#MollysKids: Horror, fear, and miraculous wrapped in one. Meet EJ Lyles.
CHARLOTTE, N.C. (WBTV) - Monday marked 100 days that 5-year-old EJ Lyles has been hospitalized.
His family’s goal was to be home by Thanksgiving. They found out on that 100th day, they won’t make that goal.
Candidly, I’ve been waiting to write about EJ until Thanksgiving. The thought was they’d get the green light to return to their home in Greenville, and this could be a nice story about a family getting good news around the holidays. Only, they can’t be home for Thanksgiving because EJ, whose formal name is Elliott, isn’t yet strong enough. Instead, he and his family will eat turkey inside Duke Children’s Hospital.
“But we’ll be together,” mom Sophia Lyles told me over the phone. “We will all four be together. After all we’ve been through, we know that counts for a lot.”
Before reading any further, take a breath. It’s quite a story ahead. But it’s the Good, the Bad and the Always Real here… whether the stories work out the way you want... and EJ’s remarkable journey should be shared.
It began August 3rd. The family of four—Sophia, her husband Michael, 5-year-old EJ, and 9-month-old Josie—were on their way to Atlanta. They’d gotten COVID tested two days before leaving on their trip; all were negative. (That fact will play a role as you keep going.) With kids, Sophia says, it was easier to drive overnight. Things had gone well until they were ten minutes from the hotel. It was at 4am and out of nowhere, Michael got a nosebleed.
“It just started bleeding,” Sophia said. “He asked if I could finish driving, so he could find napkins and clean up. He pulled over to the side of the road. I got out and was walking around behind our car when I saw headlights. They were bright and coming right at me. Suddenly I was hit head-on by another vehicle. After hitting me, that car hit our family’s car. I only remember pieces after that.”
Sophia later found out she was flung into the air, into the lane of traffic. She suffered a broken sternum, nine broken ribs, a broken wrist, and facial scarring that would require plastic surgery (picture below in comments). After the car slammed into Sophia, then their car with Michael and the kids, he checked on them, knew they were alive, then tried to open his door to run and check on his wife. The speeding car was now lodged into Michael’s driver’s side though, trapping him in. He punched out the sunroof, climbed out the top that way, and pulled his wife out of road. Moments later a police officer arrived because, Sophia said, the woman who had hit them, was being chased by police.
“I don’t remember any of that,” she added. “I just remember being put into an ambulance, screaming with pain.”
Sophia was emergency rushed to an Atlanta-area hospital. When she got there, she was, as was standard, tested for COVID.
She tested positive.
“Two days after testing negative, now I was positive,” she said. “They rushed me to ICU, but because I was positive for COVID, Michael couldn’t come see me.”
This meant as Sophia was in ICU, Michael was with the kids in Atlanta, trying to figure out the chaos of what just happened. The next day, as things continued to move fast with Sophia’s injuries, 5-year-old EJ got a fever and stopped eating. Knowing what Michael now knew about Sophia having COVID, he took his son to the hospital in Atlanta.
“They tested EJ for COVID, said he had it, then told Michael to take him home and give him rest and Tylenol,” Sophia said. “My husband now had a sick 5-year-old, a baby girl who had been exclusively breast fed but whose mom was in ICU unable to feed her, and high concerns over me. It was a very difficult time.”
Five days later, Sophia was still hospitalized and EJ still had a fever. But while Sophia was on the road to recovery, EJ still wasn’t eating. He also now wouldn’t walk on his left leg. Sophia says Michael took him back to the hospital. The hospital staff checked him out, and told Michael to take him back home, that he’d be fine.
As days went on, Sophia got better and EJ got worse. Eleven days after the accident, Sophia got out of the hospital. The family got her, and rushed back to their hometown of Greenville… taking EJ straight to the hospital there.
“Instantly, almost instantly, they told us he was really sick,” Sophia said. “They knew the same way we knew.”
Turns out EJ was septic, had endocarditis, MRSA (in his leg), and MISC, which is a rare multi-organ failure system that can happen to children months after a child has COVID. The doctors told the Lyles he needed to go to Duke, and they’d get him there in the next day or two. Only that morning, while at the Greenville hospital, EJ went into cardiac arrest. He was life-flighted to Duke.
“We arrived to Duke on August 20th,” Sophia said. “That started days and days of watching our son not move, not talk, and getting sicker by the day. He needed heart surgery but was too sick to get it done. We were told, directly, he wouldn’t make it through a heart surgery. The first few days were touch-and-go. His kidneys stopped working at one point. He had a stroke, which caused a brain bleed. They told us his lungs weren’t working and that he needed a transplant, but that this facility basically didn’t do transplant for kids like him, so we were just there doing what we could. Hoping. Praying. Watching his organs start to shut down. It got really real, really quickly.”
Things weren’t improving, but time kept going. On September 7th, Sophia and her husband were told EJ wasn’t going to make it through the night.
“It was awful,” Sophia said. “His grandparents rushed to Duke. Nurses were making handprint molds, fingerprint molds, everything you know they do when children are going to die. That night, doctors asked our family to meet. They told us they’d realized EJ’s bowel was actually perforated, and it had created a hole in his intestine and was leaking toxins into his body. They said he wouldn’t live two days. They said he needed a surgery but that he was too critically-ill to be a candidate for the surgery he needed to fix his bowels. They asked us to sign a DNR. We couldn’t. We just couldn’t. We understood what it meant and even if doctors thought he needed it, we couldn’t sign it. We didn’t know what to do. Out of not knowing anything else, we started a Facebook page asking people to pray.”
That page is EJstrong.
Then, Michael and Sophia did what they were told to do: Wait.
EJ—said to only make two days without that surgery—lasted a week.
“The surgeon came into us suddenly and said, ‘He will die without the surgery. He also might die in the surgery. It’s an exploratory surgery because we don’t even know at this point what we’ll find if we can do it. But if you want us to try this surgery—we will. You have five minutes to decide because the fact he’s lived this long is a miracle and if we’re going to do it, we’re going to do it right now.”
Sophia and Michael said yes. The surgeon rushed their little boy back to the operating table.
“What they found was infection, and organs shutting down,” Sophia said. “EJ lost his gall bladder in that surgery and half his colon—he now has an ostomy bag—but that’s okay. He can live without those things. We still have him.”
They did still have him. EJ made it through the surgery, which was remarkable in itself, but that didn’t mean all was okay. He was still in a coma. Sophia and Michael hadn’t heard their son’s voice for weeks. He also still needed heart surgery because doctors were afraid this infection was also trying to eat away at his heart.
“The best way I can describe it is that we watched our boy’s body disintegrate, then come back slowly,” Sophia said. “He did get the heart surgery, and afterwards the surgeon told us he’d never seen anything like it. The doctor said he was, ‘definitely a special child’.” She laughed through the phone. “The doctor is right on that point. He is. But we already knew that.”
EJ was in ICU up until last week, where got upgraded to a step-down unit. Up until the past two weeks, EJ was still very sick, his mom says, but he is gradually getting better. He’s walking now, and talking again. (When Sophia and I were on the phone Monday night, I could hear him happily asking her questions in the background.) He’s also eating real food, not through a feeding tube. Everyday his parents see more healing.
“We are holding on,” Sophia said. “After so much happened, it felt like we were barely hanging on, but now EJ is doing great and getting stronger by the day. I’m also healing as well. After being in hotels for three months, we are worn out, but we push through—our whole family does—everyday.”
Sophia says she and Michael are standing in their faith.
“We trusted even after they said there was nothing more they could do,” she said. “Yet here we are 100 days of being in hospitals with our son, our son who has to date had six procedures they said he’d never have. As we give thanks this week, we know health is a top priority. We wish we’d be home this Thursday—and were really bummed when we were told we couldn’t yet leave—but hopefully this can be a reminder to parents to be grateful for your child’s health.”
“Let it also be a lesson to parents that doctors will give you their best recommendations for your children… but stick to your gut. You know your child best.”
Beautiful reminder, Sophia.
Thank you for sharing your son, and your family, with us.
And, you’re right. It is a week to give thanks. Turkey in the hospital might not be quite as good… but baby steps. It’s all in perspective, as you said. Keep inching forward.
Welcome, EJ, you truly amazing boy, to #MollysKids.
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