The injury didn’t look good. Actually, it looked quite bad.

Baylen’s mom, Amy, after hearing some commotion in the family’s home, had hurried into the living room to find her 6-year-old son lying on the floor. 

His older brother, Banyan, was crying. The face of his dad, Matt, was as white as a sheet.

Amy peered down at her son’s injured ankle — and caught her breath.

It was a deep slice, almost like a perfect butcher’s cut, right down to the bone.

Moments earlier, the boys had been chasing each other playfully around the pool deck with a water hose — just having fun, doing what kids do.

As Baylen dashed up onto the doorstep to avoid the spray of water, he slipped and fell onto a terracotta pot, one of the broken shards slicing into his ankle.

“We could see the bone exposed,” Amy says. “We could see the terracotta and the dirt in the wound.”

Baylen’s parents rushed him to the Emergency Center at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida, where clinical staff comforted him, treated the wound, stitched it up, and sent him home with medicine.

So many stories of kids’ injuries go something like this: An accident occurs. A child is rushed to the Emergency Center where caring and expert staff tend to the injury. The child returns home to heal and carry on — perhaps a little wiser, a little more cautious than they were before.

But that’s not how Baylen’s story unfolded.

Medical Mystery

In the days after his accident, Baylen’s parents noticed their son’s wound didn’t appear to be healing. Their pediatrician agreed, and after seeing signs of infection, sent him back to Johns Hopkins All Children’s.

Surgeons reopened the wound and meticulously cleaned it out. Baylen received broad-spectrum antibiotics for several days in the hospital before doctors allowed him to be discharged.

Bacterial infections are not uncommon after certain injuries, and they typically respond well to antibiotics. But with every passing day, even with medicine and careful attention to the wound, Baylen’s injury appeared to be getting worse, not better. 

On Halloween night, Baylen was readmitted to the hospital, this time for what would turn into a months-long stay and the challenge of this family’s life.

“It’s hard for people to conceptualize that my son cut himself on a flowerpot and could have lost his leg — or his life,” Amy says.

Baylen’s care team was comprehensive from the start. The hospital’s infectious disease experts were hyper-focused on solving this medical mystery. Orthopaedic surgeons were on the case to treat osteomyelitis — an infection that had penetrated the bone underneath the laceration. A skilled and compassionate nursing staff went “above and beyond” to offer the best care to Baylen as the medical team and his family searched for answers. 

It was a confounding puzzle. Baylen was a healthy child, not immunocompromised. He had a raging infection, but so far, lab cultures were coming back negative.

What was preventing this patient from healing?

Within days, one lab result would finally provide an answer to this riddle – one that no one expected.

Rare Mold 

When Baylen cut his ankle on the flowerpot, a rare type of fungus called scedosporium infected the wound. This mold can be present in soil or polluted water. 

“It happens to be a very aggressive, very invasive fungus,” says pediatric infectious disease specialist Fernando Bula, M.D. 

“We knew it was going to be a challenge right away. It’s very, very rare to have this type of infection.” 

So rare, in fact, that most doctors have never seen this in a patient before. 

“When the labs came back that it was this crazy, weird mold that hardly anyone had ever heard of, we just got quiet at first,” Matt says. “Then you go through all the emotions. You get angry, you get scared. But we had to remember our son was looking to us for guidance.” 

The infectious disease team methodically placed Baylen on different combinations of anti-fungal medications and antibiotics — all in an attempt to find the ideal “cocktail” of drugs that could knock down the infection without causing complications. 

While the infectious disease team focused on the systemic medications, orthopaedic surgeon Lee Phillips, M.D., centered his efforts “locally” on the site of the infected ankle. To stay ahead of the fungus, he performed multiple surgeries to drain, clean, and irrigate the wound, and to scrape the bone free of the aggressive, growing mold. 

“One of the concerns for Baylen is that where his cut was, the bone was involved right around his growth plate,” Phillips says. “So yes, we were cleaning out infected, soft, unhealthy bone, but we also had to be respectful of the cartilage of the growth plate.” 

It was a trying time for a typically active little boy who just wanted to run around and play, like other kids his age. He longed to go swimming and to play baseball, like his big brother.

After two months in the hospital, just before Christmas, a delighted Baylen wheeled himself out through the hospital doors to enjoy the holidays at home with his family, still unable to walk, and receiving anti-fungal drugs through an IV. 

The multi-faceted approach to treating Baylen’s infection had shown signs of getting it under control — but doctors knew they needed more.

Silver Bullet 

Bula and the infectious disease team continued to pour over the limited literature for treating a case like Baylen’s. They reached out to fungal experts around the country and internationally.

A common denominator began coming back: an investigational drug called olorofim, the first of a new class of drugs to treat rare, treatment-resistant fungal infections like this one. 

“The other anti-fungals were helping, but we believed the olorofim was going to be the ideal — the true ‘silver bullet’ we needed,” Bula says. 

The novel anti-fungal drug wasn’t readily available in the United States — but with relentless pursuits, the infectious disease team was able to obtain authorization from the Food and Drug Administration for its use in this patient as an Investigational New Drug Application. 

Once Baylen was on the new drug, doctors could move forward with some major surgeries that would make a difference for him. 

To close the wound and allow for healing, pediatric plastic surgeon Alex Rottgers, M.D., performed a procedure called a “muscle flap,” taking muscle tissue from Baylen’s opposite thigh and surgically transplanting it to his ankle — covering the wound, connecting the veins and arteries. 

After some healing, orthopaedic surgeon Phillips then performed a bone graft — taking bone from Baylen’s pelvis to fill the void of bone in the ankle joint. 

One of the difficult aspects of this rare infection is that it can sometimes recur months or even years down the road.

But with major successful surgeries behind him, and a promising new drug in his system, Baylen’s care team was more optimistic than ever. 

The family was grateful to Bula, Phillips and the entire team that had pulled out all the stops for Baylen — from infectious disease, to orthopaedics, to the Department of Anesthesia. From dedicated hospitalists to the residents who worked long hours to care for Baylen. From nurses to Child Life specialists who helped to ease his long journey.

“The care was absolutely amazing,” Amy says. “In my darkest time, where so much felt out of control, Johns Hopkins All Children’s gave me as much control as they could. I was a part of my child’s care. I felt ‘heard.’” 

Now it was a matter of watching and waiting. 

Hope 

In the weeks and months following Baylen’s hospital stay, there were encouraging signs. 

His infection markers improved, and his wound continued to heal. 

His central line, a thin tube allowing for blood draws and the delivery of medications, was removed, and for the first time since the accident, he got to go swimming.

While Baylen wasn’t yet bearing full weight on his injured leg in physical therapy sessions, he was getting stronger each day. 

There were other things to celebrate, too.

That summer, the family welcomed a third son, naming the baby Beacon, meaning “light in the darkness.” 

One day, during a visit to his grandparents’ farm in West Virginia, Baylen surprised everyone with a new milestone. 

“My dad rushed inside the house in tears,” Amy says. ‘He said, ‘You have to come see this!’” 

The family watched in awe as Baylen walked up the sidewalk to the front porch — his first full steps. 

Looking Forward

Today Baylen is back in school, vibrant and full of energy. He continues to make strides in physical therapy, even running on a treadmill, looking every bit the budding athlete. 

“That child is so strong, so determined, such a fighter,” Amy says. “He is a miracle.” 

Baylen’s family knows that this is a type of infection that could someday come back, but they rest in the knowledge that if it does — they now have a solution that appears to stop it in its tracks. 

Amy and Matt hope their journey will help light the path for others — even as their own child learns to thrive once more. 

“I think Baylen will take a lot from this experience, because he remembers everything,” Matt says. “I hope he’s happy. I hope he knows we were here for him. And I hope he plays baseball.” 

Lee Phillips, M.D. is on the medical staff of Johns Hopkins All Children’s Hospital, Inc. (“JHACH”), but is an independent practitioner who is not an employee or agent of JHACH.