May 10 started like any other day for Laura Machnik, who said goodbye to her 18-year-old son JJ before leaving for work. He was going to work at a friend’s house in the morning, and after he arrived at the office, Machnik confirmed that he had arrived there safely.
Just a few minutes later, her phone rang. It was the mother of JJ’s friend visiting, calling with the news that Machnik had been dreading for years.
At 14, JJ was diagnosed with hypertrophic cardiomyopathy, a genetic heart disorder that can cause sudden cardiac arrest. He was an active athlete and never had any other symptoms of the disease, such as shortness of breath or chest pain. But shortly after starting training with friends Trevor Hodgins, 14, and Giovanni Scafidi, 18, his heart stopped.
“(He) called me and said, ‘You have to get to my house asap, JJ passed out on the treadmill,'” Machnik told CBS News. “All I said was, ‘Does he have a pulse?’ When I walked out of the office … knowing what had happened, I was just like, ‘Okay, this is real.'”
As Machnik drove away, Hodgins and Scafidi jumped into action, providing CPR and calling 911. When first responders arrived, Hodgins and Scafidi told the paramedics about JJ’s diagnosis, so they could treat him immediately. His friends’ quick response and thoughtfulness helped save JJ’s life, the longtime cardiologist said.
“He gave us the best chance to live,” said Dr. Matthew Martinez, a sports cardiologist and hypertrophic cardiomyopathy specialist at Morristown Medical Center in New Jersey. “They told me it was less than a minute before they started CPR. That’s a phrase we really want to hear when we’re looking at how kids are going to do after an event like this.”
What is hypertrophic cardiomyopathy?
Hypertrophic cardiomyopathy is a genetic heart disorder, affecting 1 in 500 people, according to Martinez. This disease causes the heart muscle to become abnormal, which makes the heart less efficient at pumping blood.
There are two subgenres of the disease: obstructive and non-obstructive hypertrophic cardiomyopathy. JJ was diagnosed with non-obstructive hypertrophic cardiomyopathy, which affects approximately one third of all patients. This version of the condition causes the heart’s left ventricle to stiffen, but does not block blood flow like obstructive hypertrophic cardiomyopathy.
Martinez said children are usually tested for the condition if a parent is known to have it — and JJ’s father, Jeff, had been diagnosed with the condition several years earlier. JJ was tested at age 14 after a routine checkup yielded abnormal test results.
Symptoms of hypertrophic cardiomyopathy include chest pain and difficulty breathing, according to the Cleveland Clinic website. Monitoring and treating these conditions is largely about measuring the symptoms and their impact on the patient’s life, Martinez said.
For JJ, an active athlete and teenager, this means checking in every year and carefully considering what sports to play. know what to do if he had a sudden heart attack.
“We’re going to talk about how you can make sure you remember, and your coach remembers, that low risk doesn’t mean no risk,” Martinez said. “We prepare for it, we talk about it CPR with his mother and father. We made sure the coaches knew, the high school knew, and they bought their own automated external defibrillators.
JJ also made sure his friends and colleagues knew how to perform CPR. The training helped keep him alive when he collapsed in May.
“JJ is alive because his teammates acted quickly because we were prepared,” Martinez said.
Treat sudden cardiac arrest
On the way to the hospital, JJ coded twice in the ambulance and had to be resuscitated by paramedics. Once stabilized, he was transferred to Morristown Medical Center. There, he met cardiologist Dr. Admiral Masoumi, and several days of intensive care began.
The situation is “quite complicated,” Masoumi said. His heart, which normally pumps about 70% of a standard human heart functiononly work at about a 20% rate, Martinez said.
JJ was placed in an induced coma, and his body was cooled to preserve as much brain function as possible. Over the next 24 hours, his kidney function also began to decline, and his heart continued to malfunction. This led Masoumi to put JJ on ECMO, or heart-lung machine let his organs rest. All the while, no one knows how JJ’s brain function will be affected, Masoumi said, which makes treatment more complicated.
“We get together, we have an honest conversation with the family, a rough, difficult conversation, saying that if he doesn’t wake up, if the brain doesn’t show signs of recovery, it doesn’t matter. the machine we have, it doesn’t matter if we resuscitate the heart and lungs, unfortunately, our options will be limited,” said Masoumi. Three days after his collapse, on Mother’s Day, the family had a frank conversation about the possibility of a heart transplant if JJ woke up.
“JJ is an envelope pusher,” said his mother. “The night before, the heart transplant was on the table. That’s how we slept. … Then we woke up and the heart started working. JJ way, to hear the worst information can then say ‘Oh wait, just kidding, here I am?’ That’s our son.”
As of the morning of May 14, there were still signs of limited brain function, Masoumi said. But just a few hours later, JJ’s condition improved.
“I really didn’t expect that from 6:30 in the morning until 9 o’clock, they would get excited and start fighting,” Masoumi said. “It is very rewarding to hear that. The rest is easy, because now we are in the game we know. We know the heart. The brain is intact. He follows orders. We know that we will have options for him.”
On May 17, JJ celebrated his 19th birthday by walking and starting physical and occupational therapy. On May 23, he was discharged from the hospital, less than two weeks after being admitted. Now, he has an internal heart defibrillator implanted in his chest, which will hopefully prevent future sudden cardiac arrests, Martinez said.
He will continue to be monitored regularly, Martinez said. Right now, athletics are off the table, but Machnik said JJ has been involved in end-of-the-year activities like prom and senior picnics. On June 20, he walked across the stage at his high school graduation.
Just a few days earlier, he told CBS News that he was looking forward to the day and celebrating how far he had come since his sudden heart attack just a month earlier.
“After it happened, the devastating, it turned out to be the best,” JJ told CBS News.