Your gentle touch, your tender care. A smile as bright as sunshine; a heart of no compare.
A spirit that will glow forever, in the memories that we share.

Friday, November 4, 2011

Register for the December 3rd Heart Screening Event!

Registration is now open online at http://www.simonsfund.org/get-screened/register for all youth between the ages of 5 and 19 for the heart screening event that will be held on Saturday, December 3rd from 8:30-4pm at Downingtown High School West, 445 Manor Avenue, Downingtown, PA.  The event is FREE, although donations to Simon's Fund will be gladly accepted.

Simon's Fund, who is sponsoring the event, has found that approximately 1 out of every 100 children is found to have a potentially life-threatening heart condition.  So far, 30 children out of 3,000 checked during the heart screening events hosted by the organization have been able to detect previously unknown structural or arrhythmic problems and are living with the knowledge and treatments that will save their lives.  

As Aidan's mom, I can't emphasize enough the importance of taking advantage of this rare opportunity.  If we had had such an opportunity before our son died, we may have been able to detect his heart condition and take measures to keep him healthy.   Aidan, like nearly all other children who die from Sudden Cardiac Arrest each year, seemed to be in perfect health until the moment he collapsed.  There was no warning for us.  We had no chance.  You have a chance to protect your children with this screening.

No one looks forward to these events, admittedly.  Will your child be the 1 in 100?  It's a scary, scary thing to think about, and it's tempting to not show up, especially on a Saturday when the weather might be beautiful and the kids have birthday parties and fun things to do.  And, for the older ones, there's the explanation that you'll have to provide; the "Why are we doing this, mom?"  I get that.  It won't be easy.  But it's much easier than paying the ultimate consequence.  And the peace of mind will be SO GREAT.

So here's how it works:  You'll sign up here and then you'll get an appointment time that works for you.  You'll also fill out a health history questionnaire.  On December 3rd, come with your family at your designated time.  A nurse will take their vitals.  Your child will be escorted to a patient table behind a privacy screen (parents are welcome to join), where he will be asked to lie down.  A few sticky tabs will be place on the child's chest, arms and legs.  A few teeny clamps attached to wires will be fastened to the loose ends of the sticky tabs.   Your child will be asked to be completely still for about 30 seconds.  And that's it.

If something shows up on the ECG (also called an (EKG), your child may get an echocardiogram (an ultrasound of the heart to check for structural abnormalities).  Many of the teenagers you've heard about in the news lately who have died of a sudden cardiac event were found (after passing) to have had a cardiomyopathy, or enlarged heart or part of the heart.  

ECGs detect approximately 80% of all potentially life-threatening heart conditions.  Yet they're nearly impossible to order for your family if there is no known prior heart event in a family member.  If you're lucky enough to get a prescription for one, it costs upwards of $90 per person to have done.  And then there's the question of who's reading the printout-- which can be a huge factor in detection.  At our December 3rd event, the very best pediatric cardiologists and electrophysiologists from A.I. Dupont Hospital will be reading your child's ECG.

So, sign up, and show up!  And tell others to do the same.  We're counting on you to help us keep kids' hearts safe.  

See you on the 3rd!

ps-- The event is free, but please think about bringing a donation for Simon's Fund!



5 comments:

  1. Thank you so much for providing information about this event! I will be sure to sign my children up. Thank you for your proactive efforts to prevent undiagnosed heart conditions in other children, as a legacy to your son, Aidan. :)

    ~A mom in Downingtown

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  2. This is great to know. Thanks for sharing. Is 5 the minimum age for a reason?

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  3. Yes, 5 is the minimum age, which is actually very generous of Simon's Fund and the DuPont doctors who will be reading the ECGs on the 3rd. Usually, the minimum age is 10, for funding and a few other reasons. But because Aidan was so young, we were granted permission to allow younger children this opportunity.

    If you have any other questions about it, Darren Sudman, Simon's dad and president of SF, will be happy to answer them: darren@simonsfund.org.

    Thank you!

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  4. Just registered my children and was put on the wait list. Does that mean that someone will contact me for an appointment time or should li just show up and hope I can get in?

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  5. If you're on the wait list, do NOT come on Saturday. We will be in touch with you shortly when we schedule the second screening event, which will be early in 2012. Good question, though-- thank you for helping us clarify!

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