Saturday, August 20, 2016

"No Big Deal" - When Will BAV Be Respected?

This child did not require treatment
 until an adult, but that is not always
the case in those with BAV.
The email below was received
by the Bicuspid Aortic Foundation today.

After so many years of trying to raise awareness,
once again we must ask, how much longer
will it take for the bicuspid aortic valve 
to be taken seriously?

"My son was diagnosed with BAV when he was 10 months old, which was 5 years ago.  At that time they basically told us that it was no big deal, and he would just need to get checked every 5 years.  They told us that people go their whole lives not having any issues.

He just had his 5 year follow up Echo with a new cardiologist and his ascending aorta z score is 3.24, which we were told is moderately enlarged.  When the doctor told me this I just started crying.  How does this diagnosis go from no big deal to now his Aorta is enlarged?

The doctor really didn’t tell me much because he didn’t know how fast his aorta is growing since his last echo was 5 years ago.  He basically said to bring him back if he was complaining of chest pain.

We have so many questions and no answers.

I don’t know how concerned I should be, or if I need to restrict him from doing anything.  He is such an active kid, and it is impossible for him to stay still.

I don’t know what it means for his aorta to be enlarged like this at his age.  I have searched the web but I really can’t find a lot of information about children with BAV.  I am just trying to find out everything I can so I have a better understanding of how to help my son.  If there is any information you can give me I would greatly appreciate it."

Tears for Our Children, Our Loved Ones

I understand this Mother's tears. Those of us who volunteer with the Bicuspid Aortic Foundation have heard this too many times and have experienced it in our own families.

It is hard to take in adults, unbearable in a child, to go from "no big deal" to a bulging aorta with an unknown growth rate, to be told to watch for "chest pain"!

BAV May Be a Very "Big Deal" 

We all desperately want to believe that it truly will be "no big deal" in us. That we will go our whole lives without any issues. Yes, some people do.

No one can promise that to someone with BAV. 
Time reveals what BAV means in each person.
What we need to know is what happens in some people with BAV:
  • at some time in their lives, the BAV may leak, narrow, or both and need some kind of repair or replacement
  • BAVers are at greater risk for infection of the heart and BAV 
  • the aorta above the BAV may bulge (dilate) and over time become an aneurysm
We need to hear that we need lifelong follow up care, and that keeping copies of our records will help the doctors we see, who will care for us over many years. This way we give ourselves the best possible life, as knowledge and treatment get even better than today!

This Mom has excellent questions. The Foundation has tried to help her start learning about BAV. There are some physicians and centers that write about their experience with BAV children. We wish there were more who seek to better understand and care for children with BAV.

Here we share one such program for BAV children in Chicago that shares information with the public:   Children's Hospital of Chicago BAV Program .

Here is a page of medical information about children on the BAF website: BAV in Children .

And here are the stories of two little boys born with BAV: Emerson and Lincoln .

Our children
 deserve much more than
"it's no big deal",
much more than 
 being sent away for five years.

Together, we can share information
to help our children and 
their entire families.

Yes, together we are
Creating a Climate of Hope.

          - Arlys Velebir
                                     Bicuspid Aortic Foundation