but no BAV. Grandmother had AVR and aneurysm repair in 2000, but as far as I know, no BAV.

3. 1 child, daughter aged 7

4. Unknown. We are going to have her tested, probably with an echo. I have 2 godchildren (no relation to me) with BAVs, and their brother (also my godson) has Hypoplastic Left Heart Syndrome.

I mention this because it is affecting our decision about having other children. I've been wanting to have another child for a few years, while my wife has been reluctant. Now that I know about my own CHD, not only am I scared that my daughter has a BAV, but I'm also afraid of potential CHDs should we have another child. We've learned that a BAV is not ideal, but it certainly isn't the end of the world. But would it be irresponsible to roll the dice knowing the potential for more serious problems?

That's mainly a rhetorical question, but I welcome anyone's comments.

Adam

 

[Resqrn]

i had BAV, mother and her father passed away (55 and 45) probably from aortic dissections (unfortunatly no autopsies). They presented very closely to my ER presentation. 1-10 year old daughter. Echo revealed normal aortic valve at age 8. we will follow up when she is a teenager with an MRI, but will wait till then. my brother and sister are clear CT's Echos done, their children unchecked as of yet. the research is being done and hopefully will be avaliable to the general people in the near future.

 

[Arlyss]

Study of 13 Families

Study of 13 Families

I believe this is the reference Mary mentioned. The last two sentences of the abstract are extremely important.

Title: Familial thoracic aortic dilation and bicommissural aortic valve: a prospective analysis of natural history and inheritance.

Link follows

http://www.ncbi.nlm.nih.gov/sites/e...ez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Dr. Dietz, one of the authors, is well known regarding the genetics of Marfan Syndrome. He and Dr. Loeys identified a new connective tissue syndrome in the last few years, which is named after them.

Best wishes,
Arlyss

 

[surfsparky]

1. Do you have congenital BAV?
A. Yes.

2. Does anyone other than you in your family (including indirect relatives) have BAV/heart problems?
B. No. Although my parents and siblings have not yet been tested.

3. How many kids do you have?
3

4. How many of your kids have BAV/heart problem?
2 have been tested and are both fine. One still needs to be tested.

And Susan, to answer your question,I am a BAV patient and have 3 children...one son and two daughters....girls the majority in our little family!

Chris

 

[aussigal]

I think most of us mean an Echo when we speak of "testing" our families and kids. Some may think this isnt quite good enough, I would say do what you are comfortable with....in our case the boys all had echo's by the same technician and the 2 BAV's were easily seen.

My Cardio's speciality is Echo's so I was happy to leave the diagnosis to him and his team and not go further and have CT scans etc. In the future I will re-visit the suitability of CT scans for the boys as they approach adulthood. One of our BAV boys has a co-arctation with a fused Bi-cuspid valve and the other one has a true Bi-cuspid valve and the beginnings of an enlarged Aorta, both have different types of murmurs.

I dont really understand why some parents say their child isnt old enough to be scanned. It only takes an experienced technician a few minutes to find or rule out a BAV. Why wouldnt you want to know as soon as possible that your kids heart was OK?...As soon as I knew this BAV stuff was heritable I was on a mission to get our kids scanned so that hopefully it was something we wouldnt have to worry about anymore.

 

[Mary]

I believe this is the reference Mary mentioned. The last two sentences of the abstract are extremely important.

Title: Familial thoracic aortic dilation and bicommissural aortic valve: a prospective analysis of natural history and inheritance.

Link follows

http://www.ncbi.nlm.nih.gov/sites/e...ez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Dr. Dietz, one of the authors, is well known regarding the genetics of Marfan Syndrome. He and Dr. Loeys identified a new connective tissue syndrome in the last few years, which is named after them.

Best wishes,
Arlyss

Yes, this is the link I was referring to. Thank you, Arlyss, for posting it.
It concerns me, because my cardiologist has said the only risk to our children is if they have a diagnosed BAV. He said, "Without a bicuspid aortic valve, there is no anuerysm." I believe he is a good cardiologist, who stays fairly current with the research, but in this instance, I think he's wrong.

 

[Bill M]

I went undiagnosed for a Bi-cuspid aortic valve till I was 25. The first echo I had with a good cardiologist saw the bi-cuspid valve, and from my high uncontrolable blood pressure, relized i probably had a coarctaion, sending me for a MRA which confimred his findings. I had the coarctation repaired with a graft 5 yrs ago, and this past january on a routin annual echo he spotted a aortic root aneyuism 6cm. Sent me for a cardiac-Ct scan again confirming his findings. I had the aortic root and valve replaced this past march.

They have discovered the genetic markers, don't know if they test yet but I am seeing my surgeon next week and will ask if they are testing. He is one of the leading aortic surgeons and I beleive headed the reasearch.

Nobody in my family seems to have any heart troubles, besides later on set high blood pressure. No kids.