Carly Messer battles Guillain-Barré Syndrome
“I heard about you taking steps. That is phenomenal,” Carly Messer’s pulmonologist tells her, as he stands over the teen’s bed in the pediatric rehabilitation ward, her third stop in the hospital she’s been confined to since May.
He continues: “You’ve also been off the ventilator for six hours? What, are you trying to break some record or something?”
Carly is smiling up at him. Smiling, by the way, is something she wasn’t physically able to do when she first got here.
But at the same time, Carly, a rising 10th-grader at Fort Mill High School in South Carolina, and her parents Robby and April are still trying to wrap their heads around the baffling incongruity of moments like this.
Barely six weeks ago, the Messers were celebrating the fact that Carly — a figure skater-turned hockey player — had landed a coveted spot on a Carolina Junior Hurricanes girls team.
Today, they’re cheering her ability to slowly shuffle from one side of her hospital room to the other — with assistance — and a recent breakthrough that has her breathing for long periods of time without help from a machine.
“It was pure terror for the first two weeks. We cried a lot. We were in complete disbelief over what was happening,” says April Messer. “It still is a really bad nightmare.”
The nightmare has a name: Guillain-Barré Syndrome, a neurological disorder that is very rare (it affects only one or two people per 100,000 each year) and, in cases as severe as Carly’s, indeed resembles something out of a horror movie.
As a result, just days after receiving the happiest news of her athletic career and just days before Robby and April had planned to surprise her with a car for her 15th birthday, Carly found herself trapped inside her own body. She couldn’t move her legs or arms, she couldn’t see much, she couldn’t swallow well, couldn’t breathe on her own and — perhaps worst of all — couldn’t speak.
She literally didn’t have the words to tell her parents that she was absolutely, positively terrified.
The skater girl
Carly Messer doesn’t scare easily, though. Consider this:
Her introduction to ice-skating came when she was 5 years old, when she was invited to attend a birthday party at a local rink. April remembers her daughter holding onto her arm in a death grip as they spent what she describes as “an hour of terror on the ice.” She had every reason to assume Carly hated the activity.
It was a shock then when Carly told them after the party that she was interested in skating lessons.
Gymnastics, soccer, basketball, volleyball, none of them stuck — but skating did. Six months after she’d laced up a pair of skates for the first time, she was being recruited by a synchronized skating team at Pineville Ice House. The following summers were full of camps that allowed her to be on the ice from 8 a.m., when she was dropped off, until 5 p.m., when she was picked up.
When the “girly-girl” side of it (i.e. the hair and the makeup) grew old around age 10, she traded in her figure-skating costumes for hockey pads and sticks. She also traded in competing with other girls for competing with almost all-boys, since Pineville didn’t have enough interest to field girls teams.
The prospect of being the only girl might be intimidating for some. Didn’t bother Carly at all.
“She’d skate rings around ’em, and she would show off on purpose,” Robby Messer says. “Even though she had plenty to learn about the sport, she just loved being the best skater on the ice.”
Eventually, Carly joined a Lady Rush all-girls travel team at Extreme Ice Center in Indian Trail. Then earlier this year, as it became clear that this was a sport Carly wanted to try to play beyond her teen years, she set her sights on a tryout with the Carolina Junior Hurricanes in Raleigh — who compete at a higher level, the kinds of games that tend to attract college scouts.
On Tuesday, May 14, she got the call that she had earned a spot on a 16-and-under team.
On Wednesday, May 22, she went to an early-morning Burn Boot Camp class with her mom, to log some of the strength training her new coaches were expecting of her during the off-season.
And then, on Thursday, May 23, her body started falling apart.
A rapid decline
The cause is not clear, but her parents believe that a bout with tonsillitis in April triggered the Guillain-Barré. In most cases, it usually strikes in the wake of a respiratory or gastrointestinal viral infection, according to the National Institutes of Health.
What is clear is this: After attending her classes that Thursday, Carly came down with a headache bad enough that April took her to the Minute Clinic in the evening. The care provider, suspecting a sinus infection, sent her home with antibiotics, and April, knowing exams were coming up, started her daughter on them.
Carly went to school the next day and fell asleep in three of her classes.
That night, she complained of tingling in her fingers and toes and of a general numb feeling throughout her body. Also — and this was “the weirdest thing I’ve ever heard her say,” April says — Carly had forgotten how to cough.
On Saturday morning, April took her to the pediatrician, “and by that point, she was walking like she was drunk.” Her legs weren’t moving properly, she was stumbling. The doctor ruled out strep and mono, ordered blood work and just said to take her to the ER if things continued to get worse.
On Saturday night, Carly had a hard fall going up the stairs to her bedroom. On Sunday, her parents woke up at 6 a.m. to the sound of her taking an even harder fall out of her bed as she tried to get up to go to the bathroom.
By the time they got her to the ER, Carly couldn’t move at all, save for a little mobility in one hand.
She was transferred to Levine Children’s Hospital, where she had an endotracheal tube inserted through her mouth and into her airway; was fitted with a catheter, and given heavy-duty pain meds.
Meanwhile, caregivers tried to figure out the best way to allow her to communicate. They settled on a placard with the alphabet printed on it, allowing Carly to spell out words, very slowly, by using her one good hand to give a squeeze as someone scanned through the letters.
The next day, doctors were making tentative plans for a gastrostomy to get a feeding tube into her stomach, and toying with the idea of a tracheostomy to get a breathing tube into her windpipe.
It didn’t seem possible to her parents. At all.
“We were like, ‘Stop! She just needs a little bit more rest, and she’s gonna be OK. She’s gonna be going home in a couple days,’ ” Robby Messer says. “It was sheer denial.”
Into dark places
The good news, the Messers learned, is that most Guillain-Barré sufferers eventually recover, even from cases as severe as Carly’s.
The bad news? She wasn’t going home in a couple of days. It would be a few weeks, and possibly months.
This crushed Carly. Not only had she gone from physically active to almost completely immobile, and from chatterbox to struggling to string five words together, but she also was sinking — as her parents watched, helplessly — into a deep depression.
Says Robby, his voice cracking as he recalls crying every day with his daughter.
“She was sad about the fact that she couldn’t see her dog. She was sad about the fact that her friends were out enjoying their summer. She was sad about the fact that she couldn’t go play hockey. She was sad about the fact that she couldn’t practice driving.”
Perhaps her lowest point came on June 2, her 15th birthday.
She had a rough night leading into it, getting just a couple hours of sleep, then experienced so much discomfort and restlessness throughout the day that she wasn’t even interested in opening the gifts or cards that had been delivered for her.
There have been plenty of other bad days for Carly since then. Some were pretty brutal. Just Google “C. diff,” for instance, and consider that she contracted a miserable case of it lasting for weeks — during which she wasn’t able to get out of her bed.
There also have been plenty of bad days for her parents, who have had a front-row seat to her depression and her anxiety and her homesickness, to the terrifying effects of the Guillain-Barré as well as the agonizing effects of the C. diff infection.
Ask any parent who has had to watch their child suffer: What could be worse?
On top of that, Robby and April have for weeks now been on rotating 24-hour shifts at Carly’s bedside, tagging in and out to allow each other a break from the hospital every other day — as much for their sanity (for real food, for sunlight, for exercise) as for keeping their respective ships afloat at home and at work. As a result, however, they sometimes only see each other for 20 minutes a day.
So yes, absolutely, there have been bad days. But more and more, there have been good ones, too.
The recovery effort
Though some of them may seem like little things, they’re actually huge.
Carly mouthing “I love you, too” to her parents after almost two weeks during which her mouth wasn’t working. Carly’s hands and arms working well enough that she could hold a stylus up to her iPhone (affixed to her bedrail via a gooseneck-style holder), so she could get back to what most teenagers need to truly feel alive: SnapChat. The day the occupational therapist let Carly have water through a straw, a few small spoonfuls of applesauce and a lollipop — the first real food she’d had in close to a month.
And those things that she’s been so sad about? The Messers are working their way through them.
It’s not the same as snuggling in her bed at home with him, but her dog, Marino, was certified as an emotional support animal while Carly was in the progressive care unit. She says her blood pressure dropped after she was able to see him for the first time in the hospital.
(A vice president at Robby’s company also surprised her with a custom-made stuffed animal that looks almost exactly like Marino. In fact, the family says caregivers have come into the room and mistaken the toy for a real dog.)
It’s not the same as going to the beach or the mall or the movies, but her friends have frequently piled into cars and headed up I-77 from Fort Mill to keep her company through marathon “Mario Kart” sessions, or just some simple laughs to take her mind off things a little bit.
(And she’s made new friends, becoming so popular with caregivers that they’ve been known to let Carly coax them into “Old Town Road”-inspired dance parties and games of Cards Against Humanity.)
As for hockey, her Carolina Junior Hurricanes coach is holding her spot on the team, which she uses every day as inspiration to push a little bit harder in physical therapy.
As for driving practice, she’s buoyed by the fact that she’ll eventually get to do it in a 10-year-old, mint-condition silver BMW 328i that her parents bought before this all happened. (They revealed the surprise the day after her birthday, with a photo that she keeps near her bedside — more motivation to get out of there.)
When Carly laments to a reporter the fact that she didn’t get a birthday because of her illness, her father quickly cuts in:
“You will,” he says, squeezing his daughter’s hand. “We’ll make it up. Your coming-home party will be one for the record book.”
Closer to home
“She’s been given a tentative discharge date of July 25th,” Robby says, and this time it’s Carly who quickly cuts in.
“Sooner,” she says. Her voice is still a little weak, a little breathless, and a little distorted due to the trach mask she’s wearing over the opening in her neck to provide moisture to her airway. But she says it in no uncertain terms.
The pulmonologist and his team have just left, having showered Carly with praise over the reports of her progress and her walks back and forth across the room. The words “rock star” were used several times.
Asked what her next goal is, Carly says — again, in no uncertain terms — “Being able to stand up and hug my dad.” (Less than an hour later, during a therapy session, she did.)
She goes on to explain how she plans to walk out of the hospital without assistance when she’s finally released, as she repeatedly pulls her knees up toward her chest.
“I’m gonna keep doing this in bed” to get stronger, she says.
As if on cue, a staffer from the transitional care unit pops her head into Carly’s room and gives a wave.
“Hi! I’m the one that helps you go home,” she chirps.
Carly’s eyes widen.
She summons all the muscles she can, and pulls at the bedrail to try to prop herself up — maybe because she’s just so excited to see this woman, but more likely because she wants to show her how strong she is. That she’s going to be ready to get out of this place soon.
Robby helps her to sit all the way up, then Carly smiles at her new visitor, and says: “I already like you.”
Support for Carly Messer
To help her family, go to ca.gofundme.com/f/carly-messer
Théoden Janes: 704-358-5897, @theodenjanes