Heartfelt Cardiac Projects: The Morrell Family’s Fight Against Hypertrophic Cardiomyopathy

In this special interview, we speak with Holly Morrell, founder and executive director of Heartfelt Cardiac Projects, a nonprofit organization that offers comprehensive cardiac screenings to prevent sudden cardiac death. The mission behind Heartfelt Cardiac Projects is a personal one: several members of the Morrell family have been lost due to hypertrophic cardiomyopathy (HCM). Tell us about your family’s history with hypertrophic cardiomyopathy. How and when were your family members diagnosed HCM? I started the cardiac screening back in 1999 as a tribute to my loved ones that I had lost. Then, after running my screening program for approximately three years, I also was diagnosed with HCM. So although I knew I was going to be a good spokesperson, I had no idea then that I was going to be that good of a spokesperson! My family’s history with hypertrophic cardiomyopathy began in 1956 with my father and his twin brother. When they were in high school, their 3-year-old sister Michelle passed away in her sleep. Shortly afterwards, in the early 1960s, their mother died of heart failure at the age of 54. At that particular time, my family wasn’t yet aware of what exactly was happening. My father’s twin brother had gone on to have five children of his own, and my father’s children included me and my older brother Eric. It wasn’t actually until 1975 when the first of my cousins, Kyle, who was one of the five children in my uncle’s family, died of sudden cardiac arrest. Kyle was only 12 years old. That is when my family, especially my father and his brother, who recalled their own tragedy of losing their baby sister and then mother, realized something was really wrong. They started investigating to find out exactly what was going on with our family’s health history. After Kyle’s death in 1975, we all underwent medical testing. Of course, back in those days they didn’t yet know of HCM, even though the condition had been occurring for quite some time. So although the acronym and the name of the condition have changed over time, it has eventually resulted into what we now know as HCM. A year later, the oldest boy of my cousins, Mitchell, passed away from sudden cardiac death at age 14. Within another short period of time, my oldest female cousin, Desiree, suffered full cardiac arrest at age 14, but miraculously she survived and has grown up and gone on to have a child of her own, her son Tyler, who also has the condition. Desiree, Tyler and I, who all have HCM, have all had ICDs implanted to protect ourselves from sudden death. I am actually the only member of my family who has not suffered full cardiac arrest with the condition. Desiree just had a left ventricular assist device (LVAD) placed, which is serving as a bridge to heart transplant. My uncle Gary, who is my father’s twin brother and the father of the five kids, unfortunately passed on from HCM in 1991. My father received a heart transplant in 1995 and lived nearly 10 years, but he passed away in 2005. So that brings the number up to six members that we’ve lost from the condition. In total, out of 11 potential family members, nine of us had HCM, and out of the nine, six have passed away and three of us are living with interventional methods. Tell us about your own diagnosis. I was always considered a borderline HCM case from the time I was very young. In 1997 I was asked to participate in a gene study, and at that particular time they weren’t even able to identify the gene, but I went ahead and submitted my blood. Five years later I got a call and found out that my blood came back positive, so I resubmitted and went through the testing again, and in 2002 I was conclusively diagnosed. What has been your experience having an ICD? My early experience was unfortunately not so great. It seems that my family members and I always seem to be the extreme cases. I had some pretty severe surgical complications after receiving my first ICD in 2002, and it was absolutely miserable. It had been very difficult for me to make the decision in the first place to have the ICD implanted, because at that particular point in time I was still considered a low-risk patient, so the device was going to be placed prophylactically. It was a bit of a struggle emotionally to make the decision. However, I felt it would be irresponsible for me as a Morrell not to have an ICD — my family had gone through enough and I didn’t want to create any unnecessary anxiety or fear for my loved ones. In addition, at that time I was already involved in my screening program, preaching early detection and intervention, so I needed to set a good example. Therefore, I went ahead and made the decision to get the ICD placed. Immediately after waking up from the surgery I was extremely uncomfortable and not feeling quite right, but I didn’t have a good point of reference — I had nothing to compare it to because I had never had another medical procedure done before. That evolved into nearly two years of complete and total misery and pain like I never want to experience again in my lifetime. I wasn’t really sure exactly what was going on immediately, but after seeing numerous doctors and having several procedures and then ultimately another surgery to move the device itself, I came to find out that the ICD wasn’t placed properly to begin with. It caused tremendous pain, I lost the use of my left arm, and at one point I told my EP doctor that although I had placed this device to protect my life, in all actuality it felt like I had ruined my life, and that sudden cardiac death was sounding really good to me! I couldn’t continue to live like that because the pain was unbelievable. However, in all fairness, after everything was corrected and I was able to go through physical therapy and rehab, I am extremely appreciative of the ICD. The technology of the ICD is absolutely amazing, and I am very grateful for all of those folks that it helps protect, including my cousins. I have been shocked by my device playing tennis, and despite everything that I went through in the beginning, I am still extremely appreciative of the technology and its therapy. Your family’s story is incredible. Do you know of any other families in which hypertrophic cardiomyopathy has affected so many of its members? Not off the top of my head — I don’t know that any one family or particular situation has been called to my attention. However, I don’t think that it’s necessarily tremendously uncommon for multiple family members to be affected; I just don’t know if it’s quite the number that we’re talking about. I have met some long QT families in which the number of family members affected has been pretty extreme, which is surprising since long QT is supposed to be even more rare of a condition. When and why did you decide to form Heartfelt Cardiac Projects?  I originally began cardiac screenings in 1999 with another organization. I was continuing to hear about young athletes dying on the playing field, and with the knowledge that I had from our family history and family experience, I believed that perhaps they could have been preventable tragedies. It was bewildering to me that nothing was being done and that there was no early detection or screening programs that were available or affordable. I decided to get involved as a tribute to my loved ones that I had lost and in an attempt to try to protect lives from sudden cardiac arrest through early detection, education, and increased public awareness. Tell us about the cardiac screening program offered by Heartfelt Cardiac Projects. How many screenings does the group perform annually on average? As mentioned, I began my screening efforts in 1999, and have screened over 15,000 people across the country. I founded Heartfelt Cardiac Projects in 2006 to preserve the integrity of my mission, and we screen about 3,000 people per year using echocardiograms and electrocardiograms. I certainly hope to increase that number and make screening available to as many people as possible. What percentage of your screenings result in potential heart abnormalities? For every screening we do, we refer anywhere from 2 to 10 percent of the people we see for further evaluation. Now that doesn’t necessarily mean that it is anything potentially life threatening by any means, but nonetheless it is information that these individuals and their families would probably not have had an opportunity to obtain, at least without creating a huge financial burden. Do you provide in any way support or guidance for others with HCM? Not officially. I can tell you that I am very involved and proactive in terms of communicating with both families who have lost a child and families who are going through the diagnostic process. When I first started, there weren’t many other organizations offering support, but now that I’ve been doing this for nearly 11 years, I am happy to say that there are other programs that are providing incredible support for folks affected by HCM as well as for SCA in general or for losing a loved one. In what ways has your life changed now since your diagnosis? First and foremost, I try to turn everything into a positive. So in one aspect, I feel fortunate because I know exactly what I’m dealing with and I have the opportunity to protect my own life from sudden cardiac death. I also feel, in a selfish way, very blessed because prior to my own diagnosis I had to speak of all the tragedies of my family’s story, and now even though there still is tragedy involved in my family’s story, I am able to represent hope and a positive situation because I get to say “I know it can be a frightening and scary thing to contemplate having heart disease or a heart condition or perhaps getting an ICD, but I am a happy, healthy and active individual and I’m living with heart disease, so I feel blessed.” In those situations, I feel really grateful. Furthermore, I obviously feel very thankful that I do not have to worry on a daily basis and feel very protected and safe because of the ICD’s life-saving therapy. What advice or information would you like to pass on to the electrophysiologists and/or EP lab staff reading this article? Don’t forget about the human wrapped around the device. I know there are a lot of brilliant electrophysiologists who are excited about the technology and the research and learning, but it is also just as important not to forget about the patients as human beings and to deal with us with compassion. Watching my father live through having a heart transplant, I thought it couldn’t get any more dramatic than that, but I found that at least there was a closure and conclusion to it: one recovers, heals, and is able to move on. However, ICD patients are a unique group of individuals in that we know that we are having a device placed into our body that is there purposely to inflict a physical trauma — a shock — to our body if needed. It is a very unique type of concern, anxiety and fear for some of us, although of course it is based on the individual situation. But I don’t think there are a lot of other procedures or devices or transplant situations that are similar in that way. The feelings that we contemplate are fairly unique, so again it is very important for EP doctors and others to be able to recognize that there is a human wrapped around the device. What advancements would you like to see made in HCM? Fortunately, at this particular time, as the medical industry and cardiologists study this condition, I know they are learning a tremendous amount about the disease. I’m hopeful that that remains moving forward and that more knowledge is gained, so there can be accuracy in diagnosis and treatment, the number of deaths occurring from the condition decreases, and that interventional methods are made available to more of the public who have the condition. I also have great hope that in this country we will be able to standardize a screening protocol so that Heartfelt Cardiac Projects and other grassroots programs in general might be able to work from a standardized protocol to assist with a more effective and accurate screening process and the data could be collecting into a comprehensive research program. I am aware that there is controversy surrounding screening in this country, but I do believe it is essential that early detection be made available, and that perhaps some of the controversy could be stifled if progress is made on standardizing the screening process, working from one standardized protocol, and preserving the data to feed into research programs that will teach us more and more about HCM and the additional risks of sudden cardiac arrest. Is there anything you’d like to add? The gift of purpose is often found through great adversity, and I am blessed to have found my purpose. For more information, please visit: https://www.heartfeltcardiacprojects.org/