- Sammy Berko, 16, went into cardiac arrest while rock climbing with friends.
- The same condition that caused this likely killed his little brother, Frankie, three years ago.
In January, Jennifer and Craig Berko dropped their 16-year-old, Sammy, off to go rock climbing with his friends. Just a short while later, Jennifer got a phone call from the rock-climbing gym: Sammy was unresponsive and people were giving him CPR.
Craig, a former firefighter, knew that if Sammy was getting CPR, it meant his heart had stopped. The realization would have been terrifying for any parent but was like a repeat nightmare for the Berkos. Their 10-year-old son, Frankie, had died three years earlier when his heart stopped after a minor epileptic seizure.
When the Berkos arrived at the gym, they watched with horror while EMTs tried to stabilize Sammy. They would get a heartbeat, then lose it. The first responders transported Sammy to the hospital, working on him the whole time until doctors in the emergency room took over. Sammy had been getting CPR for about 90 minutes, and Craig knew what that meant.
"My hopes were that my son would all of a sudden wake up like in the movies," he told Insider. "But in my head, it was exactly what we went through with our other son. I didn't have a good feeling about it. It had been too long."
Eventually, doctors called it. For the second time, doctors told the Berkos their child was dead.
Sammy started moving, but doctors were still worried
The hospital staff left Jennifer and Craig to say goodbye after Sammy was formally pronounced dead.
"I was just staring at his face," Craig said. "I couldn't believe it was happening again."
But then he noticed Sammy move. At first, Craig thought it was wishful thinking, but when he saw Sammy struggle for breath, he screamed for a doctor. The doctor said it was likely reflexive, but when he entered the room and looked at Sammy, he responded differently.
"If it hadn't been such a horrific situation, it would have been almost comical to hear the attending scream, 'Oh, shit,'" Jennifer said. "The whole team came running back in and started working on him again."
Doctors transferred Sammy to the pediatric intensive-care unit but told the Berkos that he was not out of the woods. His organs were failing, and they couldn't find any brain activity. Yet Jennifer noticed that Sammy's eye would move when she talked to him. She put on Sammy's favorite playlist — he's a drummer — and talked to her son.
"I looked at Sammy and said, 'They're telling me you're not going to make it. You've already proven them wrong once. I know you can do it again,'" she said.
A while later, Sammy opened his eyes.
"From that moment on, the attitude of the whole environment changed for everyone," Craig said. "Instead of a patient they were going to lose, it became, 'Holy cow, we're going to save this kid.'"
Sammy lost weeks of memory
Sammy spent two weeks in the pediatric intensive-care unit but doesn't remember any of it. His last memory was signing the safety-waiver forms for rock climbing the night before his cardiac arrest. Weeks later, he went to a transitional intensive-care unit.
Then he started the long road to recovery.
"I had no movement from the belly button down and reduced feeling," Sammy said. "Slowly, movement started to come back."
After four weeks of inpatient rehab, Sammy is still unable to walk on his own, but he's optimistic.
"I'm hopeful for the future and working to get as close back to normal as possible," he said.
That's a tall order, according to Dr. Stacey Hall, a clinical assistant professor of pediatric rehabilitation medicine at McGovern Medical School at UTHealth Houston and is also the medical director of Pediatric Rehabilitation Program at TIRR Memorial Hermann and Sammy's doctor. Sammy experienced cardiac arrest, a brain injury, multiple strokes, and a spinal-cord injury, she said.
"Sammy is going to have a great life and do wonderful things in this world," Hall said. "It is not clear if he will be able to walk yet outside of therapy. He is doing amazing, though."
Sammy's story is hard to explain medically, she added.
"He did literally go from being dead to coming back to life," she said. "I have never seen it before."
Sammy's accident helped explain Frankie's death
After the accident, Sammy's friends told Jennifer and Craig what they'd seen at the rock-climbing gym. Sammy had reached the top of a climb and rang the bell, then suddenly went limp. At first, they thought he was joking.
Hearing that, Jennifer thought back to Frankie's death. While he had a mild seizure from his epilepsy, it never made sense to her why his heart stopped. Frankie's cause of death was ruled sudden unexpected death of epilepsy.
Now, with both incidents, doctors suspected there was more going on. The whole family was tested for rare genetic diseases — even Frankie, via a sample of his DNA in the medical system.
The results explained everything: Sammy, Frankie, and Jennifer were all diagnosed with catecholaminergic polymorphic ventricular tachycardia, a rare condition that causes irregular heart rhythms in response to adrenaline surges — like during Sammy's climb or Frankie's seizure. Now Sammy and Jennifer are being treated, but the Berkos wonder how life might be different if babies were tested for conditions like CPVT as part of the newborn screening.
After Frankie died, Sammy told his parents that their family was now a triangle. The Berkos are forever grateful that the triangle remains intact — at least partly because of Sammy's determination.
"We truly believe he survived because of his zest for life," Craig said. "He loves life."