Response to Sycamore

The Sycamore school board recently declined an offer from Simon’s Fund to pay for and organize a heart screening for the students in the District.  The board said that (1) they cannot support mass heart screenings because of the American Heart Association; and (2) that this is a matter for parents and their pediatricians.  Below is our response.

Thank you for having several conversations with the board, and for considering this free heart screening.  I appreciate the gratitude expressed by the board.  However, I need to share a few thoughts.  I hope that you will accept my passion and conviction.

This is the first time that a school district has rejected a free heart screening, so I am really at a loss for words.  I am also numb and nauseous.  It is a feeling similar to the feeling that consumed me in the days following Simon’s death.  It is the feeling that I felt after learning about Jose’s death. I think that the board’s reasoning is seriously flawed.

(1)    The AHA and ACC do not recommend mass screenings for two primary reasons – the concern about who will read the reports, which leads into a discussion on false-positives, and the expense of screening all students across the United States.  These concerns do not apply to the screening at Sycamore.  First,  expense is not an issue because Simon’s Fund is paying for this screening.  Second, false-positives are always an issue in medicine, whether it is a heart screening or hearing and eye exam.  However, when a heart screening is conducted using an ECG machine and an echocardiogram, and the tests are read by trained pediatric electrophysiologists from Children’s Hospital, the risk of false-positives is drastically reduced.

According to the American College of Radiology and the Radiological Society of North America, 5 – 15% of all mammograms yield a false-positive result. Despite this,  I’m fairly confident that all of the age-appropriate females working for the District have received a mammogram.  Simply put, the existence of false-positives does not deter us from using non-invasive diagnostic tests that save lives.  Therefore, while there is a healthy debate about the feasibility of mass screenings in the United States, the AHA and ACC concerns do not apply here.

(2)    According to a study conducted by the Children’s Hospital of Philadelphia, heart screenings find undetected and potentially-fatal heart conditions.   You won’t find a study to refute that.  In fact, an ECG exam can detect 80% of the conditions that lead to sudden cardiac arrest.  Simon’s Fund has provided 2,100 free hearts screenings.  As a result, 20 students discovered potentially-fatal heart conditions.  If you want to meet two of them, watch this video.  This means that 1 out of every 100 students has an undetected heart condition.   This statistic is consistent with data from other organizations that provide free heart screenings – Young Hearts for Life, Save a Life Foundation, The Max Schewitz Foundation, The Quinn Driscoll Foundation, and others.

Sudden cardiac arrest is the number one killer of young athletes.  At Sycamore, Jose was 1 in 100.  In a student body of 1900, who are the other 18 kids?

(3)    There are many matters traditionally reserved for the parent-pediatrician or parent-student relationship.  However, that hasn’t stopped Sycamore from inserting itself and offering public service or public safety programs for the student body.  Over the past couple of years, the district has offered a program on cyber-bullying and encouraged students to get vaccinated for the flu.   I’m not sure how the board can reconcile an endorsement of flu vaccinations with a rejection of a screening for sudden cardiac arrest and death.   I don’t believe there is a way to reconcile them.  Sycamore lost a student to sudden cardiac arrest; it did not lose a student to the flu.  Pediatricians offer and insurance pays for vaccinations; heart screenings are not provided nor covered by insurance.   The sad truth is that most parents and pediatricians don’t know about the warning signs or the conditions that lead to sudden cardiac arrest, so to leave it up to them and hope for the best is careless.  I am sure Jose was examined by a pediatrician several times during his life.  He probably underwent some pre-participation exams too.  In hindsight, which sanctioned program helped Jose more – cyber-bullying or the flu vaccine?

I’m incredibly disappointed with my former school district.  After Simon died, Phyllis and I decided to dedicate part of our lives to ensure that this senseless and preventable tragedy doesn’t strike another family.  We spend countless personal hours and dollars for this selfless mission.  This consumes time that we would normally spend with our other children.   This is time that we don’t have for friends and fun.

I can’t believe that Sycamore is obstructing my ability to provide this free service.  It shocks my conscience that a group of committed parents serving on the school board will not avail themselves of every opportunity to educate and protect the student body from dangers, particularly when they can result in sudden death.  How many more Sycamore families will have to experience this tragedy before the school board is willing to (1) provide a space; and (2) send out a letter to the parents in the district?  Is that really too much to ask?

While I hope that the board reconsiders its decision, we are not going to wait for it do so.  We will bring this screening to the students of my hometown by working with the Cerda family, friends and former students.  We will step in and fill the leadership void left by the school board.  We will take it upon ourselves to check hearts and save lives.