Darren Sudman, co-founder and CEO of Simon’s Heart, discussed the non-profit’s work in discovering hidden heart conditions and preventing deaths from Sudden Cardiac Arrest in children.  He related the story of son, Simon, who died at three months.  Unlike most cases of Sudden Infant Death Syndrome, the Sudmans learned what took their child’s life – a genetic condition, Long QT.  Long QT syndrome  is a heart rhythm condition that can cause chaotic heartbeats that could trigger a sudden fainting spell or seizure. In some cases, it causes sudden death.  They also discovered that Simon’s mother had the same condition.  They learned that apparently healthy children can have the condition, and that it’s only when a youth athlete dies on the court or playing field that it’s discovered.  The Sudmans formed Simon’s Heart to raise awareness of the symptoms and to advocate for heart screenings for young athletes.  Simon’s Heart works with school districts to offer free CKGs and other tests to kids before they participate in sports.  He explained that it takes a district of 2-3,000 students to organize a clinic as only 10% of parents take advantage of the offer.

Mr. Sudman noted that many deaths, including drownings or single car accident deaths, could be undiagnosed cardiac incidents and he calls for better reporting to help researchers and to help survivors check other family members for a hidden defect.  He urges everyone to learn CPR, but notes you don’t need a certificate to save a life, rudimentary chest compressions can keep someone alive until real help arrives.  Toward this Sion’s Heart has created a ‘jukebox’ of 100 beat per minute songs to help with emergency CPR.   They also have instructions to help communities, churches or groups crowd fund raise for AEDs which can be installed in a gym, rec center or school for as little as $900.   

To learn more about Simons Heart go to simonsheart.org.