On the day Sophie Barry was supposed to be heading off to Duke University, her dream school, she instead found herself locked inside a nightmare. Sophie was paralyzed from the waist down, lying in a bed in the neurological ICU at Baptist Hospital.
To her terrified parents — Michelle Kaufman, a longtime sports columnist for the Miami Herald, and Dave Barry, the Pulitzer Prize-winning humorist and best-selling author — this seemed impossible. Suddenly, inexplicably, their athletic and gregarious daughter, the picture of health for 18 years, now faced an uncertain future. “People don’t just become paralyzed overnight,” said Mr. Barry, although that’s exactly what had happened.
(Watch now: The Baptist Health News Team hears from patient Sophie Barry, and her parents, Michelle Kaufman and Dave Barry. Video by Dylan Kyle.)
Sophie had been on top of the world that summer, savoring the exciting life passages of a happy young adult. She had graduated from Coral Reef High School at the top of her class, voted for the first time and was enjoying send-off celebrations as she prepared to head to Duke.
But on Saturday, Aug. 18, 2018, two days before she was scheduled to leave for college, Sophie awoke unable to move her legs and the family’s ordeal began. Her mom called Sophie’s doctor, Cindy Mitch-Gomez, M.D [1]., of Baptist Health Primary Care [2], who arranged for Miami Neuroscience Institute [3] neurologist Dalia Lorenzo, M.D. [4], to meet the family at the Baptist Hospital Emergency Center [5]. “I thought it would be something they could fix,” recalled Sophie, a cheerful optimist by nature.
But the diagnosis, made with lightning speed, was devastating: transverse myelitis [6]. It’s a relatively rare condition that causes spinal inflammation and can lead to paralysis and pain, among other debilitating symptoms. Sophie’s parents felt their insides drop when Dr. Lorenzo couldn’t say whether their daughter would ever walk again. But the neurologist did know this: Quick, aggressive treatment was crucial to give Sophie the best chance at recovering.
“We are very, very thankful that Dr. Lorenzo was so decisive and proactive,” Ms. Kaufman said.
Dr. Lorenzo ordered an MRI of Sophie’s spine — “stat.” But even before the MRI was complete, Dr. Lorenzo saw enough on the emerging images to have Sophie pulled out of the machine and rushed to the ICU. Every minute would count to stop — and hopefully reverse — the inflammation in Sophie’s spine.
A multidisciplinary team of Baptist Health specialists was assembled to tackle the complicated case. Feeling helpless, her parents came to know hospital hallways like the backs of their hands as the doctors came together, searching for answers. The uncertainty was agonizing. “If you’re a parent, there’s no worse thing,” Mr. Barry said.
Facing a Shocking Diagnosis
Transverse myelitis can have many causes — from viral, bacterial, fungal or parasitic infections to neurological and autoimmune conditions such as multiple sclerosis, and even cancer. Not uncommonly, no cause is ever pinpointed, which ultimately was the case with Sophie.
The range of expertise on Sophie’s team was wide. In addition to Dr. Lorenzo and Dr. Mitch-Gomez, it included Miami Cancer Institute hematologist Steven Fein, M.D., neurologist Bernard Gran, M.D., rheumatologist Rafael Rivas-Chacon, M.D., kidney specialist Alberto Esquenazi, M.D., and two infectious disease specialists, Lorraine Dowdy, M.D., and Raj Uttamchandani, M.D.
“We just put all our trust in those doctors and nurses and therapists, and we had no idea what the outcome would be,” Ms. Kaufman said. “There are no words to describe what we went through.”
Dr. Fein, who has treated several cases of transverse myelitis, was quickly called to weigh in on the case because “hematologists are mystery solvers,” he said. The team carried out countless blood tests and procedures, ruling out a myriad of causes, including cancer. “It’s a very poorly understood disorder,” said Dr. Fein, who ordered powerful medication to reduce inflammation and fight an autoimmune attack.
Dr. Fein was optimistic that Sophie would recover. She reminded him of a young oncology nurse at Baptist Hospital who had fallen ill with transverse myelitis some years earlier. “I had her in my mind. She was the spitting image of Sophie, just a little older when it happened. And she ultimately did walk again.”
As Sophie remained paralyzed, she was comforted by therapy dogs, friendly teenage hospital volunteers and a child life specialist wielding goody bags. “Every step along the way, everybody really impressed us,” said Ms. Kaufman, who never left the hospital during Sophie’s six-week stay. “They weren’t just doing their job; they cared about us and Sophie.”
It was the nurses, especially, who made an impact. “I never knew what nurses did before,” Sophie said. “They are the most amazing, selfless, genuinely caring people out there. They were there for any little thing I needed.”
The Turning Point
On the morning of Sophie’s 11th day of treatment, Dr. Gran walked into her room and asked her, as usual, to try to wiggle her toes. This had become an excruciating daily ritual for the family as day after day passed without Sophie being able to move. While trying to remain hopeful, Sophie’s parents had begun to wonder what the future would hold for all of them.
“Anything new?” Dr. Gran inquired hopefully.
Sophie tried with all her might, again, to move her lower body. This time, something amazing happened. “My left leg rotated a tiny bit, like an inch,” Sophie said. “I started crying.”
Breathless and ecstatic, Ms. Kaufman called Sophie’s dad, who was in his car en route to the hospital. “Sophie moved her leg!” she exclaimed. Mr. Barry was so overcome with emotion he had to pull off the road.
That moment began Sophie’s remarkable and grueling recovery, marked by an inspirational team of physical and occupational therapists who created an upbeat, intensive rehabilitation plan. She spent three weeks in the inpatient rehab program and continued outpatient therapy for another three months. Her ambitious goal: to make it to Duke last January, only one semester late.
Fighting for a Future
Sophie called on her mindset as a longtime competitive soccer player to push her body forward. First, she had to be trained to sit up again. The therapists used various machines and devices to help her stand, then to take a few tentative steps and relearn routine tasks. As soon as she could move her feet, the therapists brought her a ball to kick, incorporating soccer into the recovery plan.
“They knew exactly how hard to push and they never went too far,” Sophie said. “They created a really positive environment and were very encouraging.”
Mr. Barry appreciated how he and his wife were given a participatory role in Sophie’s rehab. “It felt like we were all a part of this healing,” he said. “The fact that they let us be a part of that made all the difference to us.”
Sophie grew especially close to her outpatient neurologic-certified physical therapist, Emily Schultz, who was 26, had played college soccer and had herself recovered from a neurological condition in college. “She’s the best person ever,” Sophie said. “She’s smart and funny and was determined to make me better. I relied on her for emotional therapy, too. I still talk to her all the time.”
Ms. Schultz thinks of Sophie as a little sister: “She’s stuck with me.” Ms. Schultz was focused on Sophie’s whole-person comeback, in addition to her mobility and strength. “Another area of recovery is having the confidence to just let go and live again,” she explained. “Sophie had the will and determination.”
The therapists helped Sophie’s parents understand the importance of supporting their daughter’s restored independence. Ms. Kaufman said she learned that “there’s a fine line between protecting your child and holding her back.”
A year ago in January, Sophie reached her goal and took off for college. Although it was a scary transition, she earned straight A’s her first semester at Duke and jumped right in to an active and wholesome social life. “This is where I knew I was supposed to be,” Sophie said. “I wasn’t supposed to be in a hospital.”
Emerging From Uncertainty
During Sophie’s treatment, Mr. Barry rescheduled a book tour for Lessons From Lucy: The Simple Joys of an Old, Happy Dog, and wrote a new final chapter about the family’s agonizing experience with transverse myelitis. In it, he expresses his eternal gratitude for the care Sophie received. “Thank God for Baptist,” Mr. Barry said.
As dark and difficult as it all was, Ms. Kaufman considers Sophie’s recovery “truly a miracle” and credits her entire healthcare team. “We could not imagine having better care,” she said.
Sophie’s parents have maintained a connection with Dr. Fein, who described himself as a “huge Dave Barry fan.” He put them in touch with the nurse who had recovered from transverse myelitis. “It’s great to see Sophie doing so well, and it’s fun to know them,” Dr. Fein said. “All the stars aligned for her to recover.”
For Sophie, that whole year was one giant, frightening and ultimately exhilarating rollercoaster ride — from the crashing precipice of her illness to the spectacular recovery that put her life back on track. Before returning to Duke in late August, she spent the summer working, traveling and hanging out with family and friends. She and her mom enjoyed doing Zumba classes together. “The more I exercise, the better it feels,” Sophie said.
Like most people her age, Sophie had felt invincible, but her experience left her with the existential realization that “things can happen to you that you’re really not expecting.”
And that has altered her outlook. “It sounds cliché, but I’m just enjoying the little things,” Sophie said. “Just walking around and thinking, wow, my legs are working; I don’t need assistance.
“Every morning I really do have a moment. I haven’t woken up one day since then without being grateful and enjoying the little things.”