Saturday, October 6, 2012

Bicuspid Aortic Valves - the View from Those Who Have It!

Survival and BAV
From time to time, bicuspid aortic valve studies are published and articles appear in the press, such as this one from 2008, Adults With Aortic Valve Disorder Do Not Experience Reduction In Survival Rate, which mentions following 642 adults, average age 35, for 9 years. 

It is encouraging to read that advancements in surgery and medical technology have helped those with BAV, as mentioned in the article. However, it is also important to understand the BAV experience through those who live it, as long as they live. Robby Benson was born with a bicuspid aortic valve. Four heart surgeries later, he is telling the world about his life with BAV, including this October 4, 2012 article in People Magazine, Robbie Benson: Inside His 'Brutal Experience' of Four Heart Surgeries.  

Beyond Survival
It is important to remember that beyond survival lies the goal of living life to the fullest - something that those with BAV may be denied at some point in their lives. There is a great deal that is not understood about those with bicuspid aortic valves and their families. With time, some of them develop additional complications.

It is nearly 7 years since my husband was injured when fine, hair-like strands of tissue broke away from his mechanical valve and injured the right side of his brain. A survivor, yes, even a miracle, but the life he once knew cannot be fully restored. 

Not long ago, along with a bulging aortic aneurysm, a mechanical valve was removed from a man with BAV - it had strands on it too. I was so glad it was done before his brain was hurt. But it was the second surgery for that man in just three years. Survivor? Yes, but can't life be better for those with BAV?

Remember - There are Those Who Don't Make It
This year I spoke with a man in his 70's who is a true survivor - aortic dissection first and a few short years later replacement of his BAV. Yes, another miracle man! He told me about going to the hospital to visit a young man with BAV who needed a second surgery. This was a young man who had supported him during his own dark times. Calling from the hallway outside ICU, he dropped the phone in shock - his friend was dead. 

And lest we think children are not affected, here is Rylan's story. From the local newspaper, Orion boy, 4, loses quest for new heart, and a memory video here, Rylan Foster. Rylan was born with a bicuspid aortic valve.

Through these stories, may we remember the millions born with BAV.
Among them are those who are delicate and vulnerable, 
who need help that even today may be beyond reach.

May we be their voice, 
creating a climate of hope.
Arlys Velebir
President and Chairman
Bicuspid Aortic Foundation