Family’s love keep them going

BY LAURA COLVIN
Clarkston News Staff Writer
As Jordan Cox jumped from the shower one evening last May a jolt of electricity shot through his body for what would be the first of many times.
Terrified by the searing pain, he opened the bathroom door to find his parents.
Jordan’s mom, Kila, recalls the ashen face and horse words of her 11-year-old son.
“I got shocked,” he said.
And then it happened a second time, and Tim, Jordan’s dad, leapt from the couch to hold the boy tight in his arms until it passed.
The pain swept through Jordan a third time, then a fourth, a fifth, and a sixth time as Kila grabbed phone and punched 911.
Jordan thought he was going to die. It just wouldn’t stop. The pain came a seventh time, and then an eighth.
When it was finally over, the device implanted in Jordan’s chest, the device responsible for keeping him alive, had misfired and shocked the boy an agonizing 20 times in 12 long minutes.
Some five months later, the memory continues to haunt the family.
“It was like a huge boulder fell on my chest,” said Jordan. “From a thousand feet up.”
Recalling the thoughts that stormed through his mind as he held his son those 12 minutes, Tim gets choked up. He shrugs, removes his glasses and wipes at his eyes. He can’t say anything. It’s just too much.
Kila Cox didn’t see any reason for her husband to miss work the day she took the kids to see the cardiologist her family doctor recommended.
She was certain the kids probably had the same syndrome her father and brother had, and while they both wore pacemakers, it wasn’t anything they couldn’t live with.
When the doctor came back and told Kila that then 7-year-old Paige was fine, and didn’t need to return right away, she breathed a sigh of relief.
But then he sat there, just looking at her, she said, for what seemed the longest time.
Finally he said it: Kila was lucky that her son Jordan, who was 10 at the time, was still alive. If something wasn’t done soon, the doctor said, Jordan could die. He could go into cardiac arrest, faint, and be gone. Just like that.
The news came as a shock to the family, and it wouldn’t be the last.
The cardiologist diagnosed Jordan with Long QT Syndrome type 3, or LQT3, a rare genetic defect defined by the Mayo Clinic as a disorder of the heart’s electrical system that leaves the affected person vulnerable to fast, chaotic heartbeats that may lead to fainting, cardiac arrest and possibly sudden death.
Of the eight known variations of the condition, Jordan’s type 3 is the most rare — and the most deadly.
“Our whole world turned upside down that day,” Kila said. “We’ll never know normal again.”
In the weeks and months ahead, the family would trade baseball and basketball games for an endless parade of doctor appointments.
In addition to finding the best treatment for Jordan, the family also had other questions. Big questions. Like, where did this disorder come from?
The only way to find answers was through expensive DNA testing — which isn’t covered in the family’s insurance plan.
And then the next shock: Tim, not Kila, as they’d assumed, had passed on the gene to both Jordan and his sister, Paige. Kila was the only one in the family without LQT3. The children would have numerous surgeries between them in the coming months, first to fit each with an implantable cardioverter defibrillator, or ICD, again to fix the device. The ICD is responsible for restarting a heart that has stopped beating, the same device that accidentally shocked Jordan 20 times in those long 12 minutes, the same device that accidentally shocked Paige, too, while she slept in bed with her mom.
Mostly, Paige covers her ears when anyone mentions the incident these days.
“Mom’s whole bed shook,” she said. “It woke her up.”
Like the rare disorder, such misfiring by the ICDs are also said to happen very infrequently.
“We haven’t had the best of luck,” said Kila. “We were told that the shocking was unlikely to happen, especially to both of them.”
As it to continue a streak of bad luck, nurses came out to tell Tim and Kila that Jordan had flat lined during the surgery to repair his ICD and prevent further shocks. His heart had stopped for 7 seconds.
“I never prayed so hard in my life,” said Kila.
Perhaps her prayers were heard — Jordan came through it fine, and has returned to the pitchers mound for his team. Paige is doing well, too. She frequently checks to make sure her hair is still beautiful, and she loves to model her pretty dresses.
But both kids take daily medications and now carry a special magnet to shut down the ICD should it misfire. Both wear a Medic Alert bracelet, and the family has installed a 911 beacon light outside their home.
Things might never be exactly perfect, but Jordan and Paige are finally getting back to doing the things kids do — under the watchful eye of the two people who love them most.

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