(INDIANAPOLIS) — An Indiana family is speaking out to raise awareness after their 4-year-son developed a rare infection that led to the amputation of his right leg.
The boy’s parents, Megan and Ben Crenshaw, said they thought their youngest son Bryson just had the flu when he first developed a fever in early January.
The couple said they treated Bryson at home at first, but then followed their parental instinct and took him to the emergency room when his fever continued to rise and his heart rate became fast.
“He laid across my chest and it felt like his heart was about to explode,” Ben Crenshaw told Good Morning America. “It was like, ‘OK, let’s go now."”
The Crenshaws, also the parents of an 11-year-old son, said doctors in the emergency room also thought Bryson had the flu, until they noticed he was slightly limping on his right leg.
Concerned about his condition, doctors at the local hospital had Bryson transferred to Riley Hospital for Children in Indianapolis, around one hour from their home.
By the time Bryson arrived at the hospital, his right leg was completely red and swollen, according to the Crenshaws.
Doctors diagnosed their son with necrotizing fasciitis, a rare bacterial infection, according to the Centers for Disease Control and Prevention.
The condition is also known as a “flesh-eating disease” because it can spread quickly, killing tissues in the body. The condition may also be fatal if not caught fast enough, according to the CDC.
The Crenshaws said they had never heard of the condition, and they, as well as doctors, did not know how Bryson had contracted it.
Necrotizing fasciitis is most often contracted through a break in the skin, like a cut or insect bite, none of which Bryson had, according to his parents. In those cases, the most common cause of infection is a group of bacteria called group A streptococcus (group A strep), according to the CDC.
Group A strep is also responsible for common infections like strep throat and tonsillitis, which is swelling of the tonsils in the back of the throat.
“We could not process it,” Megan Crenshaw said. “When we initially got to Riley, there were just so many people rushing in, talking to us, wanting information, getting information.”
Bryson quickly underwent surgery during which doctors removed a part each of his small intestine and colon, as well as his appendix, because the infection had caused the tissues to die, or become necrotic, according to Megan Crenshaw.
“All we kept hearing from every doctor was, ‘Your son is the sickest kid in the hospital right now,"” she said. “We didn’t even expect for him to make it through the first few days because of how sick he was.”
Bryson beat the odds and made it through not just the first few days, but a total of 55 days at the Riley Hospital for Children. During that time, he was on a ventilator machine to help him breathe and underwent around a dozen surgeries, according to his mom.
In one surgery, doctors performed an above-the-knee amputation on Bryson’s right leg, the leg where the infection first appeared. Because the infection was located so high in Bryson’s leg, doctors were able to preserve and use some of his non-affected lower leg, which will help him be able to walk on a prosthetic later on, according to Dr. Christine Caltoum, who led the surgery.
“Part of his lower leg was actually used to extend the length of his amputation,” said Caltoum, medical director of surgical operations and division chief of pediatric orthopedic surgery at Riley Hospital. “That allows for a longer part of the leg to be salvaged to make that a bit more functional leg for prosthetic use later on.”
Bryson worked in rehab to learn how to move himself on his own and use a walker and wheelchair. Once his body heals, a custom prosthetic will be designed for him so he can get back to running after his beloved dog Ace and playing with his brother DJ.
The Crenshaws said they are sharing their story so that other parents know to follow their instinct and take their child to a doctor or hospital if they notice something is off.
“The time frame for treatment is so short,” said Megan Crenshaw. “I would hate for it to happen to another child and [caregivers] not have the information.”
Dr. Stefan Malin, a pediatric critical care physician at the Riley Hospital for Children who cared for Bryson, credited the Crenshaws’ quick actions to get their son to their local emergency room with saving his life.
“When I talked to Bryson’s mom the first time, she shared she thought he had a stomach bug or something else, and I think she realized something was not right and she got him to a place that sent him here quick,” Malin said, later adding, “The important part is being aggressive early on.”
Early signs of a potentially deadly infection like necrotizing fasciitis include a fast-spreading swollen area of skin, severe pain and fever.
Later on, it can look like blisters, changes in skin color or pus at the infected area, as well as feelings of dizziness and fatigue, according to the CDC.
The “first lines of defense” in treating necrotizing fasciitis are IV antibiotics to stop the infection and surgery to remove the infected or dead tissue, according to the CDC.
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