First-Line Relatives

[Bracken]

On February 22 when I received my diagnosis of a bicuspid aortic valve my cardiologist advised that all first-line relatives get tested. My parents, brother, sister, and kids got tested. All cleared, except for my 18 year old daughter. Found out today she has a bicuspid aortic valve, courtesy from me. She also has a slight regurgitation. Nothing significant right now, but obviously it will need to be monitored annually under the care of a cardiologist.

Naturally I'm bummed. I know how common this congenital defect is. I know how common the surgeries and procedures are to correct the defect. I know a person can live a long life before even needing surgery. But as a parent I want the best for my children and I obviously would have preferred that my daughter not have to deal with this throughout her life. Well, at least she has me to help her through it as I've become an unwilling subject matter expert.

Ugh

 

[Heart Of The Sunrise]

It is understandable that you are bummed. But, your daughter is fortunate to have found out. It was only after the fact and some research that I put together that my late father had it. I had a nephew who had it and had surgery at age 2 months to turn his bicuspid valve into a normal valve. In light of these facts and that it has not skipped a generation in our family, everyone is getting checked especially those younger nieces and nephews. My great-nieces and great-nephews are also aware of the critical necessity to get tested. Your daughter also has the comfort of knowing how well you did with your surgery. Cardiac care continues to advance. She will do just fine should the time come for surgical intervention.

 

[tom in MO]

In a paper on untreated bicuspid valve mortalities, the age of death was 18 to about 80, with the median at about 50-55. Look on the bright side, your daughter could have many good years and possibly her whole life go by before she would need a replacement valve. Now that she knows of the problem, she will be safe. It will also open her eyes to the need for good medical insurance, which is a good lesson for a young person in the US today.

 

[ccamp708]

I was diagnosed with AVS/bicuspid valve at 2 months old and have been followed my whole life. Both of my children were tested as soon as they were born (well actually fetal echoes too). Interestingly my daughter has a functional bicuspid valve. Thankfully no stenosis. We will have regular follow ups for her with my former pediatric cardiologist, who was my doctor too until a year ago. I now see an adult-congenital specialist who is part of the same practice. There is definitely genetic correlation with these defects! I am so grateful for the care and attention my doctors have given me over the last 30 years. I had my valve replaced a little over 2 weeks ago, and the journey has truly been a good experience. I have learned to see my heart defect as a gift, not a burden. And I realize how blessed I am to live in a place where good medical care is available to me and my daughter!!!

 

[lubdub]

First-Line Relatives

Hi,



For those who have been diagnosed with BAV and an aortic aneurysm these traits can occur in different combination within a family. For example, I was diagnosed with BAV and aortic aneurysm but my brother was found to have a normal aortic valve with a dilated aorta.







Dougall

 

[CarolM]

I also had a bicuspid valve and replacement surgery in October, 2012. My siblings were tested, and all were clear. Two daughters are clear, too. Unfortunately, my 27-year-old son also has a bicuspid valve. No negatives yet, but will of course now monitor annually. Yes, I feel "guilty", too, although my brain knows it is out of my control. Life is full of surprises--I'm glad we are aware of this potential risk. For heart disease, ignorance is NOT bliss!

 

[canon4me]

Can BAV skip 1 or 2 generations?

 

[ElectLive]

Can BAV skip 1 or 2 generations?

Yes, absolutely, as can relatives with aneurysm development but no BAV.

 

[lubdub]

First-Line Relatives

Yes, absolutely, as can relatives with aneurysm development but no BAV.

One of my brothers has a dilated aorta but no BAV. My other brother is ok but he is still is going to have a regular echo to check his aorta. Probably good practice for any 1st degree relatives of BAV / aortic aneurysm patients.