Awareness Needed: Anomalous Aortic Origin of a Coronary Artery

October 12, 2017

Thomas Kimball, MD

6 Comments

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About the author: Thomas Kimball, MD

Tom Kimball, MD, is a pediatric cardiologist and Medical Director of the Heart Institute at Cincinnati Children’s. He started the Coronary Artery Clinic, in which he is also the Director, because he has been witness to one too many teens collapsing from AAOCA. He loves talking to kids about athletics and physical activity and has ran 63 marathons in 44 states.

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Jules October 12, 2017 at 6:18 pm

Dr.Kimball~ Is there any kind of pre-screening available for this? Would an EKG/echo/ or “Stress Test” pick this up?

Thomas Kimball, MD October 13, 2017 at 4:34 am

Hi Jules,

An initial screening test would be an echocardiogram. However, this is expensive and generally not recommended in asymptomatic patients. If a patient has fainting with exertion or chest pain with exertion, an echo would be warranted.

Rajiv March 4, 2018 at 1:04 pm

Dr. Kimball – shared this amongst my friends and colleagues. Thanks for posting. Given the catastrophic nature both the American Heart Association and Insurance groups should figure out a way to optimize the cost of one time screening for all sports kids cutting out profits for a great cause

Thomas Kimball, MD March 6, 2018 at 10:41 am

Mr. Sengupta – Thank you for your post. I agree that the conditions can have catastrophic consequences. Over the last few years, I’ve witnessed groups, including our own Heart Institute at Cincinnati Children’s, perform screening clinics and programs at either reduced costs or even gratis. The problem is sustainability not only in terms of cost but also in terms of the number of people needed to conduct large scale screening programs. Added to this is the less than perfect sensitivity and specificity of screening tests resulting in the possibility of false positives or even worse false negatives. And finally, the decision to screen or not to screen is, ultimately, a societal issue – specifically what is society willing to pay for detecting the number of children that can be saved by screening. With breast cancer, for example, society has deemed it appropriate that the cost of a mammogram is worth the cost of saving a number of women from that awful disease. At this point, unfortunately, the same cannot be said for large scale athletic pre-screening in children and adolescents.

Belle March 22, 2019 at 7:07 pm

I suffered from shortness of breath for a very long time after my daughter was born in 2007 and was misdiagnosed with asthma in 2014. this was after seeing a cardiologist who stated my heart was okay following a stress test. After being on steroids for a year, the pulmonologist stated he could not treat me for asthma any longer as the treatment was not working and he felt I did not have asthma.
I moved on to another medical team in 2016 and a contrast CT scan was used to identify my anomalous RCA. By-pass surgery was recommended, no mention was made of an unroofing procedure. I had the by-pass done in 2016 and felt better for about a month before my symptoms returned.
My cardiologist only said oops and sorry.
I am about to have an unroofing procedure and reading these blogs have been enlightening and extremely helpful to me. I am now 50 years old and have no plaque or blockage in my arteries, I have a very healthy heart. I should not have had the bypass, my blood flow was fantastic.
Everyone should do more research on their condition and ask for alternative solutions. I was informed this was the best course of action and no alternate solution was offered. It would have saved me a lot of pain and suffering. Once diagnosed, my doctor asked that I do not read up on the condition as it is frightening and I must not be panicked by the information out there. But reading about the condition helps patients understand what options are available to them.
Because of my fear of going under the knife again so soon after the by-pass surgery, I was placed on drugs to slow my heart and open up my arteries. They helped me manage the symptoms but I could not exert myself and my fatigue is excruciating. My unstable angina was less frequent.

Thank you so much for this information.

I also wondered if anyone can have a normal action packed life after the unroofing procedure. It would be great to know.

Danielle June 6, 2022 at 2:59 pm

My daughter will have her 1 year anniversary from having open-heart surgery to repair her AAOCA, June 7th. For years, we thought she suffered from Asthma and had her undergo testing at National Jewish. Nothing was found of that testing and less than a year later, she suffered a concerning episode which was carefully diagnosed at AAOCA. Unfortunately, her high school basketball career came to a close with that diagnosis and she decided to miss Graduation and have surgery so that she would be recovered for her first year of college. Fortunately, she is well and back to working out and playing basketball recreationally however awareness needs to spread about this condition so that parents can get children properly diagnosed if they experience any of the symptoms and if they are athletes.