Every morning I am greeted with the same bittersweet reality. Bitter is just a taste of the eternal emotion of losing a child. Sweet is the ever-present gratefulness that one of our children came back to life after being pronounced dead.

We choose to share our story with the world to create change and awareness. At a time when our world is divided, my boys’ life lessons of compassion, love, and perseverance are what our world needs most to focus on our similarities rather than our differences. It’s an opportunity to lead with love, create awareness, and save lives.

On January 7, 2023, our healthy sixteen-year-old, Sammy, asked to meet a couple of friends at an indoor rock-climbing gym. We drove him and even went inside with him to review safety measures with the staff. We were protective before we lost our ten-year-old and now we’re over-protective. Once the staff reviewed their safety precautions, we left and planned to return at the end of the session. We had just pulled up to a car dealership where we planned to search for a car to surprise Sammy who was taking his driving test in just a couple of days. Before we even got in the door, a call came from an employee at the gym. Sammy seemed to have passed out. As we raced up the highway back to the gym, we slowly got more information from the employee who we kept on the phone.  Sammy was receiving CPR. Our heads were spinning. How could this be happening again? With our stomachs clenched, hearts pounding, and fear running through our bodies we ran into the gym. Sammy was unresponsive and receiving CPR from emergency workers. According to the gym employees and Sammy’s friends, he had not fallen. He volunteered to go first to climb and when he made it to the top of the wall and rang the bell, his body went limp. He was carefully lowered to the ground when a radiologist, who was at the gym attending a birthday party with his daughter, jumped into action and gave Sammy CPR until the authorities arrived.  The emergency workers continuously performed CPR during the ambulance ride to Texas Children’s Hospital. They would get a pulse here and there and quickly lose it. At the hospital, more CPR was administered. In all, approximately over two hours of CPR was given before we heard the words we never thought we’d hear again, “Mr. and Mrs. Berko, I’m sorry. We’ve done everything we can, but your son is gone. We’ll clear the room and give you some time to say goodbye.” My husband, Craig, and I stood on either side of our first-born child’s body. We told him how proud we are of him, how much joy he brought us and all who know him. Next, I said a prayer. Suddenly, Craig yelled out, “He moved!” The doctor poked his head in and explained it was likely just a reflex. Nearly five minutes after they called the time of death, I noticed Sammy’s neck turning purple and pulsating! “He has a heartbeat!” yelled Craig. The doctor and his team came running in with disbelief and immediately began stabilizing Sammy. Once he was ready to go to the pediatric intensive care unit, the doctor, a seasoned professional at one of the world’s best children’s hospitals, said he had never seen anything like that before. He had no scientific explanation. It was simply miraculous, but that wouldn’t be the only miracle in Sammy’s story.

The next morning, the attending doctor asked to speak with Craig and me outside Sammy’s room. He explained that Sammy’s organs were shutting down and aside from reactive pupils Sammy had no brain activity. The doctor calmly explained that Sammy likely wouldn’t make it through the day, but if he did, he’d probably be brain dead. The attending was simply trying to set our expectations and prepare us for losing another son; our only son left clinging onto life. I wiped my tears and walked back into the hospital room with Craig. We flanked ourselves on either side of Sammy’s head and I said, “Sammy, I know you can hear me. The doctor is saying you won’t make it through the day, but I don’t believe him. You already defied the odds and came back to life. I know you will do it again.”

Sammy is a musician with his main instrument being drums. Music is like breathing to Sammy. If he’s not listening to an eclectic mix of songs, then he’s playing them or talking about the bands and the meaning behind the music. Our entire extended family is musical, so it came as no surprise when my sister, a Doctor of Early Childhood Education who wrote her thesis on the connection between music and learning, suggested we grab Sammy’s phone and play his infamous mix. As his phone lay beside his head singing, Craig and I stood at Sammy’s head. Suddenly, Craig said, “He moved his eyes beneath his eyelids!” The doctor rushed in and said that it was likely a reflex. Craig said, “No, I think he’s responding to the sound of my wife’s voice. Jen, keep talking to him!” As I kept encouraging Sammy, suddenly his eyes opened! My husband screamed for the doctor who came into the room nearly in tears and with utter disbelief. Sammy was not only awake but alert. He was even answering yes and no questions by blinking once for yes and twice for no. At this point he was still intubated, on dialysis, and hooked up to a ton of machines, but he was alive and not brain dead! That was miracle number two.

We have answers which is comforting, but our grief is eternal. That’s what is to lose a child.

A genetics team at Texas Children’s Hospital ran a rapid DNA sequencing test (a five day turn around) on our entire immediate family, including Frankie. You see, just before Frankie passed, he was joining a neurologic DNA study after being diagnosed with epilepsy. Somehow, his genetic material had been saved and was still available. The genetics team was certain both boys have/had a rare genetic heart condition, but they didn’t yet know which one. They were confident because during the cardiac arrest, Sammy’s heart went into ventricular tachycardia which is a rare rhythm for a child or teen. Five days after they swabbed the inside of our cheeks, the whole genetics team sat us down in a private room and I knew they had something major to share. With a shiver down my spine, I heard them say that Sammy, Frankie, and I all have Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT). According to the SADS website, “CPVT is caused by abnormalities in the way the heart muscle cells handle calcium. This results in heart rhythm problems that can cause fainting or sudden death. Events usually occur with exercise or during stress.” In our family’s case, it seems an adrenaline rush due to fear seems to set off CPVT symptoms like fainting, seizures, and cardiac arrest. It turns out that Frankie’s epilepsy was not a final diagnosis as we were told; epilepsy was a symptom of a larger diagnosis of CPVT. Our Frankie, a ten-year-old sensitive, loving, funny, empathetic, giving, wise soul did not survive his fourth seizure. After three and half years of wondering, questioning, researching, and grieving, we now know why his heart stopped during the seizure. We have answers which is comforting, but our grief is eternal. That’s what is to lose a child. Frankie may be out of site, but we believe he is ever present. We’ve received many undeniable and mind-blowing signs from Frankie, so we know he is with us beyond the veil.

When Sammy opened his eyes for the first time, I asked him if he had seen Frankie. Before I explain what happened next, know that at sixteen-years-old Sammy was not at all a believer in people’s souls living on. He respectfully would listen to my thoughts and experiences, but he believed none of it and was adamant about it. When he woke up and I asked him if he saw Frankie he nodded yes emphatically. I thought I would pass out. A nod was as good as a yes since Sammy still had a breathing tube down his throat! Sammy has also always had an insatiable zest for life that has been ever present since birth. As my husband, Craig, and I say, if anyone has a love of life so strong, they could come back from death, it’s Sammy. Miracle number three.

I like to think of the fourth miracle as a grouping. By living in Houston and using the Texas Medical Center, a world-renowned medical corridor, we were able to work with one of the only pediatric teams that specialize in rare genetic heart conditions. On that team is Sammy’s main cardiologist/electro physicist and Director of the Genetics Arrythmia Program at Texas Children’s Hospital, Dr. Christina Miyake. She is one of a few in the world who specialize in treating CPVT in children and she was right at our fingertips. Her attention to detail and commitment to her patients and their families stretches well beyond the imagination. She pours herself into every aspect from research to teaching to publishing new findings and forming bonds with her patients like Sammy. She placed Sammy on beta blocker Nadolol as well as calcium blocker flecainide. We were also graced by the presence of one of the only cardio thoracic pediatric surgeons who can successfully perform a sympathectomy and a sub abdominal ICD like he did on Sammy. Sammy was an extraordinary case especially because of the family history with Frankie. Craig and I researched, spoke to multiple doctors, the cardiology team consulted Dr. Michael Ackerman of the Mayo Clinic and SADS board president, and eventually we asked Dr. Miyake and the entire team if we could take every precaution even though they usually begin with medication and then do either a sympathectomy or an ICD. They agreed and we felt good about advocating for our unique case and kid. Dr. Neil Cambronero was there just when we needed him with his outstanding skill in addition to being a fabulous person. Between Texas Children’s Hospital and Memorial Hermann TIRR, Sammy has worked with some of the most specialized and caring physical therapists, occupational therapists, speech therapists, social workers, music therapists, and neuropsychologists in the world. In a few months, they brought Sammy from barely being able to sit up in bed to being fully independent while using his wheelchair or ambulating with braces and a walker. These therapists became more than Sammy’s medical professionals; they became his and our friends.

In classic Sammy form, he chooses to focus on the positive and says of this journey, “I’m grateful I’m me and that I regained full brain function. I’m here and I all I can do is move forward.”

Miracle number five and six. Sammy received CPR for an extraordinary amount of time, which caused a lack of oxygen to Sammy’s spine and brain (anoxic injuries). The doctors scanned Sammy’s brain and what they saw was unbelievable to them. They expected a large brain injury, but instead found small infarctions throughout his brain. These small infarctions are mostly compensated in other areas of the brain that weren’t damaged. The worst of the damage was in an area that controls short term memories. Sammy could hardly remember something for thirty seconds in the beginning. At that time, we were told Sammy would be on dialysis for weeks to months and he would be in the PICU all that time. Two weeks after he entered the PICU, he was leaving to transfer to the Transitional ICU (TICU). A couple of weeks after that, he was off dialysis and was remembering for hours at a time which quickly turned to a day at a time.  Today, his short-term memory is considered average for a sixteen-year-old. He was well above average before the injury, but he is still in recovery mode and has a chance of a full neurological recovery. When it comes to the ischemic injury in his spine, he is an incomplete paraplegic. He has feeling from the waist down and function of most of the muscles, but they are so weak that his legs aren’t fully functional. He’s in a wheelchair and ambulates very short distances with leg braces and a walker. He’s currently in intensive outpatient therapy after completing inpatient therapies at Texas Children’s Hospital, Memorial Hermann TIRR Rehab, and graduating from TIRR’s outpatient Challenge Program. We’ve been told the first year to two years of intensive rehabilitation therapies are essential in getting back as much function as he possibly can. In classic Sammy form, he chooses to focus on the positive and says of this journey, “I’m grateful I’m me and that I regained full brain function. I’m here and I all I can do is move forward.”

Sammy has done more than move forward. He has poured himself into therapies while simultaneously starting back at school after a six-month break. He’s nearly made up the semester he lost and is taking almost all Advanced Placement classes including pre-calculus and physics. He continues to play in the school marching band with teachers and students who act more like family than anything. They were marching down our street when Sammy came home from the hospital and they’ve held multiple fundraisers for Sammy’s medical expenses, not to mention the numerous visits they made to the hospitals baring gifts. If the people you surround yourself with says anything about you, then Sammy is surrounded by multiple groups of friends, family, and community showing what an impact he has on those around him. They seem to be inspired by his zest for life just as we are. Sammy can even be found on the basketball court or football field in his wheelchair competing against his friends who complain when he still sinks a shot from his wheelchair. CPVT hasn’t stopped Sammy, thanks to advances in science made by detail oriented, brilliant doctors like Christina Miyake paired with Sammy’s unique ability to latch onto the positive and push forward living and loving life to the fullest.