Sunday, March 18, 2012

Sudden Death and Thoracic Aortic Disease - The Coroners' Cases

I have been privileged to hear great surgeons speak about treating aortic aneurysms in the chest. I have listened intently as they describe calls from the ER that must send adrenalin rushing through them. Someone has a torn (dissected) aorta and help is needed - now!

Only rarely, however, have I heard them speak about rupture. The reason is simple. Generally, these people are already dead.

I have also heard surgeons talk about replacing and repairing aortic valves. Yes, there is a great deal for them to describe, discuss, and even to debate. However, once again, I have rarely heard them speak about a certain group of individuals. These are people who "drop dead" suddenly - people who have aortic valve stenosis. This paper from Taiwan published in 2007, mentions that of known deaths from aortic stenosis, 20% of them are sudden.

These are the coroners' cases.

This week I spoke to a woman whose father, out fishing with a friend, took just three steps and dropped dead. It was just a week ago. He was 58 years old. Those of you from BAV families will recognize him - strong, healthy, never sick - but he also never knew he had a BAV. It was left to the coroner to advise the family, in no uncertain terms, that they should all be checked. Shocked and fearful, they are searching for understanding and support.  They want to be sure that this does not happen to anyone else in their family.

Sudden Death and Aortic Rupture
I remembered again the first time I spoke to Stacey Grieshop, years ago now, about the loss of her husband, Doug. Doug's death was such a shocking blow.  It was the coroner who had told Stacey "I don't know why your husband died" and proceeded with an autopsy. It was the coroner who found the reason, in Doug's aorta and in his heart - the break in his bulging aorta, and a bicuspid aortic valve in his heart. Doug's aorta had ruptured.

Sudden Death and Aortic Valve Stenosis
I also remembered a more recent conversation, just over a year ago, with a grief-stricken young widow. She had found her husband dead in their home. The autopsy showed that his aorta was completely intact. He had been diagnosed with bicuspid aortic valve stenosis just a few months earlier. How could something that seemed relatively benign at the time kill him without warning? He was 40 years old. His wife and their three young children were left alone, in the new home they had just purchased with such happiness.

Telling It All

Brent Warren
It is wonderful to tell about the happy outcomes, the victories over thoracic aortic disease - Bob Gies' return to biking and skiing. Derek Owens' return to basketball. Brent Warren playing baseball.

They have resumed exceptional, active lives following their surgeries. We are enriched and inspired by their lives. In their experiences, we find hope.

But we must tell all the stories, including those so distressing we cannot bear them. We do it to mourn them, to remember them. We do it to remind everyone that there must be a way to identify these people, to help them before they become a victim. We do it in hopes of saving others.

 Aortic Rupture at 19

"Volleyball court rebuilt to memorialize Duquesne U. student"  For anyone coming upon this headline, they might wonder what could have happened to such a young person. The reason is given in this moving Duquesne University account of family and friends gathered in the Duquesne Chapel,  Student remembered for zeal, humor . Many will recognize in Murph so many characteristics found in those with thoracic aortic disease  - an amazing athlete (as the article mentions "the fittest person on the team"), high energy, full of life. How can this happen?

A Voice for the Voiceless

Sudden death is indescribably horrific. There is no time to say goodbye, no time to save, no time to comfort, no time for just one last expression of love.

At the Bicuspid Aortic Foundation, we must be the voice of those so suddenly silenced by aortic disease. The voice for families and loved ones, who must live with the pain of their loss.

Yes, these are the coroners' cases. And sometimes, in addition to their tragic loss, when there is no autopsy, no understanding, no precautions, others in their families die too.

If you have suddenly lost a loved one, 
 you may save your own life and that of others
by understanding the cause of their deaths
and seeking expertise to help you.

You are not alone in your search. We are here to help you.

Arlys Velebir
Bicuspid Aortic Foundation

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