BAV -- poll on passing it on

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BAV -- poll on passing it on

  • I have BAV, am female and have kid(s) with suspected BAV

    Votes: 2 6.3%
  • I have BAV, am female and none of my kid(s) have BAV

    Votes: 10 31.3%
  • I have BAV, am male and have kid(s) with suspected BAV

    Votes: 3 9.4%
  • I have BAV, am male and none of my kid(s) have BAV

    Votes: 12 37.5%
  • No BAV

    Votes: 5 15.6%

  • Total voters
    32

sylviayasgur

VR.org Supporter
Joined
Sep 1, 2001
Messages
2,265
Location
Westchester, NY
hi all,
posted on behalf of joey.... bav and fortunately both our daughters are fine.
great poll, burair! glad to see you're doing well.
take care, sylvia
 
B

Barb

Guest
Well, i am taking both of my boys(aged 1 and 3) to the pediatrician tommorrow. I will ask for a req. to get a n echo done on both of them plus my daughter.
I am sure that the referral will take a bit of time, but when i find out i will post and let you all know what the results are.
I have a sad inclination that this condition(and most) are genetic.........especially with a mother carrying a baby in vetro.............how can most of the conditions not be passed on?.?.?.?. I really and seriously believe that most things ARE hereditary
This is just me, and u better believe that until i see for myself, that my children dont have these "Sh_TTy" conditons i wont be satisfied.....

Has anybody heard that dark circles under eyes, or a prominant vein on top of nose indicates a heart problem?? 2 People have told me this even before i was diagnosed(3 weeks ago). My 1 year old has the vein on the bridge of his nose.
 

MrP

Well-known member
Joined
Dec 12, 2005
Messages
304
Location
California
bicupidfoundation.com

bicupidfoundation.com

I'm new to this forum, so please forgive me if this is redundant to many of you. If you haven't already checked out www.bicuspidfoundation.com, I highly recommend reading many of the very well written descriptions of BAV and excellent advice and medical articles.
With respect to your poll, I suggest adding a question about parents of those with BAV instead of restricting your poll to offspring of BAV patients. And children often have not been diagnosed or diagnosis is difficult...bav is often not detected on echocardiogram tests.
My BAV was inherited from my father's side of the family and his father's side of the family.
 

aussigal

Well-known member
Joined
Oct 6, 2005
Messages
2,354
Location
Perth, Australia
Barb.
I have very obvious veins...like a road-map al over my chest and abdomen..havent heard about the nose one tho...and I have had dark circles under my eyes for at least 15-20 years if not longer...one of my bav sons...steve also has the chest-road-map! I had to see the boys' scans for myself and was quite an expert by the end of it all...saw 8 echoes in about 3 weeks and I was clearly able to tell which boys of ours had BAV's and the one who didnt...also us 3 BAVers have the same noisy hearts too...;)


Hi Preston...welcome :D
PS...we BAVers all love The BAVD website....and Arlys who is a treasure...:D
I had no trouble seeing the kids BAV's on the echoes we had done, and could even tell benj. escaped with MVP...if you can call that an escape :rolleyes:
 

MrP

Well-known member
Joined
Dec 12, 2005
Messages
304
Location
California
notch1 gene mutation

notch1 gene mutation

In my last reply, I forgot to mention researchers at UT Southwestern Medical Center reported in July 2005 they discovered a mutation on a gene called notch1 is linked to aortic valve disease, including BAV. If anyone is interested, I'll provide more information about their research.
 
B

Barb

Guest
OH yes, i too have a very veiny chest. When i was pregnant it was incredible. I am all around veiny though, so does this count.?.?....Hahahah!!
I also have dark circles on the inside of my nose, (inside corners of eyes)but not so much under my eyes.
 

Turkey Hunter

Well-known member
Joined
Jun 11, 2001
Messages
799
Location
The Great Buckeye State
Have two children with no BAV or murmur..... Yet my brother has had 3.5 children (one on the way) and has had one with a murmur at birth.

My paternal grandfather died of... what was stated to me "aortic valvular inadequacies". Who knows what it really was back then. They didn't do any post death research.

I just will keep an eye on my grandkids....as long as I am around to do so !!

God Bless.

Ben
 

Warrick

Well-known member
Joined
Dec 27, 2015
Messages
425
Location
New Zealand
I was reading up on Turners syndrome, reading some of the cases breaks my heart.
But anyhow I came across this “zombie” poll from 2006
Thought it should continue especially for us newer members with BAV and children.
My 3 kids have no BAV but I think my 2 boys have some signs of related conditions.
 

Duffey

Me and Granbon
Joined
Sep 29, 2004
Messages
5,012
Location
Far side of the moon
Warrick, I am/was forum member, Mary, in this resurrected thread and poll. Thirteen years later, I have a BAV, one son also has a BAV, and we’ve now got a 10 year old grandson with a BAV.
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
6,057
Location
Queensland, OzTrayLeeYa
my personal conviction that BAV was gene linked (before it was established) formed a large part of my motivations in why I did biochem and had a focus on genetics. However back at that time genetherapy was a more distant hope than CRISPR has made it today (and the tools of the day were crude). I remain unsure if fixing it (the genes) will be simple, but I'm sure it will be done one day.
 

Warrick

Well-known member
Joined
Dec 27, 2015
Messages
425
Location
New Zealand
Thanks for the backfill @Duffey.
My daughter is fine but my boys are extremely tall with long limbs, and one crowded teeth, which I believe are some of the indicators for marfans.
 

Superman

Well-known member
Joined
Oct 3, 2009
Messages
704
Location
Grand Rapids, MI, USA
I know it’s old, but there really should be two genders with three options. Yes/No/Unknown. Putting all the unknowns in the ‘No’ group underestimates the heredity of the condition.

Two of my boys show a mild presentation, for the record. If it weren’t for me, we would have zero reason to check at this point. Health is good, and neither have a detectable murmur.
 

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