By Maureen Gilmer, IU Health senior writer, firstname.lastname@example.org
Three-year-old Bryson Crenshaw looks through a camera at a photographer’s picture of a tiny baby and asks a simple question:
“Does he have a lost leg like me?”
It’s enough to stop you in your tracks. The baby is not missing a leg, but Bryson is trying to make sense of his own situation.
The Lafayette boy is recovering at Riley Hospital for Children after nearly losing his life to a deadly infection that strikes without warning.
Necrotizing fasciitis, better known as flesh-eating disease, is a bacterial infection that results in the death of parts of the body's soft tissue.
Symptoms include fever, fatigue, swelling, blisters and pain. Treatment involves immediate delivery of IV antibiotics. Surgical removal of dead or infected tissue from the wound is often required.
“It came out of nowhere,” said his mom, Megan Crenshaw. “I thought he had the flu.”
STRAIGHT TO THE ER
They’d been resting that day after other family members had come down with the flu, but when her husband, Ben, got home from work Jan. 5, she checked their son’s temperature again, and it was 104.5. They took him straight to IU Health Arnett Hospital in Lafayette, where Megan works.
“When we got there, he was complaining about his leg hurting, and he was limping. I thought he had a muscle ache, but the doctor saw a little swelling in his knee and ran a scan.”
When ER doctors in Lafayette began to suspect necrotizing fasciitis, they asked if Bryson had suffered any cuts, scrapes or burns. Maybe his pet Yorkie, Ace, had nipped at him.
Nothing. There were no obvious wounds or scratches for bacteria to enter.
In a matter of hours, Bryson’s leg went from normal to swollen to red and beginning to turn purple in the ER, his mom said.
Lafayette doctors knew he needed to be transferred to Riley. He arrived at about 2 in the morning on Jan. 6. By that time, blisters had started to form on his leg.
Megan and Ben Crenshaw have a hard time coming to grips with this new reality – that their little wild child who adores actor Jamie Foxx (Mr. Foxx, are you listening?) and nerf gun fights with his brother is lying in a hospital bed. Alive but forever changed.
“It was so dire,” Megan said as she watched her child flex his muscles for an audience of nurses and therapists.
“He’s a little much today,” she smiled, “but it’s good to see him like this. He’s feisty.”
He was on a ventilator for several days – she couldn’t wait to see that removed.
“I just wanted to see my baby’s face, hear his voice, know that he’s still there. It looked like we were going to lose our kid, and we couldn’t even comprehend what was going on.”
Today, though, Bryson has come through the worst of the illness, tolerating multiple surgical procedures, including regular debridements – the removal of dead, damaged or infected tissue to improve the healing process.
Dr. Christine Caltoum, division chief of pediatric orthopedic surgery for Riley Children’s Health, said Bryson had a rapidly progressing case of necrotizing fasciitis, leaving him with a lot of dead tissue and muscle and requiring immediate, specialized care. How it happened, she can’t be sure. Sometimes these cases can be caused by trauma, but often there is no explanation.
LIFE OVER LIMB
On Jan. 18, after exploring all available options, his right leg was amputated above the knee.
“At the end of the day, it was life over limb,” his mom said.
Pediatric intensive care physician Dr. Riad Lutfi saw Bryson not long before the decision was made to amputate.
“He went back and forth to have more of the area cleaned, but I believe that there was just not enough healthy tissue to hold his leg together, and that’s unfortunate,” Dr. Lutfi said.
“You run the risk that the infection will spread and risk his life. He needed a fair chance to see what we could save, but at some point it needed to happen.”
Fortunately, he added, the disease is rare. Fewer than 20,000 cases are seen in the U.S. each year.
Riley sees about one case per year.
“It is such a scary thing,” he said, reflecting back to a previous patient who suffered a critical case of NF a few years ago and also had one leg amputated. That child is thriving today, adapting well to a prosthetic limb and staying active in wheelchair basketball.
“These kids are previously healthy and end up losing part of their body,” Dr. Lutfi said, “due to severe rapidly spreading infection.”
“But both of them are resilient and strong and have great family support and a bright future.”
SHARING THEIR STORY
Megan has been journaling about the family’s experience on Facebook, and an army of supporters, including church members and friends, are in their corner.
On this day, Bryson is keeping one eye on his mom and one eye on the photographer in the room. Asked if had any stuffed animal friends he wanted in the pictures, he shook his head and said, “I only have nurse friends.”
Naturally, he has his favorites. Among them are Milly Jennings on the burn unit, where he has spent the past week or so, and Jason Burnham on the PICU.
But his mom is his constant. He wants her to toss and kick the ball and build Mr. Potato Head during physical therapy while he stands on his one good leg with support from therapists, and he wants her to help put him back in bed after therapy.
“I’m glad to see him making progress,” Megan said, as Bryson begged for his nerf gun so he could battle his visitors. “We’re aiming to get him into inpatient rehab. His momentum is full force right now, and I’m worried if we go home, he’s going to lose that.”
And just like that, pediatric rehabilitation specialist Dr. Francisco Angulo Parker stops by Bryson’s room to evaluate him for transfer to rehab.
“We need to make sure he’s in a good place medically, so we’ll talk to his primary team and plastic surgery to make sure we’re moving in the right direction,” Dr. Parker said on Tuesday.
He looked good to go last week, but a complication has the move on hold for now, Megan said Friday.
“This has been such an emotional time for our entire family.”
But Bryson, who turns 4 next week, is the one keeping them going, she said.
“He’s like, ‘Mom, Dad, I’m good. I’m OK.’”
She recalls how she and her husband sat down to talk with their son the day before the amputation was scheduled.
“We tried to explain to him, the doctors are going to take your leg off and this is why,” Megan said. “And he’s like, ‘OK, who’s the doctor?’ Now, he can explain, ‘I had an infection in my leg and it was making me sick, so they had to take it off.’”
SOURCE OF INFECTION UNKNOWN
Doctors still don’t know where the infection started in Bryson, whether it came from bacteria in the intestines that got into the bloodstream and traveled to the leg, or vice versa.
“When they were doing the first debridement on his leg, they did a scan and found he had some necrotic tissue in his intestines,” Megan said. “Luckily, they were able to stop that.”
While it’s impossible to predict when or how the disease might strike, seeking immediate care is the single most important thing a parent can do, Dr. Lutfi said.
“Parents should seek help when a child has symptoms of infection or sepsis, including fever, not acting right, not making urine. Pay attention if you find an area of pain or swelling. Luckily, his lungs, heart, kidneys and liver remained pretty good through this process. He’s alive; a lot of adults would not survive this.”
Still, the critical care physician said, “we have a lot of work to do to learn more about necrotizing fasciitis and earlier detection.”
Spreading awareness of the disease is the family’s mission now, which is why they agreed to do this story.
“PAY ATTENTION TO YOUR KID”
“I don’t think we really understood what was going on until he had his amputation,” Megan said. “That was the moment when we began to process. What is this disease? Where did it come from? Do people know about it? We didn’t know about it; this is a whole new world.”
Her message to people is: “Pay attention to your kid. This disease can take over your entire body in a matter of hours,” she said.
“If they get a cut, maybe you think it’s not a big deal. But clean it, pay attention. Listen to your kids. He was saying his leg hurt, and I didn’t see anything. Go with your instinct, go with your gut. If I had not taken him to the ER, if I had just given him Tylenol, he might not have woken up in the morning,” she said.
“That was the scariest thing.”
Photos by Mike Dickbernd, IU Health visual journalist, email@example.com