Brandi Teplicek was wearing down, from weeks of watching this mystery bug – an insidious force that bowed to no drug, no treatment – slowly eat up flesh. Her daughter, 14-year-old Briannah Buckley, would endure eight surgeries as doctors at Cook Children’s Medical Center in Fort Worth drained the open wound on her leg, seized samples for cultures that yielded nothing and painstakingly scraped away diseased skin and flesh.
It had been two months, and still no one could name this germ, much less stop it.
Yet Briannah kept her mother going. By now, the Fifth-floor nurses had grown to adore her. Diagnosed with autism and Asperger’s syndrome at 4, Briannah pulled everyone over to the side of life. She’d be singing Miley Cyrus’ “The Climb” while they unwrapped the dressings on her lower left leg, revealing a raw mass of red blotched with pockets of decay.
“There’s always gonna be another mountain, I’m always gonna wanna make it move … ”
She never winced, she never shed a tear. It could have been a function of her autism; children with this condition can have a diminished sensitivity to pain. But there was something about Briannah, a gift of resilience, of courage, that went much deeper. She was pulling from reserves that no one else had. She’d dubbed her hospital room “My Happy Room,” and you weren’t allowed to cry there. “That’s not being very nice to cry,” she’d say to her mom, slowly framing thoughts with words. “Because I love you. And I don’t like you crying, because it will make me cry.”
Little did her daughter know, but Brandi was busting the rules all the time now. Outside her daughter’s presence, she was a wreck. One day in September 2011 she was getting food – she’d taken a leave of absence from her manager job at Home Depot to practically live at the hospital – when a doctor summoned her upstairs to the nurse’s station.
In measured tones, the doctor told her, “We found out what it is.” Great, Brandi said, trying to contain herself. So what is it?
“I really don’t want to tell you the name,” the doctor replied, pausing. “Because you will Google it. And it will worry you.”
Brandi’s friend, who’d accompanied her to the nurse’s station, interjected. “Can you just write it down for us?” she said.
The doctor found a piece of paper, wrote two words and passed it to Brandi.
The mother of four girls walked right back to Briannah’s room, sneaked around the corner, pulled out her iPhone and typed in the words Pythium insidiosum. She quickly skimmed the top results. “I saw pictures. Of humans and animals,” Brandi recalls. “I saw worse cases than Bri’s. I saw a whole leg that was completed covered in this, a little boy’s side of his face.
“She knew what was gonna pop up. And sure enough, I freaked out. Especially when it said there was no known cure, and the only survivors were people who had amputations.”
When Cook Children’s staff reached Dr. Donald Murphey, Briannah’s infectious disease specialist, with the verdict, he pulled out the literature and found record of only four cases of Pythium insidiosum in humans in the United States. Ever. He was more than shocked.
“Oh my God, yes,” he recalls. “I’ve been practicing for years, and my partners and I have never seen a case of it. New things pop up, but this was just much rarer.”
Now they had to find a way to fight it, for the patient who’d crept into everyone’s heart, who at any given moment was cheerfully absorbed in video games, or puzzles, or serenading the hospital staff in the halls, on the way to surgery somewhere.
“Always gonna be an uphill battle, sometimes I’m gonna have to lose … ”
The little girl with thick blond hair and blue eyes knew Mama, Dada. She gave affection; she scarfed up attention. She hit the usual milestones, walking at 12 months.
Then a massive transformation took place in the space of three months – shutting off the sweet girl Brandi knew. “She stopped talking, she didn’t make eye contact,” recalls Brandi, now remarried. “She didn’t like anybody touching her, hugging her or picking her up.”
She slid backward, regressing to crawling. Then the seizures started. “We couldn’t control them, so they had to keep upping her medicine,” Brandi recalls. “The medications kept her in a daze.” For a long time, Brandi blamed Bri’s developmental delays on the seizures. As soon as they got the seizures under control, she theorized, little Bri would snap back into place. She realizes now that she was in “total denial.”
Her husband, Kevin Teplicek, gently tried to reason with her. “Something is wrong with Briannah,” he said. “We need to get her tested.” Brandi was angry that he’d even suggest such a thing about her child, but she eventually gave way. After much testing and enrollment at 3 years old in Keller ISD, which is known for its strong special education programs, Briannah was diagnosed as severely autistic.
If Briannah wanted something to drink, she’d point and grunt. She’d become agitated and overwhelmed and would take a swing or scream at anyone who tried to approach her.
The only affection she’d accept in those early years, Brandi recalls, was the occasional hug offered through the protective sheath of a weight blanket – a therapeutic covering used for children with the sensory problems that often accompany autism. “Through the blanket,” Brandi says, “she started letting us touch her and pick her up.” She found other things that soothed the aggression and excitability – music, singing, swinging. “She loved the back and forth motion,” Brandi says.
In Keller ISD, Briannah entered a program called Life Skills and began to make gradual strides through constant interaction with teachers, students and her family. She started talking at 5 – and developed a remarkable ability to watch an animated Disney movie such as The Lion King one or two times and repeat every line of dialogue from memory, with the corresponding accents. Though she had difficulty negotiating everyday tasks such as buttoning buttons or combing hair, Bri could assemble difficult puzzles with ease.
Despite her social and communicative challenges, typical for children with autism, Briannah grew to love school and hang out with her friends. “She gets along with everybody,” says her teacher of the last two years, Kristy Quinton. “She’s a friend to everyone.”
By the time she turned 14 last spring, Briannah loved texting her friends, riding her bike and jumping on the back yard trampoline. She excelled in math, could still remember all the words to her favorite songs and had been upgraded to a diagnosis of mild autism.
She went to her dad’s house for part of the summer then came home to Keller for a family reunion with what appeared to be a bug bite on her left leg. It didn’t look like anything to be worried about.
Brandi’s iPhone captures the course of a bizarre affliction – from a reddish welt that resembles nothing more than a mosquito bite, swollen from scratching; to a black-rimmed sore with raw, inflamed flesh peeking from inside; to an oozing sinkhole that gradually eats away flesh from the entire circumference of her lower left leg, exposing muscle and tendon.
At first, the wound was diagnosed as a staph infection at a doctor’s office, and Briannah took antibiotics. But it only got worse, growing, turning purple, leaking pus. In August 2011, Briannah would have her first surgery at Cook Children’s hospital, to drain the wound. The hospital prepared cultures, but nothing showed up to explain the ailment.
The day after surgery, Brandi took her daughter back to school. In the space of a few hours, she says, the wound had morphed. She lifted the bandage and saw roiling purple flesh. “It changed on me,” she says.
On Aug. 22, 2011, Briannah was admitted to the hospital again. Dr. Murphey turned his attention to uncovering the identity of the disease. “You’d see it and think, ‘Oh, it’s stable now,’” he says. “But if you’d wait a few days and come back, it would be bigger.”
Murphey searched for clues. The hospital’s microbiology lab examined a piece of infected tissue under a microscope and saw hyphae, tiny strands of cells associated with fungal infections. So Murphey threw the strongest antifungal medicines at the disease. But she didn’t improve.
Briannah would endure seven more surgeries to clear out infected tissue. Each time, Brandi faced an unbearable moment in her daughter’s room – when nurses lifted the dressing a day or two after surgery. Brandi’s eyes shot like a laser to the exposed flesh.
“I would cringe every time they took the bandage off,” she says. “Just the anticipation of it got me. I’d be nervous, I’d be shaking.
“The nurses could always tell when I saw it because of the look on my face. I knew right where it was. I could tell you where the pockets of infection were.”
Brandi knew the disease wasn’t getting any better, but you couldn’t tell from Bri. She’d help the nurses unfurl the bandage. “She’d read a book or listen to music or sing a song while they changed it,” Brandi recalls. “To us, it was not normal. To her, I think that’s the way she coped with it. She was able to see it, look at it, analyze what was going on with her.”
The Cook Children’s staff were increasingly frustrated; this isn’t the way modern medicine was supposed to work. “You take sick kids, you treat them, and they get better,” Murphey says. “So to have a kid not get better when you’ve done everything you can, it really surprised me.”
Murphey turned to a cutting-edge technology that is changing the way medicine is done – PCR, polymerase chain reaction, a scientific technique in which tiny bits of DNA are amplified, sequenced and compared to a database holding the genetic identities of specific germs. He sent a piece of Briannah’s tissue to the University of Washington in Seattle, and microbiologists quickly returned the astonishing match – Pythium insidiosum, a disease found more commonly in horses, cattle and dogs who’ve had contact with stagnant, swampy water.
Pythium is a primitive germ that has properties of both algae and fungus, which explained why all of the antifungal medicines didn’t do much good. The Cook Children’s staff, stunned by the results, immediately surveyed the scant literature on Pythium and pursued every option for treatment – to no avail. Hospital staff would trace lines on Briannah’s leg to track the advance of the disease, and the lines would get gobbled up. Murphey found himself in a place he never thought he’d be, harkening back to the days when doctors knew nothing of germs or antibiotics – a bad limb simply had to go. Murphey and other Cook Children’s physicians broached the topic of amputation with Briannah’s family, and Brandi immediately consented. “Really, the amputation was one last attempt to cure her of the disease,” Murphey says. “We had to give up saving her leg to save her life.”
An unwanted doll
Brandi never knew exactly what her daughter could process as the disease advanced, causing high fevers every day, and, at the end, constant vomiting. Briannah was an intelligent girl, but her autism caused communication barriers that were difficult to breach. Despite her daughter’s cheerful demeanor in the face of a terrible trial, Brandi knew the weeks in the hospital had taken their toll. Briannah seemed to realize it too.
“Mom, I’m done,” she said at the end, weak with fever. “Tell them to take the sick leg. I can’t do this anymore.”
To prepare her for what was considered radical surgery, a member of the hospital staff crafted a Cabbage Patch doll for Briannah, with a shock of bright orange hair and a far more unusual feature – a left leg that ended mid-thigh in a stump. The night before the amputation, she presented Bri with this special doll. “This is what you’re going to look like when you come out of surgery,” the lady explained. “They’ll take this sick leg, and you’re gonna be just like her.” Briannah grabbed the doll and threw it. She changed the subject. Brandi persisted with the doll the rest of the evening, handing it to Bri in her hospital bed. Most of the time she ignored it. Finally, she tucked it under the covers beside her. “I think in her own way, she tried to grasp the concept,” Brandi says.
Briannah was singing, as usual, when the staff wheeled her to surgery. Before parting with the numerous family members who’d gathered to support her, Briannah insisted on praying for her doctors and family members – instead of allowing them to pray for her.
It was typical Bri, who kept the rules she set for the Happy Room. And even on the day of surgery, she had singing on her mind.
“Ain’t about how fast I get there, ain’t about what’s waiting on the other side, it’s the climb … ”
The operation, led by orthopedic surgeon Dr. Jason Kennedy, lasted three and a half hours, and Brandi and Briannah’s father waited anxiously to see her. Finally, Brandi was allowed to visit her daughter in the ICU, where she’d been transferred. Briannah was still groggy from surgery. She opened her eyes and saw her mom. At some point, she tried to sit up and realized her balance was off. She pulled back the covers and saw the stump, with a drainage tube snaking from it.
“Mom, where did my leg go?” she asked. “I want my leg back.” Then without another word, she started ripping at the tubes and pulling off the bandages. “Nurse! Come in here!” Brandi screamed. Without even thinking, she clambered onto the bed and pinned her daughter down. “I had her hands locked down,” Brandi says, “and I had my foot wrapped around her good leg so she couldn’t kick up. I just did it.”
The nurses came running and pumped drugs into Briannah’s bloodstream, putting her back to sleep. The girl’s thrashing had only pulled one connection, to the heart monitor, but Brandi was left to wonder how her daughter would scale this mountain.
Took off running
The next morning, Briannah woke up in high spirits, singing. She wanted back on the Fifth floor, in her Happy Room, where she knew all the nurses. Within days, every sign of infection had ceased. On October 18 she was discharged for good.
Physicians, counselors, and physical therapists will tell you that an amputee goes through a process of grieving, characterized by anger and depression. Getting up on a prosthetic and learning to walk again can take as long as a year, not because the patient is physically unable but because he or she can’t face the reality of never being whole again.
But Briannah was an altogether different case. Never pausing for self-pity, she skipped all of the emotional peaks and valleys and made an astonishingly swift recovery. She was up and walking on a prosthetic in a month and a half, a process that typically takes a year.
Brandi recalls the breakthrough. “Mom, I want to ride my bike,” Briannah said one day.
“Baby, you can’t ride the bike till you’re off the walker, cane, everything.” Briannah threw the walker aside. “Watch this, Mom!” And she took off. A week later, she was up and riding her bike, with what she called her “fake leg” strapped into a pedal. She remembered to stop with her good leg down.
Gordon Stevens, owner of Baker Orthotics and Prosthetics, had never seen anything like it. He’d witness another milestone when Briannah learned to use a running prosthetic, watching another amputee run for 10 minutes then ripping across the parking lot on her own. “She just has a totally different way of how she approaches things and masters things,” Stevens says. “She doesn’t relate it to the past, and she doesn’t have fear. If she can see it, she can do it.”
One day, Brandi had a surprise for Lindsay Luker, Bri’s physical therapist. She whipped out her iPhone, queued up a video and hit “play.” Boing … boing … whoosh. It was Briannah, doing a one-legged flip on a trampoline, blond hair flying everywhere. “At first I had a mini-heart attack,” Luker recalls. “But she’s just being a normal kid, and that is so heart-warming to me. Having her diagnosis of autism has really been a silver lining for her. She has always had to work harder than other kids. She doesn’t feel sorry for herself.”
These days, Briannah is back at the school she loves, and she’s eagerly awaiting her birthday this month – she is getting an iPad and a brand-new trampoline, as she’ll happily inform you. She runs in Special Olympics and has been moved to the fastest class.
Watching Briannah’s progress has made Dr. Murphey reflect on the nature of “differences.” He saw her come through “a horrible couple of months” as well as any kid he’s seen. “Maybe that’s autism, where you kind of isolate emotions, feelings,” he says. “We don’t think of autism as being a strength for dealing with difficult issues, but in this case it was.”