On Christmas night, a vibrant 18-year-old, Ben Breedlove, died from complications of hypertrophic cardiomyopathy (HCM), an abnormal thickening of the heart’s walls. It's a hereditary condition that often manifests in childhood.
As the director of the Gregory M. Hirsch Hypertrophic Cardiomyopathy Center in Hackensack, N.J., I have seen hundreds of patients with HCM.
I never want anyone to walk away with the idea that an early death is inevitable for patients with HCM. Individuals who receive treatment can have a life expectancy the same as the rest of the population.
This treatment is not limited to medicine or pacemaker defibrillators, but also includes surgery; and, for some, surgery can be life-changing. The tough reality is that not all patients who receive treatment live a long life. A case in point is the story of Ben Breedlove.
I watched “This Is My Story,” a YouTube video produced by Ben, for the first time with my friend, Fred Hirsch.
Fred’s only child, Gregory, died of a hypertrophic cardiomyopathy at the age of 29 in 2001.
Ben was long-time sufferer of HCM, who passed away after his fourth heart attack (his first had occurred at the age of four). In the video, he tells his story through a series of flash cards held up to camera lens. It is a simple, and simply heartbreaking testimonial from a brave young man who knew that his chances for survival into adulthood were not great.
In the video, Ben also hints that during his episodes of cardiac arrest, he experienced something like near-death visions, perhaps offering him a glimpse into an afterlife.
His detailed his most recent brush with death when he collapsed in the hallway of his high school. In the few minutes between when he stopped breathing and paramedics successfully resuscitated him, Ben wrote that he had a vision of a being in a white room with his hero, rapper Kid Cudi.
"Right then my favorite song of his came on, 'Mr. Rager.' The part where it said 'When will the Fantasy end...When will the heaven begin?' And he said, "Go now,"' Ben wrote. "Right then, I woke up and the EMS were performing CPR. I didn't want to leave that place. I wish I never woke up."
It was heart-wrenching to watch, but also inspirational to see Ben's courage and sense of peace when it came to facing death.
When the video ended, I asked Hirsch to verbalize his feelings.
“My greatest consolation [when his son died] was to know that he was peaceful and did not suffer, and also knowing that he was going to a better place,” he said.
What a perfect summary of Ben’s video.
I have spoken with many parents of children who have had a cardiac arrest. During Ben’s video, my first thought was of two parents I have known for years, Linda and Tony Cole, whose son Anthony suffered cardiac arrest from HCM and survived – but not without life-changing effects.
In a FOX interview with these parents earlier this year, it became clear to me that Linda had lived for 20 years with the anguish of believing that her son had been in pain during his very prolonged cardiac arrest.
Anthony had more than a dozen electric shocks administered to his heart, along with a protracted cardiac resuscitation. Despite the numerous medical personnel and physicians who cared for Anthony during his very long and difficult recovery, no one ever addressed this painful topic with his parents.
During the interview, tears of relief filled his mother’s eyes with the newfound knowledge that once her 12-year-old son turned to his friend on the playground and told them he had no pulse, he also had no blood pressure, and therefore could not feel pain as we know it.
Anthony is alive today, but with handicaps and special needs, so we cannot ask him to discuss his near-death experience.
But through the testimonial gift of Ben Breedlove, we all have a glimpse into that mysterious place between life and death; and, like Dickens’ Scrooge, we are all perhaps a little the better for having received that message.
Dr. Robert J. Tozzi is the chief of pediatric cardiology and founder of the Pediatric Center for Heart Disease at Hackensack University Medical Center in Hackensack, New Jersey. He is also the director of the Gregory M. Hirsch Hypertrophic Cardiomyopathy Center and a Fox News contributor.