Saturday, February 16, 2013

Heart Month 2013 - Remembering Kyle Wilson

Bicuspid Aortic Valve (BAV) is the most common birth defect of the heart. For centuries, it has been responsible for death and suffering. In spite of surgical solutions for the aortic valve and bulging aorta, BAV continues to cause suffering and death in the United States and through out the world.

In December 2007, an apparently very healthy 36 year old swim coach suddenly collapsed and died.  His name was Kyle Wilson. Kyle's story is touchingly shared here by his brother on his Outdoors Blog.

As you read about Kyle, look at his pictures, you get a great deal of insight into those with BAV. They are very special people. Often very active and athletic, they are intensely passionate and focused on their interests, and very good at what they do. Generally they glow with health, and may rarely visit a doctors office. But they were born with a BAV, and at some point there is a potential for what happened to Kyle to occur.

 Not every BAV makes a sound, and that murmur may not always be present or detected. But for anyone who was ever told they had a heart murmur, it is well worth being checked. As his brother wrote, Kyle might still be coaching swimmers today if there had been follow up on his murmur. Here you can read about the scholarship for swimmers that has been established in honor of Coach Kyle.

The same year that Kyle died, 2007, a paper was published by doctors from London's heart hospital. You can read about it in this blog post, Where Are the BAV Children Now?

Tragically, we know what happened to one child with BAV, Kyle Wilson. Kyle's voice has been silenced. But what happened to him is a resounding message, not to be ignored, as we honor his memory during Heart Month 2013.

In loving memory of Kyle Wilson,
we share his story to help others
and create a climate of hope.

Saturday, February 2, 2013

Great Hearts and Bicuspid Aortic Valves

Dr. Sharo Raissi, Scientific Advisory Board Chairman,  Arlys Velebir, BAF President,
 Dr. Jason Sperling, Scientific Advisory Board Member

Who can help us?
Who do we turn to when a bicuspid aortic valve appears on the scene? Who can help us? It is a question that my family first confronted over 20 years ago.

At that time, my husband was treated in our local medical community, where we first heard the words "bicuspid aortic valve". Other than being told this is a birth defect, nothing in particular was said. My husband received the typical treatment for younger people at that time, replacement with a mechanical valve. We were told he was "fixed" - just take his coumadin (warfarin) faithfully, watch out for infections, and he was set for the rest of his life.

My sister told me about friends of hers back then. The man's aortic valve had been damaged by rheumatic fever. He had it replaced with a mechanical valve and was doing very well. I remember how it comforted me and gave me hope that my husband could be helped too.  

I asked her about this man recently. He still has the same mechanical valve, still takes his anticoagulant, and is doing well. 
That was supposed to happen to my husband too. But it didn't. 

You see, bicuspid aortic valves are "special" and those who have them need special care. As someone from Australia wrote, BAV families have "dodgy" tissue.  The definition of dodgy is very appropriate  - "unsound, unstable, unreliable" and "so risky as to require very deft handling".

Later, when my husband's aneurysm was discovered, we began to understand we were dealing with something "dodgy", and it was going to take some very special help to get through this. Later still, there were more complications.

Great Hearts, Skilled Hands
And so, that is the background, the reason for my smile in the recent picture above, standing between two surgeons who have tremendous hearts and skilled hands, hearts and hands that care for those with BAV. 

I know, so many years later, that is what it takes. Hearts big enough to spend so much time, to give of themselves tirelessly. Spending an hour with you for your first consultation, reading your CT, MRI, and echo  themselves, helping you with blood pressure, answering your questions, and grappling with everything that makes you special. And some day, performing surgery on that dodgy tissue. How dodgy? Well, in my husband's case, it meant taking on yet another, high-risk surgery to deal with pannus and valvular strands on his mechanical valve. Something few have ever heard about, seen, or handled. So far, it has given us an additional 7 precious years together.

What to Look For
At the Foundation we are often asked who can help those with BAV and other forms of Thoracic Aortic Disease (TAD).  It remains a difficult question to answer. Knowledge and technical skill are a must. But there are some other important things to consider.

It should be someone with a heart
 for aortic disease in the chest.

Someone with a heart so large
 that they generously give their time and talents.

Someone that truly cares for you and your family. 

Someone skilled enough
and fearless enough
 to take on your "dodgy" tissue. 

Captured in the picture above,
I was privileged to stand between
two such great hearts.

Standing there,
I knew I was surrounded 
by a climate of hope,
enveloped in
an atmosphere of caring.

May you find the same.

Arlys Velebir
President, Bicuspid Aortic Foundation