Orchestra leaders generally are not regarded as life-savers.
But if Chanin Mast had had one, she might be alive today.
Her parents firmly believe this, and so they have, in essence, hired a conductor and a small symphony at Morristown Medical Center to ensure that other families never experience a loss like theirs.
The “conductor” is Dr. Martin Maron, a cardiologist affliated with Tufts University near Boston, who will lead a team of specialists and counselors at the new Chanin T. Mast Center for Hypertrophic Cardiomyopathy, which was dedicated in Morristown on Wednesday.
Hypertrophic Cardiomyopathy (HCM) is an abnormal thickening of the heart muscle that forces the heart to work harder. It affects roughly one in 500 people and is the leading cause of sudden cardiac arrest in children, teens and young adults; the genetic condition claimed Chanin’s life in 1999.
At that time, said her father, Bob Mast, there was no orchestrated effort to guide treatment for Chanin (pronounced “Shannon”) or counsel the family.
If such a system were in place, he contends, the family would have learned about an implantable defibrillator, a device that might have made all the difference.
‘THIS IS A BASKET’
“There was no coordinated treatment. Everyone had their own niche,” said Bob, a former Morristown councilman.
He described a frustrating medical odyssey, strewn with more questions than answers, which began with his daughter’s diagnosis in 1987, two years after her graduation from Morristown High School.
Bob and his wife Terry envision the new center as a model of treatment, clinical research and counseling for HCM patients and their families, a place where the latest medications, implantable devices and surgical techniques can be brought to bear.
“This is a basket. The patient comes here and gets full, encompassing treatment,” said Bob, who has worked in investment management. The Masts were joined at Wednesday’s ribbon-cutting by Chanin’s sister, Megan Holken.
“It really is an enormously generous gift for the Mast family that will directly effect improvement of lives of patients with this disease, now and long into the future,” said Dr. Maron, a leading expert on HCM who followed in the footsteps of his father, cardiologist Barry Maron.
Dr. Linda Gillam, chair of cardiovascular medicine at the hospital’s Gagnon Cardiovascular Institute, knew Barry Maron and reached out to him when the Masts expressed interest in creating an HCM center. The father recommended his son and everyone was thrilled.
“They’re the gold standard,” Bob Mast said of the Marons.
The amount of the Masts’ donation to the hospital was not disclosed.
Dr. Gillam said she was especially excited about involving the hospital’s social workers, to help patients and families cope with a tough situation.
“This will be in many ways a one-of-a-kind program,” she said.
‘HEART OF GOLD”
Community outreach also will be part of the Mast Center’s mission, Martin Maron added. HCM causes sudden deaths of athletes, he said, yet the condition is devilishly difficult to diagnose. Symptoms often mimic those of asthma and other afflictions, and they may not appear until adolescence or later, if at all.
The only sure way to diagnose HCM is via ultrasound- or magnetic resonance imaging, Dr. Maron said. Screening is controversial in scholastic and medical circles, however. America has millions of athletes and the tests are costly. About 70 athletes nationwide die suddenly every year, from a variety of causes, the doctor said.
“It’s an insidious condition. It can be very hidden,” said Bob, who also lost a son, in a car accident a year before Chanin’s diagnosis.
Chanin’s initial symptoms were a loss of stamina and trouble sleeping, her father said.
The Chanin T. Mast Center includes a pair of examination rooms, a reception area and conference space. The first thing patients will see as they enter is a photo of a brunette with a warm, welcoming smile.
“Chanin had a heart of gold,” along with a vibrant and uncomplaining nature, her father said.
She insisted on attending her graduation at Douglas College, only weeks after open-heart surgery. Inducted into the International Honor Society in Economics, she was completing a master’s degree in business at Fairleigh Dickinson University and working for the Superior Court in Morristown, as an assistant administrator, when she died of a ventricular fibrillation.
Chanin’s friends and co-workers had been unaware of the severity of her condition, Bob said.
“She never spoke of it. She really never wanted to be a victim…to be held back by her condition. Truly, a brave little girl.”