Update: In December, 2012, we learned that Zak will listed for a heart transplant in February 2013. He will be listed after he returns from his wish provided by the Make-A-Wish foundation. His father, Clarence, will also be listed for a heart transplant in January, 2013.[/box] There is no secret among those that know me that I am passionate about educational technology and all that this powerful tool can do to support learning. But, if you’ve followed my blog for any time at all, you’ve probably noticed that I’ve posted here and there about a heart disease, Hypertrophic Cardiomyopathy (HCM). You may have fleetingly wondered why I’d include HCM among my posts on integrating technology and supporting teachers, administrators, and students in their academic endeavors.
It’s a legitimate question that I’ve received and one I’d like to explain.
On June 28th, 2008, my grandsons Quest (9 years old) and Zak (4 years old) were diagnosed with HCM. Their younger brother, Sutton (1 year old) was cleared of the disease for the time being. At the time, I was working as an Instructional Technology Trainer for Ysleta ISD in El Paso, Texas and was crazy about my grandsons, my job, my district, and my home town. The news, however, took my breath away…literally. The doctor (who clearly did not receive an A, B, C, or D in Bedside Manners 101) explained that Quest had a mild form of HCM but that Zak was severe. Very severe. I’ll just summarize by saying that he said the prognosis was poor. It took weeks before I could speak of it to anyone I knew about the news without losing all of my breath into a weeping mess. My heart will forever be thankful to a dear coworker and friend, Cathy, who realized what was going on and literally spoke for me whenever it was necessary to share the news.
I’m not sure it should have been that big a surprise. The boys’ father has HCM, their aunt Priscilla lost her life to HCM at the age of 33, their aunt Janice lost her battle at the age of 16, and their grandmother Shirley, succumbed to HCM at the age of 58. I knew all of them (except Janice who passed before I knew the family) very well. But, for some reason, the idea that HCM could be passed to the boys only swept through my mind on rare occasions. A general visit with their pediatrician prompted a suggestion to get the boys checked out “just in case” and that is what brought about the visit.
The boys’ parents immediately got the boys into the Texas Children’s Hospital Cardiomyopathy Clinic where a highly recommended and amazing doctor worked with HCM patients. They knew immediately that they needed to be closer to Houston where the boys could receive the most up-to-date and best medical care possible. They decided to move.
I could not imagine being away from those boys for even one minute at that point but I also knew that my daughter was going to need a lot of strength to get through this. She had a husband with HCM, two sons with HCM, and a one-year old. My thinking was that my husband and I should also go to Houston to so that we could provide as much support as possible. I think my role is to support my daughter so she can handle all of the boys’ needs.
Of course there was much to do in the process but the main thing is that we have now been in the Houston area for four years and we grow each and every day as we learn more about HCM and also about dealing with the disease in all aspects of the boys life.
I’m sad to say that the boys’ father is struggling daily with the disease and, as I write this, he is in the hospital with heart failure. He’s 34 years old. Zak, now 8 years old, is in the process of getting an ICD/Pacemaker as symptoms are beginning to develop due to the HCM. This will allow them to increase the medicine he is already taking. Quest is doing well and remains mild. He has problems with asthma symptoms and is also on medication for HCM. The boys have been through genetic testing and Sutton, now 5 years old, does not have the same gene as the other two boys. While this is a great sign, it does not clear him entirely from developing HCM. The boys currently must carry a portable defibrillator with them. There will be some comfort when Zak’s ICD/Pacemaker is implanted.
If you are still a little confused about this disease, you’ve probably already run across somebody or read of somebody with it. HCM is often the cause of Sudden Cardiac Arrest (SCA) and if you’ve read of an athlete who suddenly lost their life during a game, then chances are you are reading about an HCM patient.
The truth is that 1 in 500 people are affected by HCM in the USA. HCM is the leading cause of death in the young, including young athletes. People of all ages can be affected by HCM.
As an educator, I’ve also become aware of how little educators understand about this disease. Defibrillators are in schools but not nearly enough, they are often not placed well, and their use is not understood by school employees. Schools have fire drills, code blue drills, hurricane drills, and a host of other preventative plans but they don’t practice one for cardiac arrest. There is a drill available for this called the Dr. Heart Drill (video) and I believe every school should be implementing it.
Don’t get me wrong, I know how much the people in schools care about students. I think this lack of understanding is simply because folks don’t know enough about the reality of diseases like HCM and how common they really are among our student populations.
(Exception: I will take exception with the district where my daughter briefly enrolled Zak where they literally had a directive that the school ICD could not be used on him, that only his portable defibrillator could be used, and his portable defibrillator could only be used by his mother (who taught there) and the school nurse. All other school members were clearly directed that they could not use any ICD, the school’s ICD or Zak’s personal one, to help him should he suffer cardiac arrest. If you’re shaking your head in disbelief, believe me, we still are, too.)
So, I include information about HCM and the use of ICDs in school in my hope that others will learn about HCM, Sudden Cardiac Arrest, and take a proactive approach to making it different so that less people, especially our young students, are lost to this disease.
For more information, here’s a great site to learn more to protect students in your school and your own children:
Hypertrophic Cardiomyopathy Association