Eddie Barnett, age 16, died playing basketball – Comments.

[Burton Borrok]

I’m sorry I am not a moderator so I was blocked from responding to the original post, but since I have something to say about this, I opened another thread here.

And the AICD was where? In the back of a locker in the school that’s a few miles away? And the operator of the equipment (if there is one) was maybe home watching a good TV program? And since when is CPR a substitute for an AICD?

It’s bad enough that we lose kids who have never been diagnosed with HCM – how can we still find doctors who will authorize competitive sports for HCM patients – and what kind of parents would allow there (now dead) child to play any competitive sport in the first place? Do you think they will ever realize that they contributed greatly to their own child’s death? (Well, it was only a mild case – and now he is only a little dead.)

It’s enough to make a grown man weep.
Burt

[kelly]

Burt,

I believe you mean an AED (Automatic External Defibrillator). An ICD is an internal cardiac defibrillator.

Just wanted to clarify this for everyone.

Kelly

[Linda]

My thoughts and prayers go out to Eddie's family and friends. I know they face a difficult path as they do their best to help one another through this tragedy. Linda

[vickie k]

Although Eddie Barnett may very well have died from HCM, I didn't understand from reading the article that it had definitely been decided that HCM WAS the cause. Could have been, but could have been another equally tragic cardiac diagnosis. I feel terribly sorry for the parents of that boy. I place no blame on them. They have suffered a terrible loss and they may come here for support. I hope they find some here. God bless Eddie Barnett and his family.
Vickie

[angall]

I can feel the pain Eddie's parents are going through. Losing a child is the hardest thing to cope with.

My prayers go out to Eddie, his family and his friends. I found out how friends are much a part of a person when the school district had to have 3 buses in order for all of my sons friends to attend his service and funeral.

[cheerchicken05]

i get so frustrated and so thankful every time i hear about this happening to someone my age.

i was 16 when i was diagnosed about a year ago and it has just frustrated me to no end that i am the one and only person in a school of 3000 who knows about HCM...and there isn't an AED at my school. i'm scared to death something like this will happen in my school and i could have stopped it. and i know i can work harder than i am to get something done about this. we're gettin there, we're getting there!!!

[Burton Borrok]

Yes of course Kelly – thank you. I do get a bit upset when I hear things like this.

While I’m at it, I meant nothing against the parents of this teen. They have a lifetime of regret ahead of them, and they sure don’t need another kick from me. I hope they do come to this site, and I hope they get the support we give to people who hurt.

Next, it’s true the article did not mention HCM one way or the other, but it sure sounds like that may have been the case. In any event if they had an AED on site, with someone who knew what to do with it – and did it – this life might have been saved. Remember, if a shock is NOT appropriate, the AED – will – not – fire.
Burt

[Scott Stanley]

I totally agree with everybody, and do not blame the parents. But what about parents that will not get tested or have their kids tested.

I have a problem in my family, they are totally in denial about the disease. After all the problems I have gone through and asking them to get checked they seem to think they are okay. I am not even allowed to bring the subject of testing up to my sister. She two children ages 12 and 14, who are active in sports on select teams(teams in which you have to try out for). I love my niece and nephew, and will feel VERY bad if something ever happens to them, but I have done everything that I legally can to get it into my parents and sisters heads to get TESTED.

Thank you for letting me vent over this subject.

[Reenie]

Scott, I understand your frustration. My husband's brother won't get tested either. He has 3 kids, two of which probably won't be tested, but they did test the oldest a few years ago when he was having shortness of breath in PE. The tests showed nothing at that point but I asked my nephew just a few weeks ago if he still had a problem and he said yes, he doesn't feel he has the lung capacity that others do. He's now 22 and his parents really don't have a lot of say in his health care any more. Besides his dad not wanting to know if there's a problem, I think their doctor gave them bad info. I know that the same doctor told another family member that since her daughter didn't show a problem she never would. The doctor said that you're born with HCM and either you have it or you don't. This child was screened at age 10. I did talk to her mom, my husband's sister, and explained how this is just not true. I've done all I can do.

Reenie

[mtlieb]

Scott,

I agree that the testing issue can be frustrating!

I have four brothers and sisters who for the most part have all told me to shutup already about this HCM 'thing' and to drop the subject. I certainly hope that none of them have it, but in actuality... what are the chances that out of five siblings, i'm the only one that got this from our dad? It does scare me because their children are very active in sports. Sometimes they look at me like i want them to have it... like i don't want to be the only person in the family with HCM or something and my motives are entirely selfish. Arrrgh!

Heck, i can't even get my own son to be tested, but since he was already 18 when i was diagnosed there is unfortunately nothing i can do but hope and pray that he is okay. His mother has also asked me to stop pushing the issue and assures me that he has none of the symptoms that i have had. Well we all know that means nothing but it's hard to convey that to someone who doesn't understand the disease.

Non-HCM'ers tend to think of it just like any other heart disease... if they take care of themselves and don't have any symptoms then they must not have it. If i told my sibs there's a 50/50 chance they were born with a brain tumor, you better believe they'd all be running off to have MRI's in a flash! But they don't look at HCM the same way. In the end, all we can do is provide the info and nothing more. I'll feel terrible if something happens to one of them, but i'll also know that i did everything i could to get them tested.

Jim

[shirleymahoney]

Everyone

I know exactly how you feel i have tried to get my brothers to get test and i have 2 that said no, one was but it sounded to me like they did know what they were talking about being they said his EKG looked like he had a mild heart attack and i said maybe you ought to see another doctor and he said he trusted his doctor, well i threw my hands in the air and said i give up

Shirley

[Burton Borrok]

Yeah, I guess many of us have the same frustrations. When I was diagnosed I told both my kids to get tested, and to have my grandchildren tested also. Since then, my daughter had my grandson tested (clear), and last I heard had an appointment to have my granddaughter tested, but it’s been over a year and I haven’t heard anything more about it. I also haven’t heard if my daughter was tested yet either.

My son (now 40) was not tested on his own, but wound up in the hospital with HCM symptoms. He is now on HCM medications (among other things for his other problems) so I am not too worried about him. I won’t get a definitive answer on his condition from his doctor since he is an adult, and frankly, I’m not sure if he was told exactly what he has himself. But as long as he is being treated properly, I’m not too upset about him.

I don’t know why people in general feel the best way to handle possible serious illness is to avoid it, but it seems to be a common practice. (Look at all the people who are afraid to be screened for cancer, and how many of us were in denial until it could be denied no longer?) I get very upset with doctors who should know better telling people it’s OK for their children to play competitive sports “Let them be kids” and then tells the same thing to another batch of people, after a few of the fist batch get buried. (Whatever happened to ‘First do no harm?’) I also get upset with parents (to a lesser degree) who risk their children’s lives either because of the bad advise or because they don’t want to face the truth. So, I cry out in the wilderness in the hope that someone, someplace might hear me.
Burt

[SharonBates]

Hello Everyone,
I too want to add my two cents on this subject.

First let me start by sending my deepest condolences to the parents, family and friends of Eddie Barrett. I truly have experience the devastating pain when I lost my son, Anthony, at age 20 to undiagnosed HCM. Although I do not know exactly what they are feeling, I know from my own experience this is the worst thing that any parent could face. A wise friend told me recently that when we loose a spouse we are called widows & widowers. When we loose our parents we are called orphans. But, there is no name for parents when we loose a child...we just become broken.

My prayers go out to Eddie Barrett, and his family as they start these next hours, days & weeks without their son. I ask God to show them comfort and peace as they walk this journey of grief and sadness. I hope that all of the people that knew Eddie find comfort in the great memories they have of their friend, brother, son, and grandson. He will be missed by everyone that loved him and never forgotten!

My two cents: Although my son, Anthony, was never diagnosed, he had received annual physicals to participate in sports / football since he was 8 years old. Whether our children are diagnosed or not we put our trust and faith in the doctors of our towns, cities and this country to protect our children from debilitating and/or deadly experiences on the playing field. There are some things that can not be prevented! Tidal waves & land slides to name a few of the most terrible things.

I believe that Sudden Cardiac Death on our playing fields can & will be prevented with a few of these things: better preparticipation sports physicals; heart screenings for all our young athletes & children at risk of developing HCM (or other heart disease); and the implementation of AED's (Automatic External Defibrillators) in every school, on every playing field, in every town, city and state across this country.

This can be done. It is our job as a group to stand up and protect our children. As educated parents, grandparents, aunts, uncles, voters and citizens we can and should raise the awareness, increase the education of HCM & SCD in our children. Please do your part by getting involved and speak up for all the young people.

We can move mountains - even with the faith of a mustard seed!

Best Regards,
Sharon Bates
www.AnthonyBates.org