‘Caitlin Can’t Remember’ N.C. teen going through life with anterograde amnesia after sports accident

Posted at 8:15 PM, Feb 25, 2019
and last updated 2019-05-16 23:28:23-04

GREENSBORO, N.C. (WGHP) - Caitlin Little was always athletic and precocious.

“Caitlin started walking at 7 months old, running at 8 months old,” her mother Jennifer told FOX 8. “So, Caitlin doesn't sit around waiting for anything.”

Caitlin was part of Southeast Guilford High School’s cross country program, and it was there that everything changed.

“Thursday, 5 p.m., Oct. 12, 2017,” said Jennifer, with a smile that denotes so much sadness. “Pretty easy to remember.”

That was the day at practice when someone stumbled and hit Caitlin in the head, leaving her with a concussion that lasted far longer than anyone – even the doctors who examined her – thought it would.

Caitlin Little

“(The neurologist) called what he recommended, ‘cocooning,’” her father Chris said. “Cocoon her, protect her from anything very stimulating that might induce more headaches. He said, 'Well, OK, this looks pretty bad. But, in my experience,' he said, '90 percent of these resolve themselves in three weeks.'”

“That was the magic number, three weeks,” Jennifer said. “We just need to make it to three weeks.”

But three weeks passed and then three months. She wasn’t getting better. And now, 16 months after the incident, Caitlin can remember most of what happens on any given day, but her brain resets overnight and, each morning, she wakes up with no memory of the day before.

Yes, like the movie, “50 First Dates.” Only, a happy ending could be written for the movie. For Caitlin and her family, this is real life.

So, for the last nearly 500 days, her father wakes her up each morning and tells her what day it is and what happened all those months ago that robbed her of her memory.

“I'm always afraid that she's going to jump out of bed and tell me, 'It's wrong' and, 'It can't be.' And, why am I lying to her? So I'm always very hesitant every day when I do it, but it's my job. I have to tell her,” her dad said.

When asked if Caitlin has ever pushed back, he said, “The most that she's ever done is act very, very surprised. Or say something like, 'How can that be?' And when she does that, I explained to her that she has a journal. It's on her desk. She has Post-It Notes, read those and if she has any questions, come and see me in 15, 20 minutes.”

And when asked if it's heartbreaking every morning?

“Every time.”

Episode 2

How do you navigate a world that is always changing when your knowledge of it can’t?

Caitlin Little was mastering her world until one day, during her freshman year at Southeast Guilford High School, a cross country teammate accidentally hit her in the side of the head, leaving Caitlin with a traumatic brain injury deep enough that, to this day, her brain resets each night and she has no memory of the day before.

“When she first got hurt, we were OK with it because everybody was like, 'Oh, yeah, two weeks, you're good,'” her mom, Jennifer Little, told FOX 8. “And then I was told three weeks is that critical moment - if she's not better in three weeks, you're in for the long haul. And three weeks passed and we weren't better.”

She did get better over the first six months, but she has been stuck at that level since April 2018 and has had to develop ways to cope in a world that changes while her memory can’t add new information.

“[I have to be] very organized. So I have lots of Post-It notes that say, ‘Hey, let's do this,’ or, ‘This is new,’ or things to help me out. So, it's not as hard as I'd imagine it'd be without them,” Caitlin said.

Because of her condition, Caitlin wakes up each morning thinking it’s Oct. 13, 2017 - the day after the accident.

“Hey, sweetheart,” says her dad, Chris, softly, each morning. And then he has to break the news, “You got hit on the head during cross country practice and you’ve been out of things for a while.”

It's an odd thing for anyone to hear.

“I get plagued by confusion most often, wanting to know, ‘Well, how did that happen?’” Caitlin said. But she finds a way to understand and move on.

Episode 3

There are few things so universal as a parent wanting a good education for their child.

And into her freshman year at Southeast Guilford High School, Chris and Jennifer Little had their second child, Caitlin, right on track.

“She was breezing by in class, she would always participate in class, her assignments were on point," Kenya Jenkins, one of her teachers, told FOX8. “Caitlin - she was so phenomenal before the accident.”

"The accident."

That was in October of Caitlin’s freshman year. She got hit in the head accidentally by another runner at cross country practice one day, resulting in anterograde amnesia.

After trying to rest for three weeks or so, her parents thought trying to regain her routine might help, so, on the advice of doctors, Caitlin returned to classes. But, from the beginning, her parents understood it might be futile.

“Everything she's doing in school - she's going through the motions of school and that's great, she wants to do it, she wants to perform but the next day, it's a complete reset, a blank slate,” her father Chris said.

“Generally, you thought, ‘Well, OK, we've dealt with these, before,’” said Southeast Guilford Principal Mark Seagraves.

The school has done everything it can possibly think to do to assist Caitlin. Not just all of her teachers, but the administrative staff and others meet regularly and go well out of their way to ensure she has the best chance to succeed.

But not everything has gone as they had hoped.

"Twenty-three years in the business, I'm not sure I've seen anything or experienced anything like this, before,” Seagraves said.

Among those assigned to help Caitlin is Tracy Helms, a special education teacher assistant whose picture – just like all of Caitlin's other teachers and helpers – is in Caitlin’s main binder, with a description of who they are. Helms says, simply, “Your buddy.”

Helms helps Caitlin get where she needs to go and do what she has to do. But, even though Caitlin has met Helms every school day this past year and a half, each morning when Caitlin sees her, it’s like she’s seeing her for the first time.

WGHP asked Helms what it’s like repeating that every day.

"Every day. Every day,” she says, with heartbreak in her voice. “I come in and meet her and she doesn't know who I am. Every day, she doesn't know where her seat is in this class; she doesn't know who her teacher is. Every day is fresh and new to her, just like it's never been seen before.”

Episode 4

It’s safe to say Caitlin Little was a precocious little girl.

“Caitlin started walking at 7 months old, running at 8 months old. So, Caitlin doesn't sit around waiting for anything,” remembers her mother Jennifer Little.

And when events change your life, you tend to remember exactly when they happened.

“Thursday, 5 p.m., Oct. 12, 2017,” Jennifer Little told FOX8. “Pretty easy to remember.”

That’s the when everything changed for the entire Little family.

Their daughter, Caitlin, was a freshmen cross country athlete at Southeast Guilford High School that fall. She was at practice, on Oct. 12, 2017, when, as the story is told by several people who were there, some kids were goofing around and one kid got shoved and hit Caitlin in the temple giving Caitlin a concussion.

They were told – as almost every concussion patient is – that it will take time to heal.

“The sense was, well, if we hit a certain time period, then it will be almost like a light switch and all these memories will be back, she’s going to understand what happened, she’d go back to where she was,” said John Woods, a close friend of the family. “And the longer that went, the further out the projection was of how long it was going to take before that light switch was flipped and it just hasn’t happened.”

Sixteen months after her accident, Caitlin still suffers from anterograde amnesia, a condition in which she can remember not just what happened before her accident, but what happens on any given day -- until she goes to sleep and her brain resets overnight, and she wakes up with no memory of the day before.

It’s her father’s job to wake her up, each morning and let her know what happened -- that it’s 16 months later and plenty has happened that she can’t remember.

"I'm always afraid that she's going to jump out of bed and tell me, 'It's wrong' and 'It can't be.' And why am I lying to her?” Chris Little said. “So I'm always very hesitant every day when I do it, but it's my job. I have to tell her.”

Episode 5

When Caitlin Little got hit on the head in cross country practice, every medical professional who saw her felt she just needed time to rest and she would heal.

The initial diagnosis was about three weeks – it would take three weeks and the symptoms would dissipate and she would slowly return to her old self.

“I realized when we were at the six-month point and she hadn’t really improved much, from that point forward, we were on our own,” her father, Chris Little, told FOX8.

They saw a series of neurologists, including reaching out to some who were out-of-state.

“There was one doctor who runs a concussion clinic in Virginia who contacted us and he said, 'I heard about the case online. I want to help you. We deal with concussions, send us the diagnostics, the imaging that you have about our case,'” remembers Chris, of his contact with the doctor last summer. “And we sent that and he sent back something else saying, 'I'm sorry I can't help you. I've never seen anything like this.'”

As hard as that was to hear, Chris said, “He was honest.”

Chris and Caitlin’s mom, Jennifer, say some doctors hinted that this may be a case where Caitlin simply doesn’t want to remember.

Jennifer doesn’t buy it.

“You know, her whole history showed that she is a goal setter and wants to have, achieve, reach her goals and achieve things,” she said. “This went completely opposite of what she would want. The child wouldn't want to give up all her friends and relationships.”

When this went on for more than a year – no one able to provide answers and some, in the Littles’ minds, not even trying to – they began to realize they too made a mistake early on after Caitlin’s injury.

“I know that I learned a valuable lesson and that is, if I think there's something really wrong with my child, I'm going to fight and push a lot harder,” Jennifer said.

In the meantime, the had planted the seeds of doubt in Chris and Jennifer’s minds: What if she really was faking this?

Episode 6 

As FOX8 has been telling the story of Caitlin Little, many people have contacted them to ask, “How can this happen? How can someone remember things all day and then have that memory erased overnight?”

Chris and Jennifer Little, Caitlin’s parents, had the same question. But what they learned was much of medical science had no answers. Caitlin took a hard knock on her head in October 2017 while she was running at cross country practice and was diagnosed with a concussion, but nothing more. All the doctors and trainers said three weeks of rest should heal her, as it does most concussions.

“We passed that three-week point; nothing had changed,” Jennifer said. They asked a neurologist in their hometown if he could do a brain scan. “And so he said, 'Fine, they won't find anything but I'll sign you up for that.' So, November 14, we did an EEG. It came back normal,” Jennifer remembered.

Several doctors seemed to think Caitlin’s brain was not the issue. Stress, anxiety and a strong enough desire to remember, those doctors said, was the real cause of her issues.

“It was the first time we started doubting; 'Is Caitlin faking this? Is Caitlin tricking us? Are we missing something?'” Jennifer said. “And that was a horrible feeling because all we wanted to do is get her better and now we're having these second thoughts and setting up sort of tests for her to see, is somehow, is she doing this, is she controlling this?”

But it got Chris thinking.

“I was willing to entertain the notion that the doctor at Duke said that, 'Well, maybe she just doesn't want to remember or she isn't remembering,'” Chris said. “So, I kind of set up little tests. I would misplace things to see if she'd remember where they were. I would talk to her about things and then ask her about them, later. Do anything I could because I hoped there was somehow, some way that this was something that she had control of, because that would've been the best outcome - because we can fix that. But I never, in the 15 months, have ever saw her remember something from a prior day, not even one time.”

That didn’t answer their questions as to why Caitlin’s memory was resetting each night.

FOX8 sat down with Dr. Dan Kaufer, who runs the Memory Loss Clinic at UNC-Chapel Hill. He hasn’t examined Caitlin but was able to tell them about memory loss in general.

"Memories aren't so much stored in a certain part of the brain as they are recreated. When we lay down a memory, we're laying down a pattern that's associated with electrical signals and chemical processes that occur, oftentimes, while we're sleeping through a process called consolidation,” Dr. Kaufer said. “Now when we're trying to remember something, it's not so much that we're looking at the address in their brain of where the memory is as it is. We're actually creating the pattern of electrical and chemical activity that laid down the memory in the first place. So, in fact, we're not remembering something as much as we are recreating the memory trace of what happened. That suggests that the source of her problem, maybe with the sleep-mediated consolidation process, which lays down the memory traces that we accumulate during the day and packages them into a more long-term memory store.”

Episode 7

If your child were in the situation in life that Caitlin Little is, chances are, they’d be very upset about it.

Caitlin was hit on the head during a cross country practice in October 2017. The traumatic brain injury it caused left her with a version of amnesia where she can’t remember the previous day – she can’t remember any day since the accident – so she is, effectively, stuck in that time and place from when she was still 14.

Her parents, Chris and Jennifer, have been there every stop of the way, trying anything and everything to help Caitlin heal – including a little humor to simply clear the black clouds of emotion this has created over their entire family.

“We've joked around if any of our children had to have it, this is the one that we needed it to be because any of the others we would need to be committed because it wouldn't be so emotional, and they would fight. They would be very angry,” Jennifer told FOX8.

But when you spend time around Caitlin, you notice Jennifer is right. Sure, it’s tough on her – you can see she struggles to deal with her situation. Anyone would. But she doesn’t burden those around her with her struggle.

“She doesn't get angry at things,” Jennifer said. “She tries to find the good and she tries to find the way to succeed, and I believe that's what you see are doing every morning.”

There are, though, inevitable questions.

“We're not going to be here forever,” Chris said. “So that has been weighing on my mind a lot.”

What is helping the family cope is that attitude that Caitlin brings to her fight and how her whole family is on board.

“When she gets close to wanting to give up, this family pitches in to remind her why we're not,” Jennifer said. “She is in there, she is ready to come back to her life. She wants to do these things and she may end up having to do things differently than her plan, but I think she'll do them differently, bigger and better than her original plan.”

GoFundMe has been set up to help the Little family.