Phyllis and Darren Sudman didn't set out to save the world. But when their 96-day-old son Simon died of an undiagnosed genetic disease known as "Long Q T Syndrome" last year, the Plymouth Meeting couple knew just what they had to do.
LQTS is an abnormality of the heart electrical system due to defects in heart-muscle cell structures called ion channels. These electrical defects predispose affected persons to a very fast heart rhythm (arrhythmia), which leads to sudden loss of consciousness and may cause sudden cardiac death.
First clearly described between 1957 and 1965, the syndrome may be inherited (the genetic form) or acquired, or due to the administration of medications, which are contraindicated in patients with this illness.
The usual symptoms are fainting or sudden death, and is responsible for up to 15 percent of SIDS (Sudden Infant Death Syndrome) deaths each year. Little Simon Brach Sudman was one of those casualties.
"The coroner ruled the cause of Simon's death as unknown, but suggested we have EKGs done. We did, and I was diagnosed with the same condition that took Simon's life," explains Phyllis Sudman. "It was a shock because I never had the symptoms. But I was placed on a beta blocker for the rest of my life, and I see my cardiologist every three to four months."
Too often, Darren Sudman adds, "Symptoms of LQTS are overlooked or misdiagnosed as fainting or exhaustion. The biggest tragedy of LQTS is that death is avoidable. The frequency is unknown, but it appears to be a common cause of sudden and unexplained death in children and young adults, most commonly striking children between the ages of 8 and 14, when they are engaged in athletic activities or stressful situations."
In fact, LQTS is said to be three times more common than childhood leukemia in the United States.
"And so," Darren Sudman continues, "one of the main messages we want to get across to other parents, teachers, pediatricians and coaches is that fainting is never normal, and needs to be recognized as a critical warning sign. When a child faints, he or she should immediately get his or her heart checked out because that is a sign that something is not right. LQTS can be detected and treated. If we know what to look for, then we can save lives."
A Fund of Hope
Even though it's too late for Simon, the Sudmans have decided to put forth all their efforts to save someone else's child. With the help of family and friends, the Sudmans founded Simon's Fund, a charity dedicated to raising awareness about this silent killer.
They have already raised approximately $125,000, and are in the process of deciding where to best use this and other monies that will hopefully be raised in the months and years to come.
"We are working with an advisory board, including cardiologists from Children's Hospital," says Darren Sudman. "Last year, legislation was introduced in the Pennsylvania House of Representatives to designate the week of Jan. 23 to Jan. 28 as 'Long Q T Syndrome Awareness Week,' hopefully to try to get more screening done for children.
"And just recently, I attended a conference in Boston – a gathering of electro-physiologists – and met with some of the top doctors in the world in an attempt to get as much information as possible and use that to spread the word to as many people as possible."
Adds his wife, "If we can stop kids from being misdiagnosed, then we have done what we set out to do." u
For more information, write: the Philadelphia Foundation, c/o Simon's Fund, 1234 Market St., Suite 1800, Philadelphia, PA 19107; or visit: [email protected]