PDA

View Full Version : HEADLINE: PLAYING WITH DANGER: Athlete deaths (3 of 4 DOCS)



Tim Stewart
09-08-2003, 08:56 AM
3 of 4 DOCUMENTS

Copyright 2003 The Atlanta Journal-Constitution
The Atlanta Journal and Constitution

September 7, 2003 Sunday Home Edition

SECTION: Sports; Pg. 1D

LENGTH: 3462 words

SERIES: PLAYING WITH DANGER

HEADLINE: PLAYING WITH DANGER: Policies, finances put high school athletes at
risk: Suddenly lost;
Two very different Georgia athletes and their families became linked when a
similar fate struck both nearly simultaneously

BYLINE: MICHELLE HISKEY

SOURCE: AJC

BODY:

Wednesday, Feb. 19, 2003

Billie Jean Plankenhorn had just put a dish of pork roast and potatoes in the
oven around 5 p.m. when the phone rang. Son Derrick had fallen during track
practice at Southeast Bulloch High School, his brother said.

With three boys in sports, she wasn't overly worried. She'd been to the
emergency room many times, and she knew how Derrick tended to milk his injuries
for attention. She got in her 1996 Olds Ciera and pulled out onto the dirt road
in Stilson, a South Georgia community between Statesboro and Savannah that is so
small it has no post office.

At 7 the next morning, a phone rang in another kitchen 190 miles north.

Sandy Boslet had just fed her three younger children breakfast. At first she
thought the caller was joking about her oldest son, a football star at
Chattahoochee High School in north Fulton County.

"Ryan is down. He's unconscious. You've got to come to school," his best
friend told her.

In a minute she changed out of her pajamas and with husband Chris dashed off
in his company car out of the cul-de-sac of $300,000-plus homes into rush hour
traffic.

Fourteen hours separated the calls that first warned these families that
their seemingly healthy sons were in trouble.

Derrick Plankenhorn, a scrappy overachiever, never met Ryan Boslet, a gifted,
huggable giant. They came from very different worlds: Derrick, 18, lived in
rural peanut and cotton country, and Ryan, 17, in a well-to-do, congested
Atlanta suburb.

Their lives converged through death, when they collapsed while running at
routine practices. Both their hearts stopped so completely and suddenly that
neither put his hands out to break the fall.

Almost six months later, the sudden loss of these athletes from undetected
heart ailments continues to reverberate through two communities, and the state.
Both campuses were devastated by deaths witnessed by dozens of students, and
responded by creating memorials and rituals to celebrate Derrick's and Ryan's
lives.

And the families have reached out to one another, believing and hoping that
their boys were taken as a way of saving others.

Nov. 7, 1984

Savannah

Nine weeks premature, Derrick Plankenhorn was so sickly that on the 1-to-10
Apgar measurement of newborns, the doctor rated him a 2. He spent a week on
oxygen and a respirator, and his parents feared he wouldn't make it.

He left the hospital with a permanent dent in his chest, a condition known as
pectus excavatum. A congenital deformity found in one of every 400 births, it
typically causes no heart or lung problems but becomes more noticeable with age.

Derrick grew to deflect his physical flaws with humor. He joked that the
cavity would make a convenient cereal bowl for eating breakfast in bed.

He would always occupy the smallest percentile on the doctor's height-weight
chart. At home he always came up short against his brother Brian, two years
older, a star quarterback who needled him without mercy.

The two grew to the same height --- 6 feet 2 --- but at 160 pounds, Derrick
was 50 pounds lighter. Rawboned is the word some use in South Georgia. His red
hair reflected his feisty spirit, said his mom, Billie Jean, a kindergarten
paraprofessional.

"Derrick always had to work harder," his dad, Donald, a welder and fitter,
recalled. "He would not quit."

Derrick tried out for teams Brian starred on, and doggedly played defensive
end and long snapper for the Region 3-AA Southeast Bulloch Yellow Jackets.
Coaches tagged Derrick as the quintessential overachiever, who motivated lazy
players with twice his talent.

Chad Nighbert remembers his first day as the team's defensive coordinator.
"When he told me he was the starting defensive end, I was shocked. No way,"
Nighbert said. "His size didn't tell the whole story."

Part of Derrick's drive came from his Baptist faith. Even when the family
slept in, Derrick drove himself to church.

"I want to be known for all the things I help do on earth and the people I
help save," he wrote in a school autobiography project in elementary school. His
interim plans were less certain: "Ten years from now I hope to be still alive."

He believed that he was called by God to make the most of his modest athletic
gifts. His favorite verse was I Corinthians 9:24: "Run that you may obtain the
prize."

Some prize: While Brian got the nickname "Big Plank", Derrick was "Baby
Plank." As a way to break free of his brother, Derrick went out for track in
early 2002. His dad told him bluntly what almost everyone thought: "You are
wasting your time. You can't run with those black boys."

The team had room for someone at 400 meters. Derrick stepped up.

He won his first race, anchored the relays and ended the season fourth at the
state meet. His coach wasn't sure how to honor such an anomaly. So Derrick got a
new award: "Surprise of the Year."

"Track gave him the confidence," his dad said. "I could see a difference in
him. He wasn't in his brother's shadow. He was his own person."

Derrick had a new nickname: "White Lightning," inspiring a fellow student to
later pen these lines:

"At the end of the race, when it's all over and done, people would sit back
in awe and say, 'That white boy sure can run!' "

Oct. 23, 1985

Atlanta

Christopher Ryan Boslet was born in perfect health at Northside Hospital, the
nation's busiest maternity ward, weighing 8 pounds, 10 ounces. He never stayed
on the doctor's size charts. In his Little League team photos, he stands a head
taller than his teammates.

His feet would grow to size 15. "I couldn't find shoes that big. That was the
hardest thing," said his mom, Sandy, an interior designer and decorator.

The oldest of four children, Ryan possessed a firstborn's self-confidence and
the physique, talent and will to dominate whatever athletic pursuit he tried.
Besides the typical team sports, he completed the first of four week-long,
marathon Bicycle Rides Across Georgia when he was 11.

By seventh grade, he stood 6 feet and topped 200 pounds. "He was already as
big as some of the kids on the [Chattahoochee High School] varsity," said George
Moser, who coached Ryan's North Fulton Cougars to a 22-0 record. Ryan's size and
speed as a defensive tackle made him co-MVP.

Ryan enjoyed the obscurity of that position. His easygoing personality, his
niceness to school geeks and the birthday roses he brought to his girl pals ---
his behavior didn't match the hard charger others saw on the field. One teacher
wrote an apologetic note to Ryan's parents after she assumed his girth made him
a troublemaker. "He's the sweetest child," she said.

By age 17, he was 6-4 and 270 pounds, with a mop of brown curly hair. When he
wore a bright green shirt, his best friend John Hafferty dubbed him "Shrek."
Ryan loved to eat anything from sushi to burned french fries.

The fall of 2002, he started as a junior for Chattahoochee, a perennial
Region 6-AAAAA contender. Despite a foot injury, Ryan had 45 tackles and three
sacks, forced a fumble and recovered another.

After the playoffs, he geared up to get in tiptop shape. He signed up with
trainer Brad Pope, who works with Atlanta Braves catcher Javy Lopez. The fall of
2003, Ryan told his family, "is going to be my breakout season."

Feb. 19, 2003

Brooklet

Derrick Plankenhorn practically pawed at the Southeast Bulloch track, eager
to get going on his last track season. The school was replacing its old concrete
oval with a soft rubber surface, so shin splints no longer would be a problem.
Shaving a few seconds off his 400-meter time could well earn him a state title.

If that happened, he might even take off his shirt. Two months before, he had
undergone surgery to put two metal rods in his chest, pushing out the prominent
indentation. Although doctors and his parents considered the improvement mostly
cosmetic, it gave Derrick a psychological boost. What sprinter wouldn't want the
thought of more lung capacity, even if it wasn't so?

His surgeon, a specialist in pediatric thoracic surgery, cleared him to
compete and scheduled a follow-up appointment for August.

"We had every reason to believe he would be fine," said Southeast Bulloch
principal John A. Frazier. "We had no reason to believe he wasn't in good shape
to be doing what he was doing."

Fueled by peanut butter sandwiches his mom fixed to give him energy, Derrick
launched into what was a light workout and, as usual, finished before anyone
else. There was one cool-down lap left, and he hooked up with his friend Ricky
Williams and they rounded the track's second curve.

Sprint coach Mike Sparks first thought Derrick had stepped off the inside of
the track and sprained his ankle. When he didn't get up, Sparks thought maybe an
errant shotput had smacked him. When Ricky started screaming, Sparks dashed
over.

Derrick was trying to catch his breath. Sparks called his name and Derrick
didn't respond.

Sparks started CPR. Distance coach Jim Higgins assisted, and at 5:03 p.m. a
manager called 911.

A volunteer fireman heard the call on his scanner and arrived with a
breathing bag. In eight minutes, an ambulance arrived and paramedics shocked
Derrick's heart with defibrillator paddles.

No response.

Derrick's little brother Dustin, an eighth-grader who ran the 400 for the
adjacent middle school, watched the scene unfold. "In minutes he was purple,"
Dustin recalled. "It was bad."

On her way over, Billie Jean Plankenhorn heard that Derrick's condition was
worse than she first thought, and she sped to East Georgia Regional Medical
Center, eight miles past the school. About 150 other kids practicing sports at
the school saw Derrick's collapse, and now dozens filled the emergency room.

His mom peppered the coaches: "How bad is it?" None would look her in the
eye, and some were crying.

The only response: "They're working on him."

When hospital staff learned she was Derrick's mother, they ushered her into a
private room, tipping her off that something was very wrong. "I'd been in the ER
for broken bones and stitches, and they don't do you like that," she recalled.

An anguished Don Plankenhorn watched the staff treat his son. "Get up!" he
told Derrick. "Get up!" And to the doctors: "Don't quit working on him!"

At 6:27 p.m., they stopped. Derrick was gone.

Feb. 20, 2003

Alpharetta

Ryan Boslet rose before daybreak for a 7 a.m. "voluntary" conditioning
program before school that everyone on his team showed up for. Often cranky that
early, he was excited this morning. He had just received his first recruiting
letter, from the University of Memphis, the day before. He chatted all about it
to his friend, noseguard John Hafferty, as they drove to school.

The first part of the morning program consisted of four drills. The last one
was the suicide drill, where four players raced across the basketball court,
touching different points and turning to run the other way.

At about 7:30 a.m., Sean Hafferty, John's brother, was racing against Ryan
and trailing badly. "He was killing us," Sean said.

Ryan touched the baseline, turned and toppled over. Head coach Bill Waters
stood at the top of the key, shocked that Ryan failed to brace himself. While
players thought Ryan might have tripped, Waters suspected something much worse.
Maybe a seizure, he thought as he started CPR and told the players to go into
the locker room.

Soon Ryan's parents arrived, watching the coaches press on his chest and
breathe into his mouth. They saw school staff rush out with a new portable
defibrillator that no one knew how to use; they had been trained minimally on a
different model.

Sandy Boslet saw her son's gray coloring. "I took one look at him and knew he
was dead," she said. "I knew deep down in my heart he was gone."

She envisioned his spirit rising from his body, and felt if she talked, it
might return. "C'mon baby," she said. "Come on back down."

To Ryan's parents, the ambulance seemed to take forever to get to the school,
and to crawl through Thursday morning suburban traffic to the hospital. "Hurry
up and go!" Chris Boslet screamed at the other cars.

According to the Fulton County medical examiner's investigation, almost an
hour elapsed from the time Ryan collapsed and when he arrived at North Fulton
Regional Hospital.

The emergency room staff put a breathing tube into Ryan and continued CPR.

His parents sat at his feet for an hour. "He's 17 and healthy and we gave him
all we can," a doctor told them after the efforts failed. He was pronounced dead
at 9:24 a.m.

The reaction: Outpouring of emotion

The nearly 3,000 students at Chattahoochee heard the news of Ryan Boslet's
death in a special morning announcement. Car accidents and illness often claim a
life or two each year. This hit closer to home.

"You experience loss, but not where someone collapsed at school," said
Chattahoochee principal Robert E. Burke. "There's a remembrance of the event and
where it occurred. And it just is more personal."

The day Ryan died, grief counselors and local clergy tended to Derrick
Plankenhorn's 750 classmates at Southeast Bulloch, where principal John Frazier
noted, "We've dealt with death and dying, but this is the first time a student
has dropped dead on campus."

Psychologists encouraged students to talk through their feelings by writing
letters or poems, drawing pictures or posters. That sentiment was delivered by
the armful to the boys' homes.

A new shockwave unfolded for the Plankenhorns and Boslets. In their sons'
deaths, they discovered how many people these boys had touched.

The Plankenhorns stood in line five hours to greet everyone at the
visitation. At Trinity Baptist Church, the crowd of more than 1,000 overflowed
from the sanctuary and closed-circuit TV room to outdoors. People talked about
how Derrick had prayed with them and motivated them. His attitude: If I can do
it, you can do it.

"Even as his mother, I did not realize the depth of his life," Billie Jean
Plankenhorn said, weeping. "I just didn't realize because he wasn't flamboyant.
He didn't say anything. I don't think he realized how many people he had
touched."

The following day, another 1,000 people attended Ryan's funeral at Johns
Creek Baptist Church. The following week, as many as 20 kids spent the night in
the Boslets' basement, some walking off with T-shirts and souvenirs. Finally the
parents duct-taped a sign to the wall asking that nothing be removed.

News reports linked the two deaths, and the Boslets and Plankenhorns wondered
how the other was doing.

After several weeks, Chris Boslet contacted the Plankenhorns, and they talked
for an hour. They exchanged cards, news clippings and photos of their sons.

"I read where Derrick was always smiling and cheerful," Boslet said. "They
could have been writing about Ryan."

"You hear about people who lose children and you stop and say, 'That must be
terrible.' But until it happens to you, you don't know how you'd feel," Billie
Jean Plankenhorn said. "For it to happen like it did with Derrick, and to know
another boy died the next morning, now I know what it's like when someone loses
a child. I know."

The aftermath: 'Can't blame' anyone

Autopsy results came back from the state crime lab. Toxicology reports found
no foreign substances, relieving the parents of rumors that Derrick and Ryan may
have been taking supplements. Their deaths occurred the same week as that of
Baltimore Orioles pitcher Steve Bechler, who died from taking ephedra.

Derrick died of natural causes --- "acute cardiac dysrhythmia complicating
cardiac enlargement," meaning that an electric disturbance to his heartbeat,
along with enlarged arteries, caused his heart to stop.

The condition would not have been detected during Derrick's chest surgery,
Bulloch County coroner Jake Futch said, because the enlarged arteries "were
inside the chamber of the heart. It's like when you pick a peanut out of the
field. You see the shell, not the peanut. You don't know it's in there until you
open it up."

The Plankenhorns blame no one. Like the Boslets, they never considered suing
anyone. They believe God allowed Derrick to witness to others on earth for 18
years, then called him to heaven.

"You can't blame nobody for something like that," Don Plankenhorn said. "You
can't blame God. God knows what's right."

Ryan's diagnosis, according to the Fulton County medical examiner's report
issued in May, was "cardiomegaly with biventricular hypertrophy." The walls of
his heart's two lower chambers had thickened, making his heart work harder to
pump blood --- until it finally gave out. Also known as hypertrophic
cardiomyopathy, the condition affects 1 in 200,000 people.

"Ryan was doing the worst thing you can do," his mother said. "Under that
stress, his heart muscle can't pump, went off rhythm and stopped. There's
nothing worse he could have been doing than lifting weights and running."

The Boslets learned that this can be hereditary but not detectable until the
late teens. They support a program to provide heart ultrasound tests, called
echocardiograms, to local athletes and students to help prevent another death
like Ryan's.

"If I only had that chance to know," Sandy Boslet said. "If my kid could have
been tested, he might be alive today. Gosh, if nothing else, this is a benefit
that could save someone else's life."

The future: Families must go on

Knowledge of what killed their sons eased some pain for the families. Still,
they are constantly reminded of their loss. Both families are still very
connected to the schools because younger sons play sports there.

On Mother's Day weekend, the Southeast Bulloch girls track team won the state
title, dedicating it to Derrick. Later that month, the senior class dedicated a
school record board on the infield across from where Derrick died.

"We've had closure," said coach Mike Sparks, who had administered CPR to
Derrick. "But you always remember."

At graduation, a single rose spanned the chair Derrick would have sat in.

On May 19, at halftime of Chattahoochee's spring football game, the Cougars
dedicated a boulder with a plaque on it --- a gift from the Boslets --- to Ryan
's memory. Their plan is to touch the rock before each home game. The expanded
weight room was unofficially christened "Bos Works," and Chattahoochee will keep
Ryan on the roster this season. "He's still with us in spirit," coach Bill
Waters said.

At their homes, these families have fashioned shrines to their sons' lives,
of souvenirs of profound meaning and poignancy.

The Plankenhorns' front door doesn't open because of so many items: the
never-worn, size 11 Adidas track shoes; a signed football his team placed in his
shiny blue coffin; his class ring with "WWJD" on the side; a PowerPoint
presentation a coach made of photos of Derrick set to music.

Outside, the home is landscaped with the plants sent from sympathetic
friends: gardenias, hydrangeas, azaleas, a magnolia, yellow roses. Billie Jean
Plankenhorn, 44, never leaves these five acres without Derrick's picture and
organ donation pin nestled over her heart. He left behind bone marrow, eyes and
skin that helped at least 26 people.

Don Plankenhorn, 48, digs out a glistening Browning .270 short mag rifle he
stowed under the bed, intended as a graduation gift for Derrick, an avid hunter.
Cradling the gun, he says softly, "I do wish I had given this to him. . . ."

In Alpharetta, Ryan's ashes rest in a cherrywood urn above the fireplace.
Huge scrapbooks hold cards and mementos, down to the $636.26 receipt when the
family closed Ryan's bank account. A note from the Georgia Eye Bank thanks them
for his donation. A before-and-after drawing by his little sister Brittany shows
six stick people smiling, then five people sad.

His hefty class ring hangs from a chain around his mom's neck, and she never
takes it off. "I don't like pretending he's not here," she said. "Just because
he's not here doesn't mean he doesn't live on."

He does in the computerized world of college football recruiters. The stack
of form letters is six inches high and grows by the day.

"It is extremely important that you ready yourself for a great senior year,"
an assistant coach wrote June 25. "The more you run and weight train this
summer, the better prepared you will be."

Chris Boslet, 46, and Sandy, 42, don't know how to tell the teams their son
has died. Or how to answer the innocuous question, "How many kids do you have?"

"How do you explain that one is 17 and will always be 17?" Sandy Boslet said.
"Every day there is something. It's extremely sad. To get through life, I hope
to see him again one day. That's all you can live on."

GRAPHIC: Photo: The Boslet family of (from left) father and mother Chris and
Sandy, and children Brittany, Cory and Chase pose with a plaque at Chattahoochee
High dedicated to the memory of Ryan Boslet./ JOEY IVANSCO / Staff; Photo: A
Wheaties box with Ryan Boslet's photo is part of the mementos the family has
left in place in his bedroom. / JOEY IVANSCO / Staff; Photo: Sandy Boslet never
removes from her neck a chain that holds son Ryan's class ring. / JOEY IVANSCO /
Staff; Photo: Illustration of cross with a fence in the background. / JOEY
IVANSCO / Staff; Photo: Derrick Plankenhorn was an avid hunter, and this
Browning .270 short mag rifle was to be his graduation gift. "I do wish I had
given this to him," Derrick's father, Don Plankenhorn, says. / JOEY IVANSCO /
Staff; Photo: A collection of mementos from Derrick Plankenhorn's life occupies
a prominent place in the family's home in Stilson. / JOEY IVANSCO / Staff;
Photo: Donald and Billie Jean Plankenhorn (left), with son Brian, attend a
ribbon cutting at South Georgia's Southeast Bulloch High of a board listing
state track records dedicated to son Derrick. / JOEY IVANSCO / Staff
ME: Part 1 of a 3-part series about the dangers that high school athletes risk.

LOAD-DATE: September 8, 2003

Lee
09-09-2003, 03:34 PM
thanks

Bert
09-09-2003, 05:27 PM
I often wonder the real purpose for posting these stories. Why the need to be a peddler of fear, and exaggerate the prevelance of a particular disease?

To put this in perspective, and not burden the general public with overblown fears and anxiety, the overall risk of sudden death is extremely remote. Over a 12-year period in Minnesota, only 3 cardiac deaths were reported in their student athletes for an rate of 1 per 200,000 student athletes per year (Maron, Gohman & Aeppli, 1998).

To put this death rate in context, during 1996-97, 19,000 adolescents from age 10 through 19 died in all of the U.S. Fourteen-thousand of these deaths were injury related. Only 41% of the 10-year-olds died an injury-related death but 81% of the 18-year-olds' deaths were injury related. Overall, the death rate for ages 15 to 19 from all causes was 78.6% per 100,000 for males and 24 per 100,000 for females in 1998.

Clearly, sport-related sudden cardiac death is a VERY small part of this problem. Therefore, participation in sports is a positive experience for many adolescents, and should be encouraged as the known health benefits are significant.

So... Why the need to compound our worries beyond all reason? The concerns about the dangers of sports and HCM are real, but don't you think that when blown out of proportion they can do more harm? Disproportionate coverage of SCD in these postings comes accross as a way to tap into our insecurities and the fears that we must buy into.

I, for one, am not buying...

Bert

Linda
09-09-2003, 07:48 PM
Bert, Thanks for the statistics, it does help to keep things in perspective. To me, the loss of one person is too much, esp for those closely involved. Tim has a means of researching and making available to the message board, articles of interest - most involving HCM. He submits many articles, most are never posted. Sometimes the HCM even stands for something entirely different. This series seems to have been just that, a series of 4 articles, so to print only a portion of them may have left out something important to someone. Tim has been able to bring much new info on topics to the membership with his searches and postings and that's why he does it. He devotes a lot of time and energy to the message board technically, also. I was fortunate enough to be able to spend time with Tim and Lynn at the membership mtg in NJ and was delighted to get to know them. They focus on the positives in their lives and are most willing to help anyone else through difficult times in any way they can. Now Tim, if I've given incorrect info, please correct me. Bert, I also have days when these articles would be too much to handle. I'm real careful about what I read and when I read it, it can make you dwell on horrible thoughts. I guess the "take home" point of the series for me was awareness of the possibility. I hope the families are getting the help and support they need to cope with these tragedies. As they share their stories, we can all share in knowing that the lives of their loved ones were not lived in vain, and they will not be forgotten. Maybe we, as the HCMA are also providing some much appreciated comfort to the families. I hope so. Linda

Reenie
09-09-2003, 11:41 PM
I often wonder the real purpose for posting these stories. Why the need to be a peddler of fear, and exaggerate the prevelance of a particular disease?

Clearly, sport-related sudden cardiac death is a VERY small part of this problem. Therefore, participation in sports is a positive experience for many adolescents, and should be encouraged as the known health benefits are significant.



Bert,

You're absolutely right, sport related cardiac deaths are rather rare. HOWEVER, if you know there is a cardiac problem, you must VERY carefully weigh the benefits of regular cardio exercise and the risks of arrhythmias and adverse blood pressure responses.

I know you have strong feelings on the matter and so do others. I just want to say that your post seemed like a swat at Tim's posts on news reports of cardiac deaths. I want to remind you and others that we must tread carefully when we express our opinions. We're all free to do so as long as we don't start being harsh to others on the board.

Reenie

Bert
09-10-2003, 12:51 AM
Reenie,

Be as it may, I still feel that it is also our responsibility not to knock the optimism out of one another, by stuffing the website with negative articles. To routinely let emotional accounts trump objective information can create unnecessary anxiety, especially when the existing data does not substantiate sports-related deaths as a public health concern. I often wonder why some people embrace improbable events? I think I know where the answer lies...

As a final note, I am respectful of Tim's opinion as it is expressed with the posting of these articles. I may not agree with it, but nevertheless, contrary to popular belief, I do respect it. In this case, I was just stating my opinion about someone's action, not the person.

Over and out,

Toogoofy317
09-11-2003, 12:24 AM
When I read these articles I really don't take a negative effect to them. It makes me remember just how lucky I was! I did many of the same things as these young people did and was told that I was very lucky I am still here. I now have an ICD to protect me.

I mourn the losses of all who have died from this disease. I believe that every person who has been lost to HCM should be posted as a reminder that enough is not being done to keep people from SCD. If we forget those that were lost than their death was in vain.

You talk about statistics, they don't matter when you are the one trying to save that person's life. It keeps running through your mind if only there would have been an AED around or if my unit could have gotten there sooner this kid might still be alive. One life lost in my book is statistic enough to have kids checked.


Just my two cents on the matter.

Mary S.

Glen Beamish
09-11-2003, 09:46 AM
As sad as the outcome was, these were incredibly well written moving articles.
Personally I feel there is a need to know even if this type of death is a small percent death re HCM.
If you know what the content of the article is and feel it does you no good, don't click on it.
Bert, that was not a comment aimed just at you, it was meant as a general comment for anyone that is not comfortable reading those type of articles, but I believe we should have the option to do so.
Tim, Thank You.

Bert
09-11-2003, 10:24 AM
First of all, let me make this clear. The death of any young person should never be in vain, regardless of the cause. My point here is, that in this country, we are burdened by people and organizations that manipulate our perceptions and at times profit from our anxiety.

While screening kids has the potential to save lives through early diagnosis, it's unfortunately not a fool-proof process. Screening can reduce the risk of developing complications but it cannot offer a guarantee of protection. In addition, in any screening, there is an irreducible minimum of false positives results and false negative results. If there is a likelyhood of too many false positives, it would be irresponsible to introduce a screening as too many people would be subjected to medical procedures they did not need. It remains unproven that refraining from strenous exercise decreases risk, it may precipitate death rather than cause it. Most of the these kids would be destined to live a normal life-span, remaining asymptomatic much later in life. Case in point, Italy has a national screening program for all athletes who must become "certified" to participate at a certain level, and yet they have a higher rate of SCD among athletes than in the U.S.

I know were not much on statistics, although ironically most of medical practices are predicated on empirical data. Nevertheless, of the 40,000 annual deaths of 10-24 year-olds, 37% are car accidents, and yet we don't think twice about putting our kids behind the wheel as quickly as we can. With a kid who is just starting to take "Driver's Ed", believe me I'm more concerned about those odds than anything else at this point.

The death of young people, sick or healthy, is a tragic event which ever way we look at it. I've spent enough time in children's hospitals during my athletic career doing fundraisers and charity work, only to discover that more doctors, more hospitals, and more tests doesn't corrolate with a healthier population. Incidently, the suicide rate for 15-19 year-olds has gone up 35% in the last decade. My question is, what are they afraid of living for? Does the culture of fear in our society have anything to do with it? Perhaps...

Just a thought, that's all.

Bert

Bill
09-11-2003, 11:26 AM
Why, why, why are the newspapers and TV news shows cluttered with stories about U.S. troops who die in Iraq? Why must we be peddlers of fear, and exaggerate the prevelance of danger in a war zone?

There are 140,000 U.S. troops in Iraq and there have only been 138 U.S. deaths there. That's just .00098%! Clearly, combat-related sudden death is a VERY small problem. Therefore, participation in combat is a positive experience for many adolescents, and should be encouraged as the known benefits of military service are significant.

And another thing: Why, why, why must we constantly read those dreary stories about people dying on the highways? Why the need to compound our worries beyond all reason?

There are 191,000,000 licensed drivers in the U.S. , and last year there were only 42,196 deaths on American highways. Why, that's only .00022%! Clearly, death on the highway is a VERY small problem -- even less of a problem than death in a combat area, which we've already illustrated is an EXTREMELY safe place to be.

Don't you think that when blown out of proportion these stories can do more harm? Disproportionate coverage of combat and highway deaths comes accross as a way to tap into our insecurities and fears.

I, for one, refuse to bow to these media fear merchants. Let's demand some GOOD combat and auto accident stories for a change!

Bill

Bert
09-11-2003, 03:05 PM
Dear Bill,

Inevitably the unexpected collapse of young people during organized sports activities strikes to the core of our personal sensibilities. However, the infrequent occurence of deaths on the athletic field suggets that the intense and persistent public interest in these rare but particularly devastating events may be disproportionate to their overall significance in the general population. Indeed, these deaths occur much less commonly in the first 3 decades of life than other public problems, such as accidents, homicides, and even the consequences of illicit drug use.

The fact remains that 7.47/1,000,000 high school and college male athletes die every year, that's 0.0000074% if you rather see it that way, and 1.33/1,000,000 high school and college female athletes die every year for a percentage of 0.0000013%.

As some of us have pointed out 1 death is too many, and I'm not denying that, but it is still considered a fraction of those who die in cars at the high school level. Arguably, the news media can be accused of disproportionate coverage on a lot of other ills that afflict us, but in this instance I don't believe it's the case. Let's face it they're all real, but some deserve more attention than others wether we like it or not.

Just my opinion.

Reenie
09-11-2003, 03:41 PM
One point I think we all need to remember is that almost everybody knows that teens die in car accidents. Most parents will do their best to assure that their kids are safe. They drill on seat belt usage, speed control, awareness of surroundings, etc. The problem with many cardiac deaths of young people, and particularly young athletes, is that they are not aware that there may potentially be a problem with their hearts. In my opinion, if they knew they were predisposed to having heart trouble, of any sort, they would be more careful and not be running wind sprints before a basketball game. They would give the basketball up if they thought it would kill them. Sometimes that's the only way to protect our children from getting hurt.

My personal experience is that although my kids have not yet tested positive for HCM I won't allow them to participate in competitive sports like soccer until I see that their echos are still as clear as they were last year. That's part of the way I do my best to be the best parent I can be.

Bert
09-11-2003, 03:57 PM
Reenie,

The fact that you yourself make that decision based on the evidence that you have, is exactly what it should be. As long as it isn't a group or an organization that decides for you for fear of litigation, is what I oblige.

Thanks,

Bert

Lisa Salberg
09-11-2003, 07:15 PM
I have read this posting from top to bottom... I have laughed and cried... I have been touched and confused....
So here is my 2 cents...

Tim - I thank you for all you do and I know many others do to. You have access to these wonderful newsclippings that allow us to see what is being printed around the world about HCM. We are all here because we share the bond of HCM and EVERY article is important. Tim, it appears to me that your motives for posting have been questioned. I for one am happy to read about everything you post, even if that is the death of a child. Happy - why would I be happy...not because a child has died God NO! Happy because that child can teach others - Happy because a family has turned a hellish experience into education. Yes, I cry when I read these stories... but that is OK the tears give me strength to keep going in the battle to educate and support those with HCM.

Bert - Your comments are a bit harsh for those of us who have lived through the death of a loved one from HCM - or in my case 4 loved ones. I pray you never know the pain, and pray that you will see the world is more than your point of view. Stats are fine - and they teach us... they teach us what defines risk of SD in HCM - the HCMA shares information about those risks. What you choose to do with that information is up to you, we do not, have not and will not tell anyone how to live there lives...we provide information to make a choice with.

Bill - thanks for the laugh - I needed that.

To the families of those lost - thank you for sharing your children with us in this story - we know they were loved and we hold their memories in our hearts.

To the rest of the posters and readers - Let us all remember that the goal is to live life - and keep the memory of those lost with us as we live each day to the best of our abilities.

Peace to all,
Lisa

Bert
09-11-2003, 11:47 PM
Lisa,

My "comments" as you mentioned were nothing more than a renumaration of published and actual statistical facts. I don't recall making light of the fact that some of us have lost loved ones to HCM. I regret to inform you, that I too have lost loved ones, but to other diseases such as cancer, and to tragedies such as car accidents. Unfortunately, I have gotten to know the pain you are referring to in more ways than one, and as many others do, still live with it every day.

In addition, I never argued that my point of view should be the eyes of the world. All I've done, is expressing my skepticism about what is being reported and how, as well as simply offer another perspective about risks and the prevalence of a disease. What people do with that information is up to them. I do not, have not, and will not tell anyone how to live their lives. Again, I'm just sharing information like anyone else, for people to make a choice with.

I know I've become a thorn on the side of many HCMA members, and will probably eventually be banned for speaking my mind. If that's the case, I certainly can live with it. But, I think that not being challenged or questioned is unhealthy in the quest for a better understanding about HCM and the people it does afflict.

Meanwhile, the goal is unquestionably to live life to it's fullest. and that can be manifested in many different ways. And yes, to keep the memory of those lost, wether it's at war, as a result of car accidents or HCM is a duty that the rest of us left behind need to honor and not make light of.

Take care folks, and be well.

Bert

SharonBates
09-12-2003, 01:34 AM
Hello Everyone,
I am not going to reply to everyone’s post. Everyone made good points (even you Bert). Isn’t that what the message board was designed to do...allow us to share information, ideas, thoughts and feelings! Thank you to everyone at HCMA for your vision, time, efforts and encouragement. This is a wonderful place to learn and grow. Each article that is posted is more information I would not have been able to find on my own...Thank you! I hope that this “discussion” doesn’t leave a bad taste in anyone’s mouth and that everyone feels free to share their opinion.

As most of you know I formed the Anthony Bates Foundation last year. Oh, did I mention that we promote the occasional heart screening event. In the past two years, 5 events in Kansas and Arizona with our 6th event underway for October 26th in Manhattan, KS. Screening as we know it is not perfect...put it serves a bigger purpose. We have had the opportunity to do over 1,000 FREE echocardiogram screenings for young people. At no time has our organization, myself or any one of its representatives manipulated perceptions to profit from others anxiety, peddle fear or exaggerate the prevalence of HCM.

Our purpose is to educate, educate, educate. We have reached tens of thousands of people through our efforts. We have had the opportunity to be involved in numerous radio interviews, TV interviews, newspaper and magazine articles written, published and circulated to thousands, pass out thousands of flyers about our events, a web-site that touches many more, sent out thousands of letters and Anthony Bates Foundation pamphlets and HCMA brochures to the medical community in the areas regarding our efforts. If you have never put together a heart screening event, you might not be aware of all the time, effort and PR work that is involved in making such an event come together. The bottom line purpose - to educate.

Soon our promotional video will be ready. Yes, it talks about sudden death in athletes...Anthony was one of those athletes that died from an undiagnosed heart condition called HCM. He didn’t have a choice, but others will because he lived and died. So we are entitled to honor his memory with our efforts to save lives. Wouldn’t that be cool if our efforts saved the next inventor of teeny tiny machine that would save lives through a simple jolt of electricity to a diseased heart – or something even better?

Each event allows us to talk to young people, their families, and communities about the symptoms of HCM. As well as getting young people to question their body's warning signs, and parents to question their family history ties to a sudden death that may be suspect. Heart screenings widen the safety net that parents build around their children. I know many parents that are grateful for this added check on the balance sheet called a Young Life.

That is what I give to these parents and young people, information to make choices.

Blessings to all,
Sharon Bates

www.AnthonyBates.org

Lisa Salberg
09-12-2003, 08:31 AM
Discussion is fine. I have received several calls to the office and PM’s and emails with concerns about your postings. It has appeared to these people that you are attempting to “pick fights”. I have maintained my position that I do believe in open dialog and will try my hardest not to “censor” comments on the board. You have mentioned in a few postings that you think you will be “kicked off” the board. I will offer the following statement to the public on that – It is up to you if you “get kicked off” or not…If you choose to make comments that make people upset than, yes you will be taken off the board and we have every right to do so. I would rather see you continue on the board and keep in mind that yours is only one point of view and your word have the power to hurt others. In my phone conversations with you I have seen a different “Bert” than I see here on the board. Some find the keyboard to be an easy way of venting, that is part of the world of the ‘Internet” – This however is not some massive message board…it is more it is a community of people with a special link to each other.
Bert, you do not have HCM, it has touched your family via your son and we are here to support you. I am happy that your son is currently not having any symptoms related to his HCM. If the day comes that symptoms do show themselves I think those statistics of yours may have far different meaning. HCM is a hidden disability – Yes people die from HCM and some live with HCM and many LIVE as long as they can WITH HCM and someday are lost to its complications…that is reality, that is what we all live with every day.
In your next postings I hope you will be respectful of others and understand that we are here as a community of support, education and advocacy.

Best to all,
Lisa Salberg

mtlieb
09-12-2003, 10:03 AM
On Tim's articles...

I don't think the articles are meant to scare anyone, or in any way over-dramatize the risks associated with HCM. It is information, period... and what you do with it is your own deal. Yes, some people might use that information to further an agenda of caution and fear... while others might say 'stop posting those articles, i only want to hear the good news about HCM so i can send my kid out onto the football field with a clear conscience'. Most of us read the articles and realize that the deaths might have been prevented with more awareness of the disease... so for some it becomes a call to action. And for a lot of us, reading the articles simply makes us appreciate how lucky we are to have been properly diagnosed and treated, where others were not so fortunate. It's okay to feel good about that.

The bottom line is: read the articles... don't read the articles... frankly i don't give a crap, but at least make them available to those of us who are able to read them and still maintain a fair balance of information in our heads.

Jim

Bert
09-12-2003, 10:11 AM
Dear Sharon,

Thank you for sharing your point of view, and the recent accomplishments of the Anthony Bates Foundation. Whenever an organization is dedicated to providing people with invaluable information, it is a benefit for an extremely grand cause. There is no arguing that point.

As far as statistics are concerned, they are not mine. They are for public consumption and meant to educate people as well as offer a different point of view, nothing more nothing less. When our family was first exposed to HCM, we were hit with information we were not ready to decipher. It could have been the timing of it all and the sequence of events, but I have no one to blame for myself for seeking advice, and putting my son through a rollercoaster of diagnostic tests. Since then, I've discovered that there is a great deal more to it than that, and I've begun to question things; statistics, diagnostic tests, medical practices for example. Unfortunately, it is perceived as a form of disrespect, or an attempt at "picking fights". If that's the case, I'm afraid that we will never have that wonderful place where we can all learn and grow.

In any event, I'm happy to report, that I spend a great deal of time raising money, and promoting awareness with regards to implementation and usage of AED's in our own community (not just athletic events). Through the help of the athletic training program at our local college and our local hospital, we've been able bring qualified personnel to our area to educate people about the life saving benifits of AED's. As you can see, we're all working towards the same goal of saving lives, but in different way.

I commend you for all you efforts and on a personal note, thank you for supporting the free-flow of information, ideas, thoughts, and last but not least feelings.

Respectfully yours,

Bert

Lisa Salberg
09-12-2003, 10:26 PM
Bert,
You are welcome... the HCMA is happy to provide this valuable service to all who visit this site.

Lisa

Diane Tipton
09-25-2003, 04:15 PM
I have to say I was very moved by the articles. I am thankful that we found out about our son's HCM before a disaster happened. However, he played football in 103 degree heat many, many times in 7th grade. We made the decision for him not to participate in 8th grade about a month before he was diagnosed. It was not based on any information, just a "gut" feeling that he should not play that year.

I did not know HCM existed, or even how to find out if my son was at risk. He had an atheletic physical which showed NOTHING wrong.

I think if articles such as this convince parents to have an Echo before the child is allowed to play organized sports, it is worth it. HCM is uncommon, but every year we hear of 3-5 school atheletes that die due to this condition. When it is preventable, one is too many. If there were no news reporting when this happens, parents would stay ignorant, as we were.

Bert
09-26-2003, 03:53 PM
Diane,

I'm glad that you found these articles helpful for your overall awareness of HCM. As far as physicals are concerned, even if you standardized the physical exams so that you are trying to detect athletes who are at risk of sudden death, the incidence of SCD is so low it could never be made a public health priority worthy of an effort. The effort, as some physicians have mentioned, would be like "trying to find a needle in a haystack. From 1985 to 1995, 158 cases of SCD during competitive exercise had been documented in the U.S.

Depending on how you define the denominator, the incidence of SCD in athletes is somewhere around one in 150,000 to one in several million participants (we have over 4 million high school athletes today). Only four sports (football, basketball, track and soccer) have been associated with more than five sudden deaths, yet more athletes and younger children are being included in screening. This makes the examination more inclusive, thereby making the effort less effective.

What can the sports physical exam detect? The Mayo Clinic reported that significant cardiac abnormalities were found in 0.39% of 2,739 athletes who were screened. If we assume that the Mayo Clinic screening procedure is reproducible nationwide, then we are accepting that one in 500 kids will be disqualified from competing in order to find an illness with an incidence of one in 100,000. In other words, we will be disqualifying thousands of kids who will never have a problem.

Even if we accept that they could find an anomaly in one of 500 kids, they have no way of knowing that these kids will have a problem. On the other hand, it is possible the athlete who will experience SCD will have slipped through the screening process. When a disease incidence, like HCM, is very low (usually less than 5%), a positive test result is more likely to be a false positive than a true positive.

Nevertheless, I do agree with you about physical exams, as I believe that it is a medical event that is not inspired on medical need. If there is no scientific way of preventing athletes from getting injured or dying, then should we contend that an athlete can never be "cleared" to play? Probably explains why there is no justification for performing physicals to prevent sudden death.

Just offering a different perspective. Feel free to agree or disagree as none of it will be taken personally. Just informing that's all...

Best to all, especially the "little ones" who have not experienced all of what life has to bring.

Bert