Darren and Phyllis were overcome with joy in this photo taken in 2005. Phyllis is holding Sally, then 2, and Simon, who had just been born. Tragically, Simon died three months later of sudden cardiac arrest.

by Len Lear

In 2005, a son named Simon was born to Darren and Phyllis Sudman of Lafayette Hill, who are now 42 and 41, respectively. He weighed six pounds, 15 ounces at birth, and had an APGAR score of eight and nine. (This is a quick test performed on a baby at one and five minutes after birth. The one-minute score determines how well the baby tolerated the birthing process.)

Every few hours he would finish a bottle, except for a four-hour stretch overnight. In other words, he seemed to be perfectly normal. However, at seven weeks of age, Simon smiled for the first time, and 47 days later he died.

By all signs, Simon Sudman appeared to be healthy and normal, but his heart had a tiny unknown defect called Long QT Syndrome. His parents had never heard of this condition before, let alone known that Phyllis also had the condition. Many people think that sudden cardiac arrest (SCA) is strictly an adult phenomenon, but the fact is that SCA is the number one killer of student athletes. It is also responsible for up to 15% of all sudden infant deaths, according to a study conducted by Dr. Michael Ackerman at the Mayo Clinic.

Simon was one of thousands of children to die of sudden cardiac arrest in 2005. Some were babies, and others were high school athletes. When children are born in the U.S., they receive a battery of genetic tests as recommended by the American College of Medical Genetics, but they are not tested for the conditions that may lead to SCA.

Instead of retreating into a shell of self-absorption and solitude, which would have been understandable, the Sudmans decided to do everything in their power to keep other children from suffering the same fate as Simon.

So in 2005 they established Simon’s Fund in memory of Simon. “We have raised about $1 million since then,” Darren told us last Friday. Thanks to the funds the Sudmans have raised, the organization is able to provide free heart screenings to children, primarily in the Greater Philadelphia area.

The fund organizes and facilitates the screenings with medical teams. This May, they hosted their first Mother’s Day screening where they screened moms and kids. They also sponsor medical research projects, host awareness events, work with major medical institutions and promote legislation.

As a result of Simon’s Fund, 5,931 heart screenings have been done, and 49 students have discovered unknown, potentially fatal heart conditions. One of those children is Valerie Krawitz, 12, who will be entering 7th grade this fall at Colonial Middle School in Plymouth Meeting.

Thanks to Simon’s Fund, Valerie had a heart screening at the age of 7, which led to a diagnosis of Long QT Syndrome and an Atrial Septal Defect (ASD). As a result, she underwent heart surgery to repair the ASD. She now takes beta-blockers for the Long QT. Her physical activity is limited, and she is careful not to engage in any physical activity that could potentially be dangerous. But she is alive and well.

According to Jeffrey Krawitz, her father, “The doctor’s quote to us was, ‘If this isn’t repaired, her life will be shortened.’ She would have only lived to be in her 20s if the hole hadn’t been discovered and repaired. Simon’s Fund, quite simply, saved our daughter’s life. There is no possible way to ever thank the Sudman family for the gift that we are able to keep, Valerie. The fact that they, in their son’s honor, have been able to accomplish so much and continue to save other people’s children through Simon’s Fund is truly amazing. Simon’s name will continue to live on through every heart that keeps beating because of Simon and his family.”

According to the Sudmans, getting your child’s heart screened, coupled with a complete family medical history, is the best way to prevent sudden cardiac arrest and death. A heart screening, which begins with an electrocardiogram (ECG), takes about two minutes and records the heart’s electrical rhythm (the squiggly lines). An ECG can detect up to 85% of all of the conditions that lead to sudden cardiac arrest.

The conditions that lead to SCA and death fall into two categories: structural and electrical. A structural heart defect, like cardiomyopathy, prevents the heart from working properly; it’s too big, or the parts are in the wrong places. An electrical heart defect, like Long QT Syndrome, interrupts the heart’s rhythm, but most of these conditions are detectable and treatable.

The Sudmans not only have been educating parents about the need for their children to be heart-screened, but they also worked tirelessly to get the Pennsylvania State Legislature to pass the nation’s first law to protect student athletes’ hearts. Called the Sudden Cardiac Arrest Awareness Act, it officially became law on May 29, 2012, when it was signed by Gov. Tom Corbett.

The legislation requires coaches to remove any student athlete who exhibits signs or symptoms of sudden cardiac arrest such as dizziness, fainting, chest pains, etc., while participating in an athletic event. If the student athlete has a history of these symptoms at any time prior to or following an athletic activity, he or she cannot return to participation until evaluated and cleared in writing by a licensed physician or certified registered nurse.

For more information about Simon’s Fund, call 610-662-6948, email info@simonsfund.org
 or write to Simon’s Fund, PO Box 61, Lafayette Hill, PA 19444.