Houston-area family loses two boys, but one is revived from death

MISSOURI CITY, Texas - A teenager from Missouri City died at a local rock climbing gym, but not from an accident. After two hours of CPR, doctors finally pronounced Sammy Berko dead.

"He climbed to the top of the wall, rang the bell, as we were told, and then his body went limp, and it looked like he was either playing around or passed out. They weren't quite sure and when they realized he was unresponsive, they lowered him slowly," explains Sammy's mother, Jennifer.

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They would soon find out that 16-year-old Sammy had gone into cardiac arrest, his heart suddenly stopped. Workers at the gym, then paramedics, then doctors all performed CPR for two hours.

"They looked at us and said, 'I'm so sorry, but he's gone,'" says an emotional Jennifer.

Doctors left his devastated parents to say their goodbyes. Five minutes later: "I started talking to him, just telling him how much I love him and sorry that we didn't know how to save him. Suddenly, as I started praying, my husband said, 'oh my gosh, he's moving,'" exclaims Jennifer.

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Their miracle child. He pulled through and actually overcame death. The medical team came racing back in, when the couple started yelling that he was alive!

"These are professionals who have been doing this their entire lives, who have seen the worst of the worst. Each and every one of them afterward came to us and said that they have never seen anything like this before. Ever. Never had they ever pronounced somebody and suddenly they came back five minutes later. That feeling of seeing his heartbeat, there are no words for that. There are no words. We just stood there. I mean, grateful is the biggest understatement ever to know that he might make it," explains Jennifer.

Because Sammy went so long without oxygen to his brain, everyone expected a catastrophic brain injury. Instead, only short-term memory loss. That has gotten better, but at first, it was incredibly challenging for his family to have to re-tell Sammy over and over again and experience his emotions at the news over and over again.

"I don't remember anything about the day it happened. The last thing I remember is the night before we had to sign waivers online (for the rock climbing gym), and then I woke up, not even in the pediatric ICU. I woke up in the transitional ICU and that's the first thing I remember. Then I remember my dad telling me, this is what happened and you better remember this time, because he said it so many times," laughs Sammy.

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That's because he could only remember seconds at a time and that lasted for several weeks.

"You could see the reset in his eyes. We kept telling him the story so many times that we eventually wrote it out and we just gave it to him on a piece of paper, and every time he asked, we just pointed at the piece of paper. He asked them every single time, in the same order, the same exact questions and it was every two minutes," explains Sammy's dad, Craig.

Sammy's mother distinctly remembers those five questions.

 "What happened, where am I, why, how, and why can't I feel my legs," recalls Jennifer.

Now Sammy is working hard to recover the strength in his legs, after spending a month recovering in the hospital. The last two months, he has been undergoing inpatient rehabilitation at TIRR Memorial Hermann, under the care of Dr. Stacey Hall.

"I was very struck by his story. It's very gripping and very unusual. That only young man you know, who had this Catecholaminergic polymorphic ventricular tachycardia (CPVT), which is a super rare genetic disorder that affects his heart," explains Dr. Hall. She's the Medical Director of the Pediatric Rehabilitation Program at TIRR Memorial Hermann and Clinical Assistant Professor of Pediatric Rehabilitation Medicine at UTHealth Houston's McGovern Medical School.

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She says she is in awe of how well he's doing!

"We do see kids all the time here who have had CPR, but with very prolonged CPR, we typically see very severe global anoxic brain injury, so to me, he is a literal miracle," exclaims Dr. Hall.

Her team at TIRR Memorial Hermann is helping Sammy overcome the ischemic spine injury he suffered during cardiac arrest.

"He did have an upper thoracic spinal cord injury, so he is working on strengthening his core, strengthening his legs. He's working on everyday things like transferring, putting clothes on, he is working on walking, and he truly has made remarkable progress," states Dr. Hall. 

"I knew it would be a weird, crazy experience learning to walk again and working on strength without using my legs to be able to balance me. It has just been an amazing experience here actually, like I've noticed that I'm better every day! I'm doing something new every single day," says a smiling and enthusiastic Sammy.

The best part of therapy for this musician is how therapists help him play instruments – everything from the drums to a keyboard – during therapy to help strengthen him, plus redirect his attention from pain.

While this is one drastic situation and a lot for one family to take, their story goes much deeper and more painful than this. That's because Jennifer and Craig lost their beloved younger son, Frankie, three years ago, when he was Sammy's age now. Frankie had been suffering from dramatic seizures that led to multiple traumatic brain injuries, including a seizure he suffered at the top of a high diving board that led to him falling ten feet to the ground, on his head. He survived that and his family was so very proud of him for being such a strong young man and dealing with his condition. Then, Frankie had his last seizure and lost his life. His father, a former paramedic, performed quality CPR until paramedics arrived, but he couldn't be revived.

Now fast-forward three years, Sammy's diagnosis clears-up unanswered questions about his little brother and could potentially save their mother's life. Doctors kept some of Frankie's DNA for further studies and now they know he died from the same thing that almost took Sammy's life.

"The testing came back and my husband was cleared, but my two sons and I have a genetic mutation that apparently started with me. I never knew I had this," explains Jennifer.

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Sammy underwent a procedure to help resolve the problem, and he and his mom will be on several medications for life to help prevent cardiac arrest. While it happened to both boys near their sixteenth birthdays, Jennifer has never had a symptom but is being closely monitored.

She shares how horrendous it was to go through this not once, but twice.

"The feeling when we got to the ER was the most horrific rendition of Groundhog's Day. We just couldn't believe how my husband kept saying it out loud or even know if he remembers because we were so out of our minds. But how is this happening again? Sammy has no medical history as far as we know, medications, illness, nothing, so it was such a shock. We thought we had already been through the worst of the worst. We had been shopping for a car for Frankie's birthday when we lost him and now we were two years away from Sammy's graduation and getting ready to buy him a car for his birthday as a surprise, and and then this happened. I guess it's just shock and a feeling like you're reliving the most horrific time of your life all over again," says Jennifer.

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Now, as the Berko's move forward, they're putting plans in place to prepare their home for Sammy's wheelchair.

"Things most people never understand is things that we take for granted on a daily basis. With a spine injury means needing help with things like brushing your teeth, washing your face, going to the bathroom, getting around the house. We are making massive changes to our house to accommodate his wheelchair. We've learned a lot of things since being here (TIRR) that we didn't even know about being paralyzed."

The family is ready for the challenge and so very thankful their darling Sammy pulled through!

"My husband and I have said over and over again, only Sammy would come back from the dead because this child was born, bouncing off the walls, waking up in the morning as a toddler, going, 'Good morning! What will we do with our day, Mom? Where are we going to go? What are we going to do?' I mean, nobody loves life more than Sammy does, so I think he pushed himself, he willed himself to survive and recover," says Sammy's relieved mother.

Jennifer says she is hoping for a call to action for more genetic testing at birth to let people know about medical problems, like the ones she and her sons were diagnosed with later in life. So far, their medical insurance has helped cover the costs, but it only allows a few more therapy sessions, and Sammy is expected to need years of therapy, so the family has set up a GoFundMe account. You can find out more through their Caring Bridge: https://www.caringbridge.org/visit/sammyberko

For more info on the rehab facility helping Sammy, visit https://memorialhermann.org/services/specialties/tirr