Atrial Fibrillation: Treatable HCM Complication

A recent paper by doctors at Tufts University’s HCM Center found that transient episodes of atrial fibrillation (AF) are treatable and do not often progress to permanent AF.

This study found that AF was not a frequent cause of death by heart failure or sudden cardiac arrest.  However, the researchers identified AF as an important cause of stroke in HCM patients.  Therefore, they recommend a low threshold for starting HCM patients on anti-coagulants following an initial AF episode.

Researchers in this study analyzed statistics from 1558 HCM patients, 20% of whom experienced AF.  74% experienced only sporadic episodes, while 26% went on to develop permanent AF.

At the time of publication, 91% of the 277 of the patients included in the sample were still alive and between the ages 49 and 75 years old.



Guest Blogger – When a Seizure is not a Seizure – by Wendy Borsari

It’s strange to think that a chaotic arrhythmia in the heart might actually appear to be a seizure caused by something that has gone haywire in the brain, but with sudden cardiac arrest (SCA) this can sometimes happen.

This is the true story of what happened to my daughter.

On April 11, 2017, less than a week after her 14th birthday, my daughter suffered multiple cardiac arrests.  Two of these incidents were thought to be seizures by those who witnessed them.  And it wasn’t only her dance teacher who saw the first event who called it a seizure, but it was also the paramedic who arrived on the scene in time to see the second one.

After her muscles relaxed and she was still, the paramedic informed me that “it appeared as though” my daughter, “could have an undiagnosed seizure disorder.”  He relayed this information even after I had told him that she had Hypertrophic Cardiomyopathy and had had a previous sudden cardiac arrest that presented the same way.

As I listened to him, my mind was reeling.  My daughter had HCM, but could she also have epilepsy? What would this mean for the rest of her life?

Once hooked up to an EKG machine, it became apparent that the cause of my daughter’s events was cardiac; not neurological, but that didn’t make the situation any less horrifying for me or my husband.  While we’ve known for many years that our daughter was at risk of SCA, I had always imagined it would simply look like she fainted, without movement and breathing.

An ambulance rushed us to the local hospital where my daughter proceeded to have three more events, two of which caused her heart to stop completely!

The last time it happened, it took 2 full minutes of CPR to bring her back.

We were then told she needed to be med-flighted to Boston Children’s Hospital but they wouldn’t transport her until they took appropriate precautions in order to prevent another episode while in the air.

So, with a simple shot of local anesthetic to her neck, the on-call cardiac surgeon put a line into her jugular vein and down into her heart that would regulate her heart rhythm and keep her safe.

It was close to midnight by the time we arrived on the rooftop of Boston Children’s Hospital.  The pacer wire which had been placed in her heart worked, and she didn’t have any more events.  For the first time, I felt that she was safe and would be okay.

Two days later she had a dual chamber implantable defibrillator and pacemaker implanted.  We were all eager to go home and put the terrible events of the previous days behind us.

Though I’m still haunted by the events of that night, I’m so thankful that she was able to get the help she needed right away. But what happens to others whose cardiac events go unrecognized, or to the athlete who collapses on the field and looks like he or she is having a seizure?

I am sharing our story with the hope that it might bring awareness and possibly even save a life.

What Does Cardiac Arrest Look Like?

A person who is having a SCA will often become rigid with muscles seizing, as though suddenly made of stone. With SCA, breathing is non-existent.  You will sometimes hear a sound that is something like a cross between a loud snore and a gasp. This is called agonal breathing, which is actually not breathing at all. Agonal breathing is the brain’s attempt to override the body as it’s being starved for oxygen.  Agonal breathing is present roughly 40% of the time in a cardiac arrest, occurring during the short window of time that an AED shock would still be effective.

With a seizure, there will probably still be breathing, even though it may come in gasps.

It terrifies me to think that a bystander who witnesses a collapse might not reach for the nearest automatic external defibrillator (AED) if the event looked the same as my daughter’s.  Instead, they might call 911 and stand helplessly by, waiting for the paramedics and assuming that there was nothing to be done.

The events of that terrifying night in April will be with me for the rest of my life. I am forever changed by what I saw, and by the sounds I heard coming from my daughter.

However, if sharing my story with others might possibly save someone else’s son or daughter, it might help those awful sounds to fade from my dreams.


For more on how to distinguish a SCA from a seizure, see this link.  Please note that this page contains graphic videos which may be disturbing.

About Wendy

Wendy was diagnosed with Hypertrophic Cardiomyopathy at the age of 24. She comes from a family with a long history of HCM and sudden cardiac arrest. There have been 8 heart transplants within her immediate and extended family.

Wendy has 2 children, both of whom have been diagnosed with HCM. Wendy’s daughter was diagnosed at birth and her son at the age of 15.

Wendy now works with the Sarcomeric Human Cardiomyopathy Registry (SHaRe) and educates people about genetic cardiomyopathy through the website and through her “Affairs of the Heart” patient conferences held around the United States.

You can email Wendy at:

Apical Aneurysm is Risk Factor for HCM Patients

A recent retrospective study of patients at Minneapolis Heart Institute and Tufts Medical Center published in the Journal of the American College of Cardiology found that HCM patients who also had left ventricular apical aneurysms were at increased risk of sudden cardiac death and stroke.  However, with increased surveillance and appropriate treatment, including the implantation of a implantable defibrillator, radiofrequency ablation and/or anti-coagulation, as appropriate, the authors suggest that the increased risk can be neutralized.

A summary of this article can be found here.

Duchess Kate’s Sister, Pippa, Supports British HCM Charity

Pippa Middleton, who came to the public’s attention during the wedding of her sister Katherine to Prince William, has recently dedicated her efforts toward raising money for HCM genetic testing and research.  Middleton’s efforts are in honor of her late friend Miles Frost, who was lost to sudden cardiac arrest due to HCM in 2015. Frost’s father, British journalist and media personality David Frost, died from HCM just two years earlier in 2013, but this information was never communicated to the family.

The Miles Frost Fund, a partnership with the British Heart Foundation , helps families who have lost a member to a sudden death obtain genetic testing in order to learn if other family members are similarly affected. The Frost Fund also funds research by U.K.researchers working towards finding a cure for HCM.

Lindsay Davis: Using Her Big Heart to Help Others With HCM

This article, published in this week’s Women’s Health magazine, features the former ballerina and beauty queen turned vocal patient activist. These days, Lindsay has focused her efforts on saving lives from sudden cardiac arrest.  Lindsay’s efforts in the state of Ohio have resulted in proposed legislation to identify student athletes at risk of sudden cardiac arrest, while her partnership with the American Heart Association is steadily making CPR and AED training a graduation requirement in high schools across the nation.

Watch for more life-saving advocacy from Lindsay in the future.  She is clearly much more than another pretty face!

Updated to include a video of Lindsay discussing her implantation with a S-ICD device.

New Model for Predicting SCA?

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Doctors at the University of Pennsylvania have created a new model which they say can predict the risk of sudden cardiac arrest in people without known heart disease.   According to the article, published recently in Circulation, low levels of albumin, a protein commonly tested in routine blood panels, is a novel risk factor among the twelve factors identified.  This article in Cardiac Rhythm News offers more details.