LIFE AND DEATH, AND A MOVIE
Young filmmaker documents his family’s history with Long QT Syndrome
Tom Sutch holds a picture of himself and his brother with their father, and a photo of an aunt, Kathleen Sutch. Sutch’s father and aunt died of Long QT.
On the day he took the test to determine whether he had the same rare heart disorder that killed his father, Tom Sutch went to the hospital with a video camera.
The clip of Sutch connected to wires and beeping machines became a segment in his documentary, “Broken Hearts, Electric Shocks,” which will premiere next month at the Long Island International Film Expo in Bellmore.
Sutch’s Levittown family was stunned when his aunt died unexpectedly in 1980 at the age of 13. His father, Kevin, met the same fate in 1995, at the age of 39. But his family did not put the pieces together until 2001 when Sutch’s uncle, Bill, complaining of chest pains, saw a doctor who diagnosed Long QT Syndrome, a hereditary disorder with symptoms often brought on by stress. The disorder can cause electrical signals in the heart to become irregular or stop altogether.
Tom Sutch, 23, was a cinema student at Binghamton University when about 60 of his family members participated in a genetic study to determine who else had Long QT. More than a
dozen tested positive, including Sutch’s brother, sister, and grandmother.
By the time he came home for summer vacation last year — before he even took the test himself — Sutch knew Long QT would be the subject of his final college film project.
After his test came out positive for Long QT, Sutch spent nine months researching the disorder, interviewing relatives, compiling old footage, composing music using a computer program, and editing the film. He said the entire project cost less than $200.
Sutch said his motivation for making the emotionally demanding film was to learn more about the mysterious gene that killed his father and to encourage communication among family, many of whom were scared and angry to learn of the disorder.
“When I did my documentary, I was the first person to get everyone together,” Sutch said. “I wanted to put everyone’s story in the same place. We have an interesting story that people should hear.”
Approximately one in every 3,000 people worldwide has Long QT Syndrome, according to Sudden Arrhythmia Death Syndromes Foundation, and more than 1,000 children and young adults — the most likely victims — die of it in the United States each year.
Dizzy spells, fainting, seizures and sudden death are symptoms of Long QT Syndrome, but many of those afflicted live symptom-free. Precautionary measures can be drastic, though, because a first symptom of Long QT can be the last, said Tom Sutch’s brother, Brian.
“When you go on a Web site and they list sudden death as a symptom, it’s a little unnerving,” Brian Sutch, 25, said.
The most common ways to control the disorder are to take beta blockers and to implant a defibrillator, said Dr. Joseph Levine, who treats Brian Sutch and is the director of the Arrhythmia and Pacemaker Center at St. Francis Hospital-The Heart Center in Roslyn.
Beta-blockers control surges of adrenaline that flow to the heart when a person is startled, spikes that could set off an irregular beating pattern, Levine said. A defibrillator, implanted through surgery, jump-starts a stopped heart by applying a brief electric shock.
Although they are asymptomatic, Tom and Brian Sutch, along with their sister Karen, had defibrillators implanted.
Bill Sutch, the first in the family to discover he had Long QT Syndrome, praised Tom Sutch’s maturity in taking on the film project.
“We talked about things that were never discussed between us before,” Bill Sutch said. Kim Sutch Halpin, Tom Sutch’s mother, said she was happy her son was working on a project so close to the family.
“I don’t really sit down and look at old pictures of my husband because it’s really sad,” said Sutch Halpin, 48. “But hearing Tommy narrating with the pictures in the background made me realize how grown up he is. It just made me feel good.”
The Sutch family is not the only one on Long Island to suffer tragedy from Long QT Syndrome. In 2004, former Hofstra wrestling coach Tom Ryan’s 5-year-old son, Teague, died after passing out while playing. Doctors blamed Long QT Syndrome.
The death prompted Rep. Carolyn McCarthy (D-Mineo- la) to introduce Teague’s Act to Congress in March 2005. The bill, which never reached the House floor for a vote, was an effort to regularly screen children for sudden cardiac arrhythmia syndromes, like Long QT.
Sutch’s 40-minute documentary, which combines black-and-white archival footage with sit-down interviews, is another effort to bring Long QT to the forefront. The film includes some poignant moments, such as shots of half a dozen family members’ scars from defibrillator implantation surgery and Kim Sutch Hapin’s detailed retelling of the day her husband died.
Debra Markowitz, director of the Nassau County Film Office, helped select the film for the Expo.
“It’s a condition that nobody would think about,” she said. “It makes you wonder about all the other things out there that we don’t know about.”
Tom Sutch recognized the benefits to showing his film locally. He said he told family and friends to get to Bellmore Movies early for the 3 p.m. Expo screening on July 12 because the show might sell out.
“When I found it was going to premiere on Long Island, I thought, ‘That’s perfect,’ ” he said. “I couldn’t have asked for anything better.”
NEWSDAY
SUNDAY, JUNE 24, 2007
The clip of Sutch connected to wires and beeping machines became a segment in his documentary, “Broken Hearts, Electric Shocks,” which will premiere next month at the Long Island International Film Expo in Bellmore.
Sutch’s Levittown family was stunned when his aunt died unexpectedly in 1980 at the age of 13. His father, Kevin, met the same fate in 1995, at the age of 39. But his family did not put the pieces together until 2001 when Sutch’s uncle, Bill, complaining of chest pains, saw a doctor who diagnosed Long QT Syndrome, a hereditary disorder with symptoms often brought on by stress. The disorder can cause electrical signals in the heart to become irregular or stop altogether.
Tom Sutch, 23, was a cinema student at Binghamton University when about 60 of his family members participated in a genetic study to determine who else had Long QT. More than a
dozen tested positive, including Sutch’s brother, sister, and grandmother.
By the time he came home for summer vacation last year — before he even took the test himself — Sutch knew Long QT would be the subject of his final college film project.
After his test came out positive for Long QT, Sutch spent nine months researching the disorder, interviewing relatives, compiling old footage, composing music using a computer program, and editing the film. He said the entire project cost less than $200.
Sutch said his motivation for making the emotionally demanding film was to learn more about the mysterious gene that killed his father and to encourage communication among family, many of whom were scared and angry to learn of the disorder.
“When I did my documentary, I was the first person to get everyone together,” Sutch said. “I wanted to put everyone’s story in the same place. We have an interesting story that people should hear.”
Approximately one in every 3,000 people worldwide has Long QT Syndrome, according to Sudden Arrhythmia Death Syndromes Foundation, and more than 1,000 children and young adults — the most likely victims — die of it in the United States each year.
Dizzy spells, fainting, seizures and sudden death are symptoms of Long QT Syndrome, but many of those afflicted live symptom-free. Precautionary measures can be drastic, though, because a first symptom of Long QT can be the last, said Tom Sutch’s brother, Brian.
“When you go on a Web site and they list sudden death as a symptom, it’s a little unnerving,” Brian Sutch, 25, said.
The most common ways to control the disorder are to take beta blockers and to implant a defibrillator, said Dr. Joseph Levine, who treats Brian Sutch and is the director of the Arrhythmia and Pacemaker Center at St. Francis Hospital-The Heart Center in Roslyn.
Beta-blockers control surges of adrenaline that flow to the heart when a person is startled, spikes that could set off an irregular beating pattern, Levine said. A defibrillator, implanted through surgery, jump-starts a stopped heart by applying a brief electric shock.
Although they are asymptomatic, Tom and Brian Sutch, along with their sister Karen, had defibrillators implanted.
Bill Sutch, the first in the family to discover he had Long QT Syndrome, praised Tom Sutch’s maturity in taking on the film project.
“We talked about things that were never discussed between us before,” Bill Sutch said. Kim Sutch Halpin, Tom Sutch’s mother, said she was happy her son was working on a project so close to the family.
“I don’t really sit down and look at old pictures of my husband because it’s really sad,” said Sutch Halpin, 48. “But hearing Tommy narrating with the pictures in the background made me realize how grown up he is. It just made me feel good.”
The Sutch family is not the only one on Long Island to suffer tragedy from Long QT Syndrome. In 2004, former Hofstra wrestling coach Tom Ryan’s 5-year-old son, Teague, died after passing out while playing. Doctors blamed Long QT Syndrome.
The death prompted Rep. Carolyn McCarthy (D-Mineo- la) to introduce Teague’s Act to Congress in March 2005. The bill, which never reached the House floor for a vote, was an effort to regularly screen children for sudden cardiac arrhythmia syndromes, like Long QT.
Sutch’s 40-minute documentary, which combines black-and-white archival footage with sit-down interviews, is another effort to bring Long QT to the forefront. The film includes some poignant moments, such as shots of half a dozen family members’ scars from defibrillator implantation surgery and Kim Sutch Hapin’s detailed retelling of the day her husband died.
Debra Markowitz, director of the Nassau County Film Office, helped select the film for the Expo.
“It’s a condition that nobody would think about,” she said. “It makes you wonder about all the other things out there that we don’t know about.”
Tom Sutch recognized the benefits to showing his film locally. He said he told family and friends to get to Bellmore Movies early for the 3 p.m. Expo screening on July 12 because the show might sell out.
“When I found it was going to premiere on Long Island, I thought, ‘That’s perfect,’ ” he said. “I couldn’t have asked for anything better.”
NEWSDAY
SUNDAY, JUNE 24, 2007