That sad and painful reality was lived by Phyllis and Darren Sudman of Plymouth Meeting, parents of Simon Brach Sudman, who died when he was just 3 months old, on the snowy winter evening of Jan. 24, 2005, of Long Q-T Syndrome, a little known defect of the heart's electrical system -- and one that can cause sudden death.
If there's any good news to this story, however, it's that once diagnosed, LQTS is treatable.
Despite being an ideal infant, said his parents, little Simon did not wake up from his nap that winter afternoon. "LQTS is a disturbance in the heart's electrical system that can lead to fainting and sudden death," explained the Sudmans.
"Fainting is never normal, and needs to be recognized as a critical warning sign that something is wrong. When a child faints, he or she should have his or her heart checked out immediately, because that's a sign that something is not right."
Since Simon's death, the Sudmans have taken steps to make his story and the condition known to people who are around children, such as parents, teachers, school nurses and pediatricians. They've also brought the issue to local politicians.
Legislation introduced by State Rep. Joshua Shapiro, for example, a Democrat in Pennsylvania's 153rd Congressional District, led to LQTS Awareness Week in the state in January. The programming coincided with the first anniversary of Simon's death.
Also in Simon's memory, his parents have set up "Simon's Fund" to prevent the death and improve the lives of children by promoting awareness of LQTS.
"The core mission of the fund is to make sure no other family has to experience what we've experienced," said Phyllis Sudman, a sales vice president in America Online's Bala Cynwyd office. "There is nothing worse than burying a child, but you can either sit back and grieve -- which is, of course, a very necessary and important process, and very normal -- or decide to take action, along with the grieving, to get the message out there.
"Doing that has helped not just Darren and I, but also our family and friends to deal with what happened.
"The coroner ruled the cause of Simon's death as unknown, but family tests revealed that a probable cause was LQTS," said Phyllis, who was diagnosed with the congenital defect at Abington Memorial Hospital following Simon's death.
She admitted that she never knew she had it, because she was always active and had no symptoms. Since there were no signs of it -- and since the test isn't administered routinely by doctors -- Simon was never tested.
Now that Phyllis knows she has it, she is tested every six months, she said, as is the couple's daughter, Sally, who turned 4 on Dec. 9 and is LQTS-free, as is Darren Sudman.
A Need for Testing
Coming to terms with Simon's sudden death has meant reaching out -- mostly to the Jewish community but also to the community at large, since LQTS affects the general community in a number of ways, according to Darren Sudman, owner and president of CDI Properties, a real estate and property management company in Norristown.
"The truth is we'll never know for sure how Simon died because while LQTS was the likely cause, it's also hard to trace since it's an electrical problem of the heart. Still, we want to tell people that while LQTS is highly treatable, children must first be tested for it.
"The most common way is through an electrocardiogram, but a stress test also will reveal the defect," he said.
LQTS is treated with either beta blockers -- drugs that regulate the activity of the heart -- or an internal defibrillator.
"At least 10,000 children die every year of sudden cardiac arrest, with LQTS being the cause of up to 15 percent of Sudden Infant Death Syndrome, or SIDS. LQTS most commonly strikes children between the ages of 8 and 14, when they're engaged in athletic activities or stressful situations. In fact, it's three times more common than childhood leukemia in the United States," acknowledged the child's father.
What is needed, he continued, is for the words "sudden cardiac arrest" to be equated with the more everyday phrase "heart attack," so that the condition is taken more seriously.
He also stresses the need for the kind of testing that's done in Japan, where all infants are screened for LQTS, and in Italy, which tests all school-age children for the defect. "Such testing is inexpensive, about $11 a child," he reported, "and can be done here as well."
Ronn Tanel, M.D., assistant professor of pediatrics and attending electrophysiologist/cardiologist at the Children's Hospital of Philadelphia, who came to know the Sudmans in connection with a LQTS test he performed on Sally at CHOP, talked about the medical community becoming more aware of the condition.
Said Tanel: "While it's not very frequent -- and it's hard to know how frequently it occurs because it can be elusive -- it's more readily recognized today. And while it's more overlooked than not, tests for it are done if there is either congenital or genetic evidence or symptoms.
"But since we don't truly understand it in the genetic make-up, [having] a family history of it doesn't mean all members of the same family will have it."
LQTS will be the subject of "grand rounds," the primary medical condition to be explored during doctors' rounds, at Abington Memorial Hospital on Jan 17.
For information on the second annual Simon's Soirée (the first benefit raised $150,000) scheduled for Jan. 27 at Normandy Farm in Blue Bell, call 610-238-0215 or log on to: www. simonsfund.org.