What is the Price of a Child’s Life by Katie Asper

How do you know when your mission makes sense? When you can see the impact you’ve had on the lives of children. Katie Asper is one of those students. She attended a heart screening and discovered a heart condition. Then, she started giving back and raising awareness. Below is a paper that she submitted in school. We are so proud of her (her teacher was too as she got an A).

Epigraph: “Data from our heart screenings (and other similar organizations) show that one out of every 100 kids has a heart condition.”

What I already know:

On Saturday, September 15, 2012, I got a phone call from my mother, telling me to wake up my brother and get ready, and that she was going to be back at my house in fifteen minutes to pick us up. We were going to my school to have some sort of medical screening done. On a Saturday morning, this was just about the last place I wanted to be. Finally, after a long wait, I was through the whole process. I had my blood pressure and vital signs checked, and had an electrocardiogram done on me, although at the time that meant nothing to me. I was ready to leave, when a nurse walked over to us and told us that we needed to stay and have more testing done. I could feel my heart start to race as my nerves flew in. When you are at a heart screening, the last thing you want to hear is that you need more tests and that something is wrong. That was exactly what I was told. We went into the backroom, where I was given an echocardiogram and then I was diagnosed with Wolff-Parkinson White Syndrome. As it turned out, I had lived my whole life seemingly healthy, and I ended up finding out that I had an abnormal heart. It was an extra electrical pathway, and although it was just a minor issue, if it was not fixed it could have caused some major problems and complications of my health. I know that before they diagnosed me with this, I was asymptomatic, and there would have been no way for me to find out about this abnormality unless I got my heart screened. I was lucky to have found out about it, but I also know that there are many kids who are not as lucky as I was. Later that day, I learned a little bit about the family who planned the whole screening. They had a son, named Simon, and he died when he was only three months old. He, along with many other children, died of sudden cardiac arrest because of an unknown abnormality in their hearts. His parents are the reason why thousands of children, including me, have had the opportunity to have our hearts screened, and essentially why I am alive and healthy today. Since the screening I have been to multiple different doctors at the Children’s Hospital of Philadelphia, and in the summer of 2013, I had a cardiac ablation done on my heart. After being put through this whole experience and having gone through all of this stress, I started to think a lot about things like this. I also began paying more attention to things that I was hearing on the news. It became apparent to me that there were too many young people that were dying or being affected by unknown cardiac issues. I think that all of us have heard something about a young, healthy athlete dying on the field for no apparent reason. So why, after all of these tragedies, are heart screenings not mandatory?

What and why I want to know:

I remember the worry I went through when I was diagnosed and the relief I felt after finding out that this was not something that was going to immediately harm me. I remember the sadness there was after hearing Darren and Phyllis talk about their son Simon, but in the midst of all the mourning that they do for Simon, I am able to see the gratitude that they get out of helping all of the children that they screen. A number of kids, including me, are now a part of Simon’s club. Simon’s Club consists of the children who Simon’s fund has benefited. We are the ones who found out that we had an abnormal heart and have one way or another had it somewhat or completely fixed, or are having it monitored in some way, so we are able to go about living our regular teenage lives. When I help volunteer at the screenings, I am usually at the check in or check out desk, and I notice that there are a lot of people who signed up and did not get around to actually coming to the heart screening. I find it strange, because from my point of view, I almost didn’t make it to the screening, but because I did, my life was changed. What about the kids who do not get around to the screening? As far as I know, Simons Fund is the only non-profit organization that goes around and offers to screen hearts, because as many people know, the equipment for this is not cheap. My condition was not noticeable to me, or anyone else. I was a symptomatic, as are many other children who have heart conditions. Because I did not have any symptoms, there was nothing that would have prompted me to have my heart even looked at by a doctor, and nothing that made it seem necessary that I should go to a cardiologist to get a check-up. So basically, unless I looked and felt genuinely sick, which I didn’t, I would have had no reason to have these tests done on me. I think that this is the problem. The majority of teenagers seem healthy until something happens to them, and it is only after something like this happens that the problem is actually brought to light. But how many times do people have to hear about children dropping dead after physical activity for them to realize that this is a growing problem, and that it is going to continue to grow until people do something about it? Something like this is such a far-fetched thing to think about happening until it actually happens to you, and I’m sure that most people would rather find out at a screening as opposed to in a hospital after something tragic has happened.

Story of the search:

I found a multitude of different articles that were all getting the same point across. When I first started trying to find articles about this, I was having trouble, so I emailed Simons Fund and they provided me with multiple articles. In one article, the author explained what the guidelines are for you to be able to host a public health screenings.

“According to these criteria, a public health screening program is justifiable when: (1) the condition to be detected is of public health importance; (2) there is an effective test for detecting the condition at a sufficiently early stage to permit intervention (3) there are available effective treatments for the condition when it is detected at an early stage (4) there is evidence that early treatment before onset of symptoms, leads to better outcomes (5) the screening programm is feasible in a cost effective manner.” (Pros and Cons of Screening)

This was new information to me, because before I came across this article, I had no idea there were even guidelines that existed for this. Personally, I think the guidelines should be thrown out the window after hearing about all the people that have been affected, and have died, from this. There are multiple people that I have seen on the news who have been affected including an eight-year-old boy, a Dallas hockey player who collapsed on the bench and fell unconscious, who later required the use of a defibrillator, and a sixteen-year-old girl who passed after running a half marathon. Another boy, around the same age as the first boy, had a cardiac arrest and was lucky enough to survive. In an interview with his parents, they told ABC, “ ‘We didn’t know he had underlying heart condition, and most people don’t until something like this happens,’ said Knowles. ‘They almost always find this problem after someone has already arrested’”(ABC news). I think that Larry Husten wrote it best in a Forbes article, when he quoted James Willerson saying, “ the time has come for thorough heart screenings for all young athletes. […] If we save even one life, it will be worth it (Husten 2).   In a recent study that was conducted, the families of children that had experienced SCA filled out a survey that asked about warning symptoms and family history. The results showed that 72% of the victims had un-explained fatigue and lightheadedness. 24% of the victims had multiple events of syncope and unexplained seizures (National Library of Medicine).

The only valid reason that I have found for these screenings not being mandatory is the cost issue. I found that the American Heart Association does not recommend universal screenings, which I find very surprising. According to Fallen Health, An average doctor office EKG exam costs $43. There are 7.7 million high school student athletes in this country.  If each student athlete got an EKG exam, it would cost $331,100,000 (simonsheart.org). That obviously is a lot of money, but if you think about it from a different perspective, your opinion may change. Here are some comparisons:

“Combining all of the information above, it costs $47,695 to treat the heart attack and $6,840 for the hospital stay, for a total cost of $54,535.If we divide the cost of screening all of our student athletes ($331,100,000) by the average cost of treating an adult for a heart attack ($54,535), we get 6,071. To put another way, we could screen 8,000,000 students for the same cost of treating 6,071 students who were hospitalized from sudden cardiac arrest.”(simonsheart.org)

When you look at the cost of screenings in comparison to the hospital bills, hospital bills that could have been prevented by screening, the money issue doesn’t seem that bad.

What I learned:

Throughout this research, I learned that although there are many various reasons for why these tests are not given, the number one reason is because of the money. I also inferred that this will most likely not change in the future, and they will continue to only be given by non-profits.

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