On July 11, 2011, Jeremy left home to drive to a friend’s house, unfortunately he never made it there. With no other people in the truck with him, Jeremy drifted off the road for no apparent reason, according to witnesses.
The emergency room doctor reported, he could not keep Jeremy’s heart beating, that he could not understand why, with no serious injuries identified from the accident, Jeremy should not have died that day. The emergency room doctor encouraged the family to agree to an autopsy for answers. The family did eventually agree.
The autopsy revealed Jeremy had been living with a form of Hypertrophic Cardiomyopathy, it was reported later that with the severity of the heart wall growth, that nothing short of a heart transplant that would have saved Jeremy’s life, and even than survival would not be certain. The guilt of not being able to help their son will follow his parents for a lifetime.
Jeremy looked healthy, other than staying out late with friends, mild asthma and the bad habit that he recently picked up of smoking cigarettes Jeremy’s parents and friends just could not see why he was slowing down physically, not exercising as much, sleeping more. No one including Jeremy knew that he would soon die, at a little under 21 years old.
Many of the symptoms could be contributed to being normal for a teen or young adults life. In hind sight, yes , his parents can see the symptoms of the disease that took his life,
but never connected the dots.
His parents were concerned about a cough Jeremy had when he one of his jobs
was in a cold refrigerated warehouse, but thought it was his asthma being kicked
up by the cold. When he left that job, his cough got better for a long time.
About two months before Jeremy died, that cough was back, his asthma medicine
was not helping. He was sleeping a lot but just associated that with late hours
out with friends and the constant on the go. Jeremy did mention, one time about
having palpitations, but said it cleared up with a cough. Jeremy did not lead her to believe the palpations were occurring all the time. According to friends, apparently palpitations were happening for some time, no one reported the concern to his Mom or Dad. Jeremy just never let his mom and dad know the severity or duration of his symptoms.
Even his doctor said he had no idea of Jeremy’s symptoms or condition. Jeremy did go to see his doctor on his own a couple of times when he was around 19 or 20 years old; being the independent soul he was, he did not feel he needed to share is concerns with his parents, he must have thought he could take care of talking to he doctor on his own to get the help he needed. Had his parents known what was going on, they would have moved the sun and moon to get him help, to keep him alive.
Hypertrophy Cardiomyopathy (Video Illustration )is the killer of many young people on athletic fields. In New York State, laws requiring defibrillators in the schools were the first step to recognizing the issue, but early detection and diagnosis is better yet. Jeremy’s parents feel there has to be a way to diagnosis this disease in young people before death occurs. Perhaps a standard of testing young teen agers with a electrocardiogram and an cardiac ultrasound this condition may be identifiable before death occurs.
In the meantime, mandatory testing in the childhood or early teens would be
a start, as well as, education of heart issues the young people within the schools
would be an excellent start also. (Note: this disease is not associated to obesity
or lack of exercise in children)
We need to let our children and young adults know that they are not immune to adult issues like heart defects and disease. We need to teach them, they need to communicate their symptoms and concerns to parents, doctors or school nurses.
Note: Never would the family ever advocate pregnancy termination due to the
presence of this gene or family history of the disease, Jeremy’s life like other
young people, who suffer and die from this disease. It is so important to let
them live, regardless of the length of time they are here, as each person contributes
something very positive to this world.
Educational Awareness and Outreach References:
Children’s Cardiomyopathy Foundation http://www.childrenscardiomyopathy.org/site/hearts_act.php
Hypertrophic cardiomyopathy – Cardiomyopathy – hypertrophic (HCM); IHSS; Idiopathic
hypertrophic subaortic stenosis; Asymmetric septal hypertrophy; ASH; HOCM; Hypertrophic
obstructive cardiomyopathy U.S. National Library of Medicine – The World’s Largest
Medical Library http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001243/
Hypertrophic cardiomyopathy – Overview University of Maryland Medical Center
Pediatric Cardiomyopathies – American Heart Association http://www.heart.org/HEARTORG/Conditions/More/CardiovascularConditionsofChildhood/Pediatric-Cardiomyopathies_UCM_312219_Article.jsp
Asymmetric septal hypertrophy and hypertrophic cardiomyopathy. R Emanuel, J
Marcomichelakis, R Withers, and K O’Brien (Very Mediclly details report) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC481305/
Most Americans with HCM live normal life spans http://newsroom.heart.org/pr/aha/most-americans-with-hcm-live-normal-218445.aspx