There is a lot of information on this site. We hope that you find the answers to the questions that brought you here. If there is one page you should read, it is this one. This page explains why we are on this journey.
#1: The Pediatric and Medical Examiner Communities need to be educated. Simon died when he was three months old. Whenever a baby dies and there is no logical explanation, it is called SIDS. Fortunately, we got some unique advice. Our pediatrician and coroner told us to get our hearts checked because “babies just don’t die.” An electrocardiogram (ECG) exam led to Phyllis (mom) to discover Long QT Syndrome (LQTS), a genetic arrhythmia. That was the beginning of our journey. In fact, a study conducted by Dr. Michael Ackerman at the Mayo Clinic, has linked up to 15% of all SIDS deaths to LQTS. Every baby (or family member) that dies suddenly and unexpectedly should trigger a conversation about heart screenings between parents, pediatricians and coroners.
#2: The heart is an important organ and should be checked. When our kids are born, they receive a battery of genetic tests as recommended by the American College of Medical Genetics. All of these tests are valuable, but the incidence of some are very rare (PKU 1:25,000; Maple Syrup Disease 1:100,000; Congenital Deafness 1: 5,000; Congenital Adrenal Hyperplasia 1:25,000). Our children are also subjected to mandatory exams for hearing, sight and BMI in schools. Data from our heart screenings (and other similar organizations), show that one out of every 100 kids has a heart condition. Since, sudden cardiac arrest is the #1 killer of student athletes and takes the lives of thousands of children every year, we should be checking the hearts of our children.