Sudden Paralysis Reversed By Quick, Aggressive Treatment

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., of Baptist Health Primary Care, who arranged for Miami Neuroscience Institute neurologist Dalia Lorenzo, M.D., to meet the family at the Baptist Hospital Emergency Center. “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. 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 sodecisive 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 emergingimages to have Sophie pulled out of the machine and rushed to the ICU. Everyminute would count to stop — and hopefully reverse — the inflammation inSophie’s spine.

A multidisciplinary team of BaptistHealth specialists was assembled to tackle the complicated case. Feelinghelpless, her parents came to know hospital hallways like the backs of theirhands as the doctors came together, searching for answers. The uncertainty wasagonizing. “If you’re a parent, there’s no worse thing,” Mr. Barry said.

Facing a Shocking Diagnosis

 Transversemyelitis can have many causes — from viral, bacterial, fungal or parasiticinfections to neurological and autoimmune conditions such as multiplesclerosis, and even cancer. Not uncommonly, no cause is ever pinpointed, whichultimately was the case with Sophie.

The range of expertise on Sophie’s team was wide. Inaddition to Dr. Lorenzo and Dr. Mitch-Gomez, it included Miami Cancer Institutehematologist StevenFein, M.D.,neurologist BernardGran, M.D.,rheumatologist RafaelRivas-Chacon, M.D., kidney specialist AlbertoEsquenazi, M.D., and two infectious disease specialists, LorraineDowdy, M.D., and RajUttamchandani, M.D.

“We just put all our trust in those doctors and nursesand therapists, and we had no idea what the outcome would be,” Ms. Kaufmansaid. “There are no words to describe what we went through.”

Dr. Fein, who has treated several cases of transversemyelitis, was quickly called to weigh in on the case because “hematologists aremystery solvers,” he said. The team carried out countless blood tests andprocedures, ruling out a myriad of causes, including cancer. “It’s a verypoorly understood disorder,” said Dr. Fein, who ordered powerful medication toreduce inflammation and fight an autoimmune attack.

Dr. Fein was optimistic that Sophie would recover. Shereminded him of a young oncology nurse at Baptist Hospital who had fallen illwith transverse myelitis some years earlier. “I had her in my mind. She was thespitting image of Sophie, just a little older when it happened. And sheultimately 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, whomade an impact. “I never knew what nurses did before,” Sophie said. “They arethe most amazing, selfless, genuinely caring people out there. They were therefor 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 hertoes. This had become an excruciating daily ritual for the family as day afterday 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 ofthem.

“Anything new?” Dr. Gran inquired hopefully.

Sophie tried with all her might, again, to move herlower body. This time, something amazing happened. “My left leg rotated a tinybit, like an inch,” Sophie said. “I started crying.”

Breathless and ecstatic, Ms. Kaufman calledSophie’s dad, who was in his car en route to the hospital. “Sophie moved herleg!” she exclaimed. Mr. Barry was so overcome with emotion he had to pull offthe road.

That moment began Sophie’s remarkable and gruelingrecovery, marked by an inspirational team of physical and occupationaltherapists who created an upbeat, intensive rehabilitation plan. She spentthree weeks in the inpatient rehab program and continued outpatient therapy foranother three months. Her ambitious goal: to make it to Duke last January, onlyone semester late.

Fighting for a Future

Sophie called on her mindset as a longtimecompetitive soccer player to push her body forward. First, she had to betrained to sit up again. The therapists used various machines and devices tohelp 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 neverwent too far,” Sophie said. “They created a really positive environment andwere very encouraging.”

Mr. Barry appreciated how he and his wife weregiven a participatory role in Sophie’s rehab. “It felt like we were all a partof this healing,” he said. “The fact that they let us be a part of that madeall the difference to us.”

Sophie grew especially close to her outpatientneurologic-certified physical therapist, Emily Schultz, who was 26, had playedcollege soccer and had herself recovered from a neurological condition incollege. “She’s the best person ever,” Sophie said. “She’s smart and funny andwas determined to make me better. I relied on her for emotional therapy, too. Istill 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-personcomeback, in addition to her mobility and strength. “Another area of recoveryis having the confidence to just let go and live again,” she explained. “Sophiehad the will and determination.”

The therapists helped Sophie’s parents understandthe importance of supporting their daughter’s restored independence. Ms.Kaufman said she learned that “there’s a fine line between protecting yourchild and holding her back.”

A year ago in January, Sophie reached her goal andtook off for college. Although it was a scary transition, she earned straightA’s her first semester at Duke and jumped right in to an active and wholesomesocial life. “This is where I knew I was supposed to be,” Sophie said. “Iwasn’t supposed to be in a hospital.”

Emerging From Uncertainty

During Sophie’s treatment, Mr. Barry rescheduled abook 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 withtransverse myelitis. In it, he expresses his eternal gratitude for the careSophie received. “Thank God for Baptist,” Mr. Barry said.

As dark and difficult as it all was, Ms. Kaufmanconsiders Sophie’s recovery “truly a miracle” and credits her entire healthcareteam. “We could not imagine having better care,” she said.

Sophie’s parents have maintained a connection withDr. Fein, who described himself as a “huge Dave Barry fan.” He put them intouch with the nurse who had recovered from transverse myelitis. “It’s great tosee Sophie doing so well, and it’s fun to know them,” Dr. Fein said. “All thestars aligned for her to recover.”

For Sophie, that whole year was one giant,frightening and ultimately exhilarating rollercoaster ride — from the crashingprecipice of her illness to the spectacular recovery that put her life back ontrack. Before returning to Duke in late August, she spent the summer working,traveling and hanging out with family and friends. She and her mom enjoyeddoing Zumba classes together. “The more I exercise, the better it feels,”Sophie said.

Like most people her age, Sophie had feltinvincible, 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 soundscliché, but I’m just enjoying the little things,” Sophie said. “Just walkingaround and thinking, wow, my legs are working; I don’t need assistance.

“Every morning I really do have a moment. I haven’twoken up one day since then without being grateful and enjoying the little things.”

Healthcare that Cares

With internationally renowned centers of excellence, 12 hospitals, more than 27,000 employees, 4,000 physicians and 200 outpatient centers, urgent care facilities and physician practices spanning across Miami-Dade, Monroe, Broward and Palm Beach counties, Baptist Health is an anchor institution of the South Florida communities we serve.

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