Bicuspid Aortic Foundation View From Here Fall 2009

BAV has gradually revealed itself in my family.

Slowly, over many years, it has defied the description and reassurances given to us by doctors,
revealing itself to be something different than anyone supposed at the time.

As BAV reveals itself to us, there is something powerful we can do. We can share that information wth others in hope of taking away one aspect of this disease - it's ability to surprize and catch us unprepared, preventing us from taking action ahead of time.

In September 2007, a paper was published that again opened my eyes to just how difficult it can be to understand what BAV is. Here is a link to the abstract. This paper describes 13 families. Each family had at least one person with BAV and Thoracic Aortic Aneurysm (TAA). I recognized that based on this, these were families just like mine. But there was more that was learned from these families, and in 2007 I did not know that my own family would also fit into this newly emerging picture.

In all 13 families, there was also at least one person who had an aneurysm with a trileaflet aortic valve. How could this be? In the beginning, the focus had been on the number of aortic valve leaflets. When I read this, I realized that once again this condition is proving to be more complex than we thought.

This summer, my husband's sister had surgery to replace her aortic valve and ascending aorta. Her valve had always been difficult to image clearly. She resembles her brother in many ways, and it seemed reasonable to me that when her valve was removed and examined, there would be at least some fusion of the leaflets. But that was not the case - her valve was calcified and narrowed, but there were three, fully-separated leaflets. She had delicate aneurysmal tissue in her ascending aorta, but despite the fact that other family members have BAV, she was trileaflet.

So, if anyone wonders about more families - yes, there is a 14th family - my family. And no doubt there are many, if not all other BAV families, like this as well.

Now we understand that a BAV in one family member puts all family members on guard, watching for the most dangerous things we know about - dangers from weak, abnormal tissue in blood vessels - the aorta and vessels in the head and neck - as well as problems with heart valves that may or may not on the surface appear normal.

So, what is BAV? It is a warning sign to blood relatives,
regardless of their number of aortic valve leaflets,
that they may be at risk of aneurysm and dissection.
The vessels generally known to be at risk are
the aorta, and the vessels of the head and neck.

Is there any good news?

Yes, today we do not have to wait until a blood vessel tears or ruptures.
We can look inside the body, discover the danger,
and seek treatment before disaster strikes.

In proactively understanding what BAV means and seeking help,
we live in a climate of hope.

Sincerely,

Arlys Velebir

Chair, Board of Directors
Bicuspid Aortic Foundation

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