As I sit here on the seventh anniversary of his death, I can say that some good has come.

(1) Phyllis discovered her potentially-fatal heart condition – Long QT Syndrome.

(2) Jaden joined our family.

(3) To date, at least 35 kids are living safer lives knowing about their hidden heart defect.

(4) I have met some pretty incredible, passionate and selfless people that would never have entered my life but for Simon’s death.

This day still sucks.  There are a bunch of days that still suck.  But in between, there’s something to appreciate.  There’s some good that’s come of this and fortunately, through the grief and pain, I can see it now.

In daylights, in sunsets, in midnights
In cups of coffee
In inches, in miles, in laughter, in strife.

In truths that she learned,
Or in times that he cried.
In bridges he burned,
Or the way that she died.

In five hundred twenty-five thousand six hundred minutes.

As we look back at 2011 and toward 2012, we’re going to change the lyrics a bit.

In heartbeats, in school kids, in volunteers
In screenings (and cups of coffee)
In generous donors, in ECHOs, in ECGs

In truths that she learned (through raising awareness),
Or in times that he cried (because of a life-changing diagnosis).
In corrective procedures performed,
Or stories of the thousands that died.

In three thousand seven hundred and nine hearts checked, and thirty five lives changed.

Happy New Year!  We are so grateful for your support (just like these kids).

LaMarcus Aldridge of the Portland Trailblazers was diagnosed with Wolff-Parkinson-White Syndrome.  He underwent a medical procedure.  Jeff Green of the Boston Celtics discovered an aortic aneurysm and underwent surgery to correct the problem.   Chuck Hayes of the Sacramento Kings failed his physical due to a heart condition.  In a league of 450 players, almost one percent of them discovered a potentially fatal heart condition in the last week.

The NBA is no stranger to these heart conditions – Yinka Dare (died), Eddy Curry (surgery), Reggie Lewis (died), Ronny Turiaf (surgery), Kevin Duckworth (died), Cuttino Mobley (retired), Etan Thomas (surgery), Jason Collier (died), Robert Traylor (died), Zeijko Rebraca (retired), Fred Hoiberg (surgery) and Mikahil Torrance (retired).

These players had access to the best medical care.  Some of them were screened, some treated, and unfortunately, some died.  Seven years ago, our son, Simon, died suddenly.  He wasn’t a basketball player; he wasn’t screened; he was three months old.  Through testing, we discovered that he, like many of these athletes, had a heart condition.  His was Long QT Syndrome.

Following his death, we started to pay attention to the stories about the thousands of other kids — infants, toddlers and teens — who drop dead every year from sudden cardiac arrest.   The kids are sleeping in their cribs.  They are swimming with friends.  They are driving their car.  They are playing sports.  Their deaths are often times chalked up to SIDS, drowning, fatal auto accident and/or dehydration.

Sudden cardiac arrest is the indisputable leading cause of death of adults in the U.S.  It is also kills the most student athletes every year.  If our children are going to face these realities, why aren’t we checking hearts and saving lives?

In 2006, the NBA was the first league to institute a standard cardiac screening for all of its players.  As a result, the stories are less tragic.  Like the stories from last week, conditions are being detected and treated; fewer players are dropping dead.

Back in the 1980’s, the Italians started screening the hearts of all school-aged children.  As a result, they reduced the incidents of sudden cardiac death in kids by 89%.  Today, our organization, Simon’s Fund, along with other organizations around the country, are providing heart screenings to tens of thousands of students every year.  Collectively, we are finding that one out of every 100 students we screen has an undetected and potentially fatal heart condition.  These are reasons enough to begin screening our children’s hearts.

We screen our kids at birth for dozens of rare genetic conditions.  At school, all of our children get their eyes examined and hearing checked.  It’s time for us to follow in the footsteps of the NBA and the Italians and start checking our kids’ hearts too.

]]> http://www.simonsfund.org/just-a-thought/lessons-from-the-nba-checking-hearts-and-saving-lives/feed/ 0 http://www.simonsfund.org/just-a-thought/the-ultimate-gift-exchange/ http://www.simonsfund.org/just-a-thought/the-ultimate-gift-exchange/#comments Tue, 20 Dec 2011 01:22:45 +0000 dsudman http://www.simonsfund.org/?p=3239 See More]]> A small group of us got together on Sunday morning at Panera. Five families showed up.   The first family shared their heart screening experience . . . we thought it was a good idea to go the heart screening . . . we almost didn’t’ go . . . we went  . . . we didn’t expect to find anything . . . we’re so glad that we went.  While the heart conditions were different, the conclusions were the same – we need to help other families.

This party was reserved for an exclusive group of people – the parents of children whose hearts have been impacted by our screenings.  It’s called Simon’s Club.  Now, in exchange for the gift their child received, they’re paying it forward by ensuring that Simon’s Fund continues to check hearts and save lives.  This is the ultimate gift exchange.  We are so excited to have their ideas, passion, commitment.

I was never sure when I could stop crying every day.  It just kind of happened.  I wasn’t sure when I was allowed to start going to parties or other kid’s birthdays and have a good time.  That just happened too.  As I drove by the cemetery for the screening, I wanted to stop – I felt obligated to stop – but I didn’t.  I wondered that if Sally or Jaden were living in Frazier and I had not seen them in a while, would I have stopped?  Was I “with” Simon all day at the screening so I didn’t need to stop?  One of the things about being a grieving parent is that I normally don’t have the answer . . . just so many questions.  That’s the tombstone.

The milestone is exciting.  Downingtown marks our fourth screening this fall.  In the past, we did two screenings per year.   Historically, all of our screenings were done with CHOP.  However, this fall, we worked with three hospitals:  CHOP, duPont and Cincinnati Children’s.  In the past, all of our screenings were in the suburbs of Philadelphia.  In November, we held a screening in Cincinnati, OH.

Downingtown was our first event with duPont hospital.  All of the students registered on our new website.  Local pediatricians, school nurses and the National Honor Society volunteered.  We screened 267 students and several were referred for follow up.  We have a waiting list of over 300 students, so we’ll be heading back there in a few months.  Most importantly, we helped the Silva family, Steve, Christy, Devin and Quentin, remember Aidan.  He was seven years old when he died suddenly last summer.

Given all that we’ve accomplished over these past few months, I think that Simon is OK that I didn’t stop by.

‘It’s a rare occurrence.” That’s a comforting notion until it happens to your child.

Our child, Simon, was 3 months old and taking a nap when he died suddenly. The Lees’ son, Jeffrey, was a University of Pennsylvania senior running the Philadelphia Marathon last weekend. Despite these differences, we now share a stark reality: We’ll always wonder what our boys would have been when they grew up.

Every year, thousands of children and young adults drop dead from sudden cardiac arrest. They are sleeping in their cribs. They are swimming with friends. They are driving a car. They are playing a sport.

Their deaths are often chalked up to sudden infant death syndrome, drowning, fatal auto accidents, or dehydration. Simon’s death was attributed to SIDS. But through independent research and education, we discovered that he actually died from long QT syndrome, a hereditary heart arrhythmia that is responsible for 30 percent of all unexplained sudden infant deaths, according to research by the Mayo Clinic.

Sudden cardiac arrest is a leading cause of death among American adults and student athletes. The conditions that lead to it are detectable and treatable, making these deaths very preventable. So why aren’t we checking young hearts and saving lives?

We screen our kids at birth – and often in utero – for dozens of rare genetic conditions. At school, they get their eyes examined and their hearing checked.

However, the heart, arguably the most important organ in the body, is never screened. Even though a painless electrocardiogram, or EKG – which takes about 30 seconds and costs about $15 – can detect up to 85 percent of the conditions that lead to sudden cardiac arrest and death, our children’s hearts go unchecked.

In the 1980s, Italy started screening the hearts of all school-aged children. As a result, it has reduced the incidence of death from sudden cardiac arrest among children by 89 percent.

Our organization, Simon’s Fund, and others around the United States are providing free heart screenings to tens of thousands of students every year. We are finding that one of every 100 students we screen has an undetected and potentially fatal heart condition. That’s not very rare.

Deaths during marathons may be unusual, but this isn’t just about marathon runners. It is about Akhir Frazier, a Philadelphia high school student who died suddenly while playing basketball last year. It is about Samuel Gitt, a high school football player who died suddenly at a football camp in central Pennsylvania a few months ago. It is about Aidan Silva, an elementary school student from Downingtown who died suddenly last year while playing with his brother. And it’s about thousands of other kids.

It’s time to stop pretending that sudden cardiac arrest in children is rare. It’s time to acknowledge that prevention is possible and cost-effective. And it’s time to start using our heads to protect our kids’ hearts.

In 1986, I participated in a cholesterol screening study at the University of Cincinnati.  I was 16 at the time and was the only kid getting his cholesterol checked.  This is pretty remarkable considering that they knew high cholesterol was hereditary and killed people, that millions of adults had high cholesterol and that those adults had millions of kids with their cholesterol genes.  Now, twenty-one years later, kids are going to get checked for a potentially-deadly problem we’ve known about for a long time.

Today, we know that sudden cardiac arrest kills kids.  Unlike cholesterol, that takes a while to kill you, conditions of SCA can kill you right away.  These conditions are hereditary.  However, we are not checking adults or kids for these conditions.  We wait until they are symptomatic or an event occurs – that’s pretty logical (sarcasm).  I’m guessing that by the time I am 63, they’ll start screening kids for conditions that lead to sudden cardiac arrest.  That’ll be great, except for the 50,000 – 100,000 kids that drop dead before then (not to mention all of the adults).

Read the article here

I met a mother and her son that never knew Jose, but through water polo, have been impacted by his life, so they sold t-shirts in his memory.  I met another teammate that wanted to us to know how much he appreciated the heart screening; he was Jose’s good friend.  I shared hugs and tears with Luisa as we remembered our sons, and contemplated the impact that their lives have on other people.   I got acquainted with a hospital staff that turned my request for a one-off heart screening into a city-wide study of 1000 students.

I moved away from Cincinnati twenty-four years ago.  However, today, I felt like I was back home.

Cardiac Team from Cincinnati Children's

Luisa Cerda, Jose's Mother

Over the last few years, there has been a big push (driven by the NFL) to protect the heads of students athletes.  Far too many students experience concussions, and the symptoms are ignored.  This can lead to severe injury or possibly death. This bill prevents such careless behavior by ensuring that any athlete with symptoms must be cleared by a medical professional before returning to competition.

But PA lawmakers aren’t stopping there.  Unlike the other states, PA is also looking after the hearts of student athletes. Sudden cardiac arrest is the #1 killer of student athletes.  Fainting is the #1 warning sign of sudden cardiac arrest.  So it only makes sense to have a law that protects the heart too.

The Sudden Cardiac Arrest Prevention Act (HB 1610) unanimously passed the House in October.  It protects the student athlete by requiring any student who exhibits symptoms of sudden cardiac arrest be examined and cleared by a medical professional before returning to competition.  It is now being considered in the Senate.  We anxiously await its passage and look forward to PA being the first state that protects the head and the heart of our young athletes.

So, back to my original question . . . Today, we are launching a new website for Simon’s Fund.  I know that a seven year old boy is probably not getting very excited about a new website (unless there is some kind of fighting or competition going on).  However, we are.  We’re excited to provide a great resource for parents and coaches so they can protect kids from sudden cardiac arrest.  We’re excited to share stories from some of the kids that we’ve helped.  We’re excited to promote the sale of unique heart-themed items that raise money for heart screenings and other life-saving initiatives.

It’s not the traditional way to celebrate a child’s birthday.  It’s not the ideal gift.  However, for us, it’s special because on his seventh birthday, Simon is giving a gift to all of us.  And every day hereafter, he’ll continue to lead the way for us to check hearts and save lives.