Sunday, March 4, 2012

Bicuspid Aortic Valve and A Grandmother's Heart

The following is a fictitious letter, based on the experience of a bicuspid aortic valve family. Only personal details have been changed to protect their identity. All names are fictional, and any resemblance to anyone living or dead is unintentional.


Dear Bicuspid Aortic Foundation,

I am one of those people with a bicuspid aortic valve that have never needed surgery of any kind. My health has been good, and I am now in my ninth decade of life. But I have to tell you that to my great sorrow, I lost many of my family members to sudden death, some of them at a young age. Two things seem to run in our family: "heart trouble" and aneurysms. All of my brothers and sisters died from just these two things, and I am the last one left.

My brothers and sisters and I were all quite young when we lost our older brother, Tom - the first sudden death in our family. He was always so healthy. One day, he just "dropped dead". They said it was a heart attack. He was only 36 years old. Somehow his wife and little ones made it through those hard years without him. It is a long time ago now, but remembering still hurts. Children need their father.

I had two other brothers who lived longer, Peter and John. When they died, John at 66 and Peter at 74, we were told they had heart attacks, too. Then my sister, Mary, died at age 64. It was sudden too, but this time we knew it was not a heart attack - they told us that Mary had an aneurysm in her chest.

After so much sudden death in our family, I was so glad to still have my sister Jane. She died later -  suddenly - of a brain aneurysm.

Today I heard that one of my grandsons has a heart like mine. He is a healthy young man, athletic, and the father of three of the cutest little boys - my great grandsons. Lately though, he had some pain in his chest while exercising. He went to the doctor because his voice became strangely hoarse, and sometimes he seems to have trouble swallowing his food. The doctor heard a murmur, and that is how they found he has a bicuspid aortic valve. They told him it is leaking - I hope it is not too bad. Thinking back, I remember now, too, that my granddaughter, Sarah, one of his sisters, was told that she had a heart murmur when she was a little girl.

 I have not said this to anyone in the family, but I am so afraid for my grandchildren, and even my great grandchildren. I have lived many years with a bicuspid aortic valve - but so many in our family have died these terrible, sudden deaths.

My grandson, Andrew, is going to see a special heart doctor soon. He is about the same age as my brother Tom was when he died suddenly. Surely, they must understand more by now. Surely they can help him. Just like it was back then, today there are children - three little boys - who need their Daddy very much.

Do you think that some day there will be answers for families like ours, with "bad hearts" and aneurysms? I am praying that day will come soon. I am old now, and I know that I may not live to see it. Please remember my family, and others like us everywhere, when you meet someone with a bicuspid aortic valve. Some of us are blessed with good health, but our lives are shadowed, our hearts broken, with sorrow and grief when we suddenly lose those we love so much.

Yours very sincerely,
Andrew's Grandma

Post Script:

In this one family, two sisters died of aneurysm - one of the brain, one in the chest. Three brothers died suddenly of supposed heart attacks, not verified by autopsies. One sister remains alive in her 90's, with a known bicuspid aortic valve. This woman's grandson, an active, athletic man in the prime of his life, has been  diagnosed with  a leaking BAV, and was symptomatic in his chest with exercise, along with other symptoms that have been attributed to GERD.

It is well to remember that for every person with a bicuspid aortic valve that may live a long lifespan, there may be others in that same family who will suffer very different fates.

May we be moved to find answers,
for this Grandmother and her family
and for other families everywhere, 
creating a climate of hope.

Arlys Velebir
Bicuspid Aortic Foundation

3 comments:

  1. My daughter 29 is having BAV. At 23 she had undergone valvoplasty and doing well. She goes for regular check up and nothing adverse has yet been found. Our family has no record of heart ailments.
    My question: how much is the likelyhood of her descendants developing BAV given that she hasn't inherited the heart ailment.
    -Ashutosh
    Kolkata India

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  2. Regarding the question about inheritance and bicuspid aortic valve, there are studies underway that may continue to shed more light on this. Here is link that may be helpful http://valleyheartandvascular.com/Thoracic-Aneurysm-Program/Bicuspid-Aortic-Valve-(BAV).aspx

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