Endless Thread - Brain Melt

Episode Date: November 9, 2018

Redditor Stephanie Graham started feeling a bit off in the third trimester of her pregnancy. Then, things got weird. Really weird.

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Thank you so much for making time for us today. Yeah, no problem. I feel like you're, I'm just assumed that all doctors are busy. Why, yes, I am. How did you know? Joanna, when did you first meet Stephanie? I believe in February 2018. Okay. And how far along in her pregnancy was she at the time?

She was about 36 weeks at that point. Okay, so pretty close. Yeah, she was. What were the circumstances of you guys meeting? Well, I do rotations in the hospital on the weekends, and so I came in that weekend, and she had already been in the hospital for about, I want to say about five days. So when I saw her, she had just been extubated, which means that she had had a tube in her throat because she had had a C-section to take her baby out.

What were your first impressions? She did not look good. She was not moving that well on the right side of her body. By the time I saw her, she was barely responding to anyone. And she had a lot of family around her who were worried. When I first got into medicine, I thought that I would know the answer to everything. But the further you get into medicine, the more you realize that, you know, our tools are not as sensitive as we want them to be and we don't have as many tools as we need to answer every question. And if we can't figure it out, often we just end up watching people over time and seeing if it becomes more apparent what's going on.

Now, obviously, in Stephanie's case, she didn't have time because her brain was melting. A lot of people, even if they get treatment appropriately, do not respond. And the people who do respond, sometimes, in fact, most of the time don't get back to normal. I'm Ben Brock Johnson. I'm Amory Severson, and you're listening to Endless Thread. The show featuring stories found on Reddit. Made at WBUR, Boston's NPR station. Today's episode, Brain Melt.

We first heard this story because Stephanie posted it in Reddit's Baby Bumps community. Yep, which is where you go to post and read about all things pregnancy. Yeah, so when I wrote my story, one of the comments on my thread was, hey, you should contact this podcast. So I was like, oh, okay, I'll just throw a quick email at them and see if they're interested. We were, in part because Stephanie compared her story to something called Brain on Fire. Which was a best-selling memoir and then a Netflix movie about a woman who comes down with a mysterious, terrifying medical affliction.

The tests are saying that she is a healthy young woman. How do you explain the seizures? The truth is on that we don't know what is wrong with Susanna. Rotten tomato score, 13%. Not great. Not great. The podcast version will be better. Oh yeah.

In this story, Stephanie's own experience with Brain on Fire, comes straight from the source. It started during her pregnancy. Once I got into my third trimester, insomnia hit me. me, like almost immediately. It was very hard to sleep. I also had Restless Leg Syndrome. I don't know if you know that, but basically whenever... You had the thing that they talk about on television and doesn't seem like a real thing? Yeah. It's real. Oh, it's real. My doctor said it's Restless Leg Syndrome or RLS. Restless Leg Syndrome might seem a little

humorous, but for Stephanie, it was not. And the insomnia was becoming a bigger problem. So I stopped driving because I almost hit someone early on in my third trimester. And other things were affected, like my appetite went down big time. When you're pregnant, you're not supposed to be a danger on the road. And you're definitely not supposed to lose your appetite. Stephanie's family was getting worried. Her brother saw her one day in person and said, you look terrible, really terrible.

Have you been to a doctor? which is a funny question because when you're pregnant, you're at the doctor like all the time. But it was true that Stephanie's doctors were getting worried. Something was up. And so finally, I think it was at 34 weeks. They prescribed me Ambien. And they don't like to do that because it's not super great for the baby.

I don't think it hurts the baby, but it's not usually used. But I was kind of in a bad way. So they were like, you know, it's better for you to get sleep. One weekend, Stephanie's husband Gabe was on a camping trip. One of those last hurrah before the baby comes kinds of camping trips. Yeah, and so one of the people who had a front row seat to what was happening to Stephanie was her future sister-in-law, Andrea, who goes by Dre. So their family does something called Sunday dinner, so it's just every Sunday we get together

and have dinner, and it's Stephanie's favorite meal that's ever existed. And so I told her that I was going to come pick her up at five, and normally she'll text back. I didn't get anything back. And so I pulled in and then texted her that I was there, which we usually do. I didn't hear anything. So I went into the house and she was still in the shower. And so she just opened the door, which she would normally not do. She was in the shower.

She was a pretty private person. And I was like, oh, what day is it? And I told her it was Sunday, which was really odd. I got her into my car and we were driving. And I probably asked her 10 or 15 questions, and she didn't answer any of them. Simple questions, like, what did you do today? I just felt very odd sitting next to this. Like she felt like a complete stranger sitting, you know, a foot away from me in the car.

So it's really weird experience for me. So it was just like you were getting the silent treatment or? Oh, yeah, totally. Like she wouldn't even make eye contact with me. She was just kind of staring straight ahead. We walked in the house and I made eye contact with our sister-in-law, Tammy, and just kind of shot her this look of, I don't know what's going on with Stephanie, but something didn't feel right.

Maybe Stephanie was just mad at. about something, but when they sat down to eat dinner, things stayed weird. You know, she kept picking up her water cup, and we were just observing her kind of pick up her water cup and put it back down, and then pick it back up and put it down. She kept putting it on her plate, though, so just like really odd behavior for her, wasn't really answering questions, and so they decided to take her to the emergency room. That's kind of where all of this started. When they got to the hospital, Stephanie and her family went through the

rounds. She continued to act strange, distant, unresponsive. At some point, husband Gabe returns from the camping trip and goes straight to the hospital. The doctors could see something is fundamentally not right, and Stephanie is pregnant, like full term pregnant, and she is not coherent. The doctors are worried, but they can't figure out what is wrong with her. None of the normal checkup stuff is working. So they decide to scan her brain. Do you remember the MRI? So I remember some of it. I have a lot of piercings. They made me take out all my piercings, which I was kind of bummed about. And then once I went into the MRI, Gabe couldn't go with me. I remember them telling him that he couldn't go with me. And that kind of made me sad.

And the lady operating it was trying to get me to stop moving. But it's like I had wrestling. leg syndrome, so I couldn't stop moving my legs. And so I started crying. And the last thing I remember is her saying, if you don't stop moving, we're going to have to start this over again. And then I black out. I don't remember anything after that for the next two weeks. More in a minute.

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When Stephanie arrived at the hospital, she'd gone through a barrage of tests, and each test had her family and her doctors more worried, because the The doctors kept striking out. Nothing in the usual toolbox was working. Their process of elimination wasn't finding anything. As things got more dire, the tests they ran got more serious. And the last one, an MRI, is the beginning, the ragged edge of this massive hole in Stephanie's memory, a hole that stretches over two weeks of her life. So for this, we're going to go back to her neurologist, Joanna O'Leary, who, like any good doctor, was checking off those boxes of things that it wasn't. She had already had an MRI of her brain, so we already knew that she didn't have a stroke,

because an MRI should tell us that information. Got it. And she had a lumbar puncture, which is a spinal tap. That's where they put a long needle into her spine and take out spinal fluid and evaluate to see if she had infection or anything else to point us in a different direction. She had had all of that done already when I saw her, and everything was negative. This is when Dr. O'Leary got an idea. When all of these kinds of tests come back negative, but the patient is acting incredibly strange, like a totally different person, sometimes they have one of the more mysterious, serious afflictions in the current medical lexicon,

autoimmune encephalitis. Is this a bacterial infection? Is it a virus? Do you have any sense of the root causes of this sort of thing? Or is it just kind of this like ghost that shows up in people's systems sometimes and sends them haywire? Yeah, it's probably more the latter. This is why Dr. O'Leary still isn't positive that this is what Stephanie had. It's a known disease, but it's got mysterious origins and it's hard to identify.

Sometimes people who have it seem more like they've tumbled into some kind of psychosis. And this presents a problem. for doctors like Joanna, the problem of talking to the patient's family. The one thing the family wants is answers, a light at the end of the tunnel. And that's the one thing she doesn't have. What she does have to say isn't good. You know, I think it was just difficult talking to her husband because I did tell him there was a good chance she wouldn't go back to normal. And that's a scary conversation to have with someone. How do you have it? I try to be as honest with someone as I can be without being harsh.

But I think it's important that people know the facts. At some point, Stephanie's doctors decide her baby has to come out. So they opt to do a C-section. I think one of the reasons she had the C-section was a question of, you know, first, is it going to affect her baby? Would it affect the baby? Would the antibodies attack the baby? Another reason is that in this moment that we picture a mother being,

laser focused on, this job of giving birth, a job that thousands of years of evolution has prepared her to do, the real Stephanie is nowhere to be found. She was conscious for it, technically. Do you remember your childbirth at all? No. Not at all. How do you feel about that? Well, on one hand, I'm happy because I think a C-section is...

pretty traumatic. But also, I don't remember the first week of my child's life, so that makes me sad. You know? Yeah. So it's good and it's bad. Even after the tough birth, though, mom was far from out of the woods. So they put the baby in my arms, and I held her for maybe 10 seconds. And I think my husband asked me, how are you feeling? How are you feeling? doing and I said I'm I'm actually feeling very overwhelmed or something to that effect um can you take

the baby and so he took the baby and maybe two seconds after that I had a seizure luckily the anesthesiologist was there so they put me under immediately to stop the seizure but when they brought me back out when I woke up my whole right side was basically paralyzed like I couldn't move my right leg or my right arm or anything like that. I couldn't swallow. So they had to put a breathing tube down my throat. Zero memories from those two weeks. From what people tell me, I would sometimes respond to them

with like one-word answers or grunts. But there was a lot of the time that I didn't talk at all and didn't make any noise. But my eyes were open and I was conscious. Technically conscious, yes, but a lot of the story from Stephanie's two-week blackout is pieced together from the people who watch Stephanie go through it, like her future sister-in-law, Dre.

So I think the scariest part for myself at least was just the several days when she was in the neurocare unit because it didn't seem like she was getting any better. On top of that, she's hooked up to all these machines. She has a feeding tube. She was making some pretty terrible noise. So it was, I mean, like, there was a point I think all the siblings broke down while she was in there, just kind of thinking, like, is she even going to, you know, come out of this and be the Stephanie that we, you know, love and want to see again?

And so that was really frustrating for all of us that we didn't have any answers. At one point, the doctors suggest a brain biopsy, which is pretty much what you might imagine it to be. It involves a drill and your skull and scooping a chunk of brain out of your skull to run tests on it. Luckily, my husband said absolutely not. No way. I'm not letting you do that. Wow. Yeah. How come? Well, he knows me. And, I mean, my brain is, that's what I live on. I went to school for engineering. I was an engineer. Now I'm a supply chain manager.

And I think he knew that I didn't want to compromise any kind of brain power that I have. Even though, like, that would probably give us a definitive answer of what's going on, he said, no way. The good news is that once Dr. O'Leary and some of the other caregivers at least had a mysterious affliction to attach to Stephanie's symptoms, they could try to treat it. Autoimmune encephalitis means a couple of things. It means your brain is swelling. And the reason is that a bunch of antibodies, those blood proteins that pop up to fight off anything

that appears to be alien in your body, are, for strange reasons attacking your own brain, the parts of your brain that allow you to regulate your breathing and to collect and store new memories, which is crazy to think about, that the part of your brain that says that just happened and then remembers that thing that just happened can be short-circuited by this. And that explains Stephanie's two-week blackout. Back to Dr. O'Leary. So we decided to treat her with steroids, which calms down the immune system, and something called IVIG, which is a medication that you put into the blood

that takes away the antibodies so that they're no longer attacking the nervous system. Some combination of the treatments and the mysterious forces of the body we have yet to fully understand started to finally bring Stephanie back out of the woods. What do you remember about waking up? Was it daytime?

Do you literally remember like opening your eyes? and seeing like the curtain. No. No, it wasn't like that. It started out as these dreams that I now come to realize were actually real. So one of them was me trying to escape the hospital. It started out as a dream.

I was going into this building to, like, call somebody, and it turns out to be the hospital. And now I'm stuck in the hospital trying to get out, asking the nurses, where's the exit? and they're leading me back to my room. And I'm like, no, I'm not supposed to be here. But then one of my sister-in-law, Mindy, comes out of my room.

And she's like, oh, there you are. And I'm like, what are you doing here? These waking dreams Stephanie was having were starting to blur, moving more into memories of reality. Her family had been trying anything and everything they could to jar her back into a normal existence. They would show me pictures all the time. Do you know who this is?

You know, they'd show me pictures. And it would be a picture of me and Gabe. And I'd say, no, I don't know anyone in that picture, you know. And they'd show me a family. So it feels like work, you're saying. Yeah, like you're looking at them and you're like, okay, do I know anyone? Like, I'm reaching, I'm searching, like any kind of memory. And you're just like, I'm coming up blank.

I got nothing. And then all of a sudden, like, one of my brothers would walk into the hospital room and I'd be like, Brian, I know you. And, like, suddenly I remember everything about Brian. Her siblings had a text thread they named the freelance neurological care unit, where they would post ideas and webmd links and update each other. At some point, the scary webmd links started to move into more positive updates. She even, like, shot us kind of like a sassy look.

all, oh my gosh. We got the stink eye from her, so it's kind of fun seeing her personality come back. Eventually, Stephanie came back enough into the real world to start therapy, where people like Dr. O'Leary would test her basic physical and cognitive abilities. The exam's very long, but you make sure that someone can, for example, draw a clock and put in the right time and recall words that you give them to remember. and, you know, be able to count backward by seven. Why seven? Because it's a really hard number to subtract by?

You can do it more easily by most other numbers, but that one's more challenging. And what was really strange, unusual even, for doctors that have seen it all, was that as the days and months went on, Stephanie passed these tests with flying colors. The doctors were shocked at her performance. How unusual is Stephanie's story?

I think her full recovery is the most remarkable thing about it. Could she relapse? We don't know. There's no way to really know that because we don't know absolutely the cause of her symptoms. I will say that she had told me at some point that she had decided not to have any more kids, probably, in the future, because there is a risk that maybe this was in some way related to her pregnancy and it could happen again. Is there anything everyday people can learn from her story? No, I think just make sure you give the people you love big hugs all the time.

That's a good takeaway. I'll agree with that. Yeah. How is your daughter doing? She's great. She's seven and a half months and she's perfect. She's a great baby. I feel like we won the baby lottery because she's already sleeping through the night.

She's amazing. She got that from her dad apparently. Yeah. Well, speaking of her dad, has this changed, your marriage at all? Has it sparked any kind of difficult conversations about the future, having gone through something this intense? Well, I mean, we definitely value our together time a little bit more. Like, we make sure that we take time for each other and make sure we are all about each other as well as all about the baby. I think that's really important. It is kind of

crazy. Even though I didn't know who Gabe was when I woke up, it's like I always cried when he left. It's like even though I didn't, I had zero memories of him. I didn't know. I was really surprised when I found out we were married. Yeah, what was that moment like? Yeah, he told me and I said, we're together? And he's like, yeah, am I hot enough? And I was like, oh, yeah. Oh, I'm glad that it was that reaction. Yeah, yeah. I was like, risky, man. But, yeah. Everyone was nervous for her response to that. Yeah.

So, I mean, it's crazy. I mean, we have such a deep connection that I'm really, really thankful for. And I'm glad that he's my husband. I'm glad he's hot enough. Yeah, that's good. Yeah. Healthy baby, hot husband, great life. Yeah.

Endless Thread is a production of WBUR, Boston's NPR station, in partnership with Reddit. Our show is a dream, Realize. by Jessica Alpert, and if Netflix made a movie about her, it would be called When the water flows over the milk jug at just the right angle to create a bubble. Iris Adler is our executive producer, and when she heard

Stephanie's story, she was like, That happened. Mixed in sound design by Paul Vicus and John Parati, and their brains melt when they think about tripping through time. Our web producer is Megan Kelly, and after listening to this episode, she's a little concerned about her. Skincare addiction.

Michael Pope is our advisor at Reddit, who describes people from Portland, Oregon as... Real-life doodles. Whenever our producer Josh Swartz has a bad case of the Restless Legs Syndrome, he looks up... Old Ladies Baking Pies. Extra production assistance from James Lindberg. Our intern is Candace Lim.

Woo-hoo! Thanks to Redditor Elise Wong creations for this week's artwork. It is called Two Ashes. On Reddit, we are endless underscore thread. If you want to contribute art for an upcoming episode or give us a juicy story tip so we can tell it like we did today, hit us up there. By the way, when you visit us, make sure you follow our profile.

It helps us stay in touch with you. My co-host and producer is Amory Sievertson. I'm senior producer and host Ben Brock Johnson. I'll let myself out.