Teen Recovered after collapsing at basketball game!

[CStanford]

JACKSONVILLE, Fla. -- On Tuesday, thebasket ball game almost turned tragic for the 13-year-old Camden County student. After just six minutes on the court, he suddenly fell to the floor.

"When they rolled him over that's when they thought he had a seizure because the body started jerking," his aunt Marcia Nelson tells Action News.

The coaches tried CPR, but when rescue arrived Jonathan had no pulse, and within an hour he had was life-flighted to Wolfson's Childrens Hospital. After dozens of tests, doctors discovered a genetic heart disease stopped the blood flow to the brain, so they induced a coma to save him for the next 48 hours. On Friday morning, Jonathan's health took a miraculous turn.

"I just asked everyone please pray because the past 48 hours have been rough, and they did. The whole community was behind him."

He is now breathing, drinking, and even talking. Over the next few days, he will have a permanent defibrillator put into his heart, that will likely affect his sports playing abilities in the future. But in the most difficult game of his life, so far this athlete is winning.

[Cynaburst]

Re: Teen Recovered after collapsing at basketball game!

These are the stories we like to hear. Of course, it would have been better if Jonathan's heart condition had been detected prior to his collapse. That is what the HCMA is working for with its programs like the pre-participation/family history questionnaire. To find those at risk of a cardiac event BEFORE they have one.

[CStanford]

Re: Teen Recovered after collapsing at basketball game!

The EMS that team that responded were friends of my husbands so they knew a good bit of info about HCM. The thing that gets me about this story is the school had an AED but did not have it out at the game nor did they get it once he collasped they told our local paper that he was still slightly breathing so they didn't think it was needed. But it is great that he is recovering. Wish I had a way to get ahold of the family and provide them with some info.

[Reenie]

Re: Teen Recovered after collapsing at basketball game!

If you want to get in touch with the family to provide information you might be able to go through the Principal at the school. You can contact him/her to say you heard of the situation and that you're very glad he's much better. Then offer to pass information about HCM through him/her to the family. Then if the family wants to interact with you they have that option.

[juli714]

Re: Teen Recovered after collapsing at basketball game!

I disagree with Cyn -- If a child is found to have HCM and the parents do not know they have it, then why in the world would anyone write down they have something they do not have? However, I am in favor of having all children screened before they participate in rigorous sports and/or to be an included requirement for the school physical exam. My son is adopted and I had him screened as a precaution. However, I did not know I had HCM, my mother did not know she had it and we are both asymptomatic -- so why in the world would we have been tested to begin with if we never had symptoms? A family history/questionnaire would be proven useless in our cases because neither one of us had symptoms. Questionnaires do not tell a story, echocardiograms do.

[Cynaburst]

Re: Teen Recovered after collapsing at basketball game!

Juli - The HCMA has developed a questionaire for schools which is designed to flag those students who are at higher risk to have HCM or other conditions that cause SCD. This questionaire is based on a many questions in a family history. It does not require that there be a family member with a diagnosis of HCM. We are trying to help schools identify those students who are at highest risk of having an issue. Then, they would be referred for echocardiograms and a complete cardiac workup. Programs that would give an echocardiogram to everyone in the school would be cost prohibitive. This way, we find those who are at highest risk, and then they are referred to a cardiologist for further testing.

[juli714]

Re: Teen Recovered after collapsing at basketball game!

Juli - The HCMA has developed a questionaire for schools which is designed to flag those students who are at higher risk to have HCM or other conditions that cause SCD. This questionaire is based on a many questions in a family history. It does not require that there be a family member with a diagnosis of HCM. We are trying to help schools identify those students who are at highest risk of having an issue. Then, they would be referred for echocardiograms and a complete cardiac workup. Programs that would give an echocardiogram to everyone in the school would be cost prohibitive. This way, we find those who are at highest risk, and then they are referred to a cardiologist for further testing.

Questionnaires are based on an individual's knowledge and many people are not knowledgeable about cardiac issues -- the vast majority of people are not -- and as for echocardiograms being cost prohiibitive? That is not so. My son's echocadiogram was paid for in full by our medical insurance. Also, have you considered the children who are adopted? A questionnaire would not help them. We have to rely on birth parents telling the truth or being knowledgeable and the statistics and research prove otherwise. In any event, if you love your children, the cost is minimal. Case closed.

[gfox42]

Re: Teen Recovered after collapsing at basketball game!

Juli,
You're right that questionnaires about family history usually won't help with adopted children. For everyone else, they can help a lot. True, most people don't know much about hearts, but they do know something about the ages at which their parents or siblings died, and whether it was thought to be heart-related.

As for cost, I don't think the cost of an echo is what most people think of as minimal. Especially because an enormous number of people don't have insurance, and insurance may well not cover an echo if there are no symptoms or other reason to think the child is at risk.

Gordon

[juli714]

Re: Teen Recovered after collapsing at basketball game!

GFox -- You are incorrect. Everyone has insurance -- in fact we do not know of anyone who does not have it. Secondly, our son does not have any symptoms or diagnoses and for a simple co-pay at at COE he had an EKG, and echocardiogram and a separate stress test by a leading pedatric specialist in HCM at the COE. Thirdly, I did not list any heart issues and I have HCM and so does my mom. This is because going way back, no one conveyed stories properly and people do not know how things happened. Therefore, there is a multitude of misinformation regarding genetic history out there. Unfortunately, sad, but true. Finally, as a result, questionnaires are never good indicators and actual examinations are. Case closed.

[gfox42]

Re: Teen Recovered after collapsing at basketball game!

Juli,

You're welcome to disagree with me, but we work hard to make sure that discussions on this board stay civil. If you'd like to participate in discussions here, please refrain from taking a confrontational tone.

Gordon

[mbcube]

Re: Teen Recovered after collapsing at basketball game!

As an Adoptee and a HCM'r there are no sure fire way of knowing ones history. My B-mom had one genetic disease, B-father, another. I skipped her issues, but got his. B-mom didn't even know his middle name, let alone his medical info. Besides, when I found my B-family they didn't know he had it. I was DX the same age as he was when he died.

And BTW - They are many, many here on the board without medical insurance. I currently do not. Case closed.

[tom531966]

Re: Teen Recovered after collapsing at basketball game!

I wonder how much good the family history thing will do as well. And based on personal experience and from reading many similar stories on here I don't see any comments ever being made about the real issue as I see it. You can fill out all the form you want to fill out but if you don't have a doctor who knows what they are looking for then what good is going to do? 11 months before I was diagnosed I was at one of the top hospital systems in the country and started off getting told I had a heart attack and 3 days later being sent home saying I was fine. And how many of us are in a position like that and get asked countless questions about family history and the answer is "I don't know"

So my opinion is more time and effort should be spent educating these doctors on what to look for. So many missed it on me that no family history could have solved.

[mbcube]

Re: Teen Recovered after collapsing at basketball game!

Tom I agree, Doctors should be more informed. The HCMA SCA Risk Form is a tool/conduit to raise awareness of HCM and its symptoms / risks. It only takes one Yes on the form to trigger that this person should have further testing to see if they do have HCM or any other possible heart ailments. Its not just family history, but looking at their symptoms and putting 2 + 2 together. (How many of us missed or ignored the symptoms over the years?) At the very least it puts patient and doctor on the road to communicating and discovery. At its best, it saves a life.

[tom531966]

Re: Teen Recovered after collapsing at basketball game!

I dont think its a matter of missing the symproms. More a case of you have shortness of breath so it must be asthma. You have a heart murmur? Noooo worries it will never cause you any issues. I didnt ignore any symptoms and still took them 45 years to find it in me. And I wonder how many doctors I saw in that period who were WAY off base???? And I didnt have a mild case. I have seen the form. And in looking at the section under family history. And 5 years ago with having all the symptoms I didnt ignore and was trying to find out what it was. Every answer to each of those questions in that section would have been NO. Sooooooooooo go to the top of the section which are simililar to many questionnaires we all have filled out at many doctors offices over the years about half of those answers would have been yes. And they still miss it. So you can see the point or should be able to see the point that this from while has great intent isnt something we all werent asked before. Until the doctors start realizing what they are looking at then those who follow us are in trouble.

[gfox42]

Re: Teen Recovered after collapsing at basketball game!

Tom,
Of course -- it depends on both the information and the docs' ability to interpret it. But this is also true of the things we call tests: they require interpretation by a physician, and as such, even if the tests are conducted properly, there still is no guarantee that the correct diagnosis will result.

Gordon