Back from the brink

Five years after rare illness almost killed her, Sophie Branen will tell her story to Hope Walk audience

By Jennifer Eisenbart

Staff Writer

Sometimes, it can be terrifyingly easy to lose hope.

And sometimes, a simple gesture by a complete stranger can restore it.

In 2008, then-14-year-old Sophie Branen was confined to a pediatric intensive care bed in Children’s Hospital of Wisconsin, unable to move much more than an eyebrow or a finger.

A week into what would turn into a five-week hospital stay due to Guillain Barre syndrome, Branen’s parents Shad and Kristine both felt comfortable enough finally to not be at her bedside that night.

Late that evening, the boy in the ICU room next to hers died. While Branen could not move – and couldn’t speak, thanks to feeding and breathing tubes – she could hear everything than transpired in the room next to hers.

“I knew fully well what was going on. His mother went ballistic,” recalled Sophie, now 19 and a student at the University of Wisconsin-Milwaukee. Scared, and by her own admission, losing hope, the teenager managed to hit her call button and summon a nurse.

A nurse came in, and picked up a book that Sophie’s mother had been reading to her. Now, she can’t even remember the book – but she does remember the moment.

“She just held my hand,” Sophie said. “I don’t even know how long she stayed, but she stayed till I fell asleep.”

Moments like that defined Sophie’s stay at Children’s Hospital – moments of hope and relief scattered among helplessness and terror, both for Sophie and her parents.

Sophie’s battle with Guillain Barre – a rare nervous system disorder normally triggered by an infection that results in quick-progressing paralysis – got the attention of many people. On May 18 – five years after her ordeal – she will share her story as the keynote speaker at the Hope Walk at Burlington High School.

Sophie has been to the Hope Walk before, but never in this capacity.

“We obviously like to give back wherever we can,” said her father, Shad. “I think it’s quite an honor for Sophie.”

His daughter added, “I never expected I’d be speaking at it.”

The beginning

Sophie’s journey started the weekend of May 3, 2008, for the then-Karcher Middle School eighth grader. Out on a video shoot for her parents’ business, she started feeling weak, even collapsing at one point.

Sophie didn’t say anything to anyone, though. It was a tough weekend for everyone, and she wanted to stick it out.

But by the time she started getting ready for bed on Sunday, May 4, she had to admit something was wrong. Sophie went to bed, thinking some sleep would help.

She ended up wide awake for most of the night, unable to find a comfortable position.

By the next morning, her parents knew she needed to see a doctor, and scheduled an appointment that day.

Sophie never made it there. Sitting in front of the television, she suddenly couldn’t even hold up her head.

Shad Branen picked up his daughter and took her to the emergency room at Aurora Memorial Hospital of Burlington. Within a short period of time, Sophie was in an ambulance, on oxygen and headed for Children’s Hospital.

She was on oxygen for the entire trip, but when she arrived there, doctors intubated her almost immediately. When Sophie was awake, she was aware – but she couldn’t do a thing for herself.

“When you see your parents cry, you want to do something – and you can’t,” she said. “You can’t help anyone else, you can’t help yourself.

“You’re just stuck inside with your thoughts.”

Outside looking in

For Shad and Kristine Branen, the experience was almost surrealistic. Their daughter’s decline was so rapid, they couldn’t even break it down hour by hour.

“At that point, it was difficult to imagine things getting worse than it already was. And it kept getting worse,” Shad said. “Her only communication was an eyebrow.”

Kristine remembers sitting with her daughter in the PICU room, and nurses asking her if Sophie had begun drooling yet.

“I was defensive,” she said. “My daughter doesn’t drool.”

And yet, as Sophie’s facial muscles were finally paralyzed, that is exactly what happened.

As Shad put it, “Where is bottom here?”

It would take a while to find it. While Shad and Kristine split shifts to keep someone at Sophie’s side at all times, her sister – sick with a cold – wasn’t even allowed to visit at first.

And doctors performed test after test. As Kristine explained, Guillain Barre is diagnosed by default, after everything else is ruled out.

“They have to give her a bunch of tests to know what it’s not,” said Kristine, who saw her daughter go through a spinal tap, and a nerve conduction test. “Each test, there’s a new level of fear.”

One time, Sophie needed to be injected with an element. If she responded to it, Kristine said, she would be diagnosed with that disease. The element could cause complications, though, so Shad and Kristine were told a number of doctors and nurses would be in the room for the test.

Kristine left for a drink of water – and came back to find her daughter’s bed surrounded by doctors and nurses. She didn’t know the test had begun when she’d left the room, and panicked.

That emotion bled over into everything else. Even going down to the cafeteria to eat was a chore, albeit a necessary one, to “stay strong” for Sophie.

At one point, Shad – who has a sweet tooth along – asked his wife if she wanted to split a cookie.

Kristine broke down crying.

“He goes, ‘I’m glad I didn’t ask if you wanted a piece of cake,’” recalled Kristine. And what was worse: in the PICU, every single parent was sharing that same nightmare.

“It’s a world you never imagine,” Kristine said.

Getting better

After that first week, Sophie was diagnosed and began treatment for Guillain Barre – five days of intravenous immunoglobulins. With her own body essentially fighting against her, she received plasma, replacing the fluids in her body so it would quit fighting her.

In that time, Sophie was awake and aware – of her parents sitting with her, of her sister, Chloe, of her doctors and nurses. Her muscles were out of control, as was her body temperature and her heart.

It took two weeks before Sophie was considered stable, and finally transferred out of the PICU. That same day, she had her breathing and feeding tube removed.

“I just wanted to get her out of ICU,” recalled Kristine. “She could do physical therapy the rest of her life, I wouldn’t care. Just so long as she could live through ICU.”

And yet, as Sophie began a rapid recovery that surprised her doctors, the standards were raised. Kristine may have just wanted her daughter out of ICU, but Shad admitted to wanting something more every time Sophie got something back.

The ability to breathe on her own? He then wanted her to be able to move her face. Eating on her own? That was followed by wanting something else back.

And through it all, Sophie realized how much everyone at Children’s Hospital gave to her. The nurse who held her hand that one night never had a name or really even a face, though Sophie wishes she knew.

But other doctors and nurses – a favorite nurse, Kristine, and Dr.  Rainer Gedeit, a pediatric critical illness specialist at Children’s Hospital – remained by her side.

It took time. Even when Sophie was released from the hospital, she went through months of physical rehabilitation, even a little occupational therapy – regaining everyday skills she had lost in the course of the illness. Ironically, she ended up with one of the more severe forms of the disorder, and recovered quicker because of it.

By fall of 2008, Sophie was ready to join her freshman class at Burlington High School. She had managed, once out of the hospital, to attend her middle school graduation and achieve an immediate goal – walking across the stage to graduate.

And yet, when she went back to school, things really weren’t back to normal. She wanted nothing to do with doctors and hospitals, got tired more easily, and dealt with curious classmates who really didn’t know how to deal with her.

“People were kind of scared to bring it up,” Sophie said.

And yet, as she gained more footing and got more comfortable, Sophie found she had developed a deep gratitude for everyone who walked her through her ordeal.

“We couldn’t have done that on our own,” she said. “They gave me my whole life back.”

Moving forward

Sophie began speaking at the Rotary Club, working with the teen advisory council at Children’s Hospital – and discovering that she had motivation to become a nurse.

“That whole experience obviously influenced that decision,” said Shad. Sophie added, “It never even crossed my mind before that.”

She hopes to give a few years back to Children’s Hospital, and possibly go into nutrition. As for nursing, rather than being a doctor, Sophie’s reasoning is that she would be the one holding a child’s hand when they are scared – just like that one nurse did for her.

“They would do anything just to make me smile or get me up and walking,” explained Sophie. “It’s just amazing how everything turned out. I definitely feel lucky for the family that I have. And being at Children’s Hospital, they were better than anyone could have been.

“One moment can define so much.”