Binti Lee Will Never Speak the Same After a Houston Hospital Misdiagnosed Her Stroke
Photos by Max Burkhalter
The words were gone. She had no memory of falling. Binti Lee's boyfriend, Andre Brown, then 30, was in the other room when he heard the thump, a dull, heavy sound -- like a lead weight hitting the floor. Brown walked into the living room and saw Lee, then 34, slumped on her right side, wedged between the couch and the narrow walkway in their small living room.
"Stop being silly and get up," he said, reaching for her, but Lee didn't move.
Her brown eyes were open and he could see the panic on her face, but she couldn't speak and she couldn't lift herself off the floor. Brown bent over and tried to pick her up. At 5'4" and 145 pounds, Lee was small but dense. His muscles strained under all of his tattoos, but he couldn't do more than move her a foot or so.
A slick jolt of adrenaline rushed through Brown's veins and his heart thwacked in his chest as he grabbed his phone and, struggling to keep his voice level, told the emergency dispatcher that his girlfriend had collapsed.
"Is she awake?" the woman asked, clicking information into a computer as she spoke.
"She's awake, but, but she can't verbalize anything. I don't know what's wrong," Brown said, voice shaking.
The ambulance arrived at their apartment on Allen Parkway within ten minutes and a bevy of EMTs gathered around Lee, asking her questions and ignoring Brown. They loaded Lee onto a stretcher and carried her out the door as Brown called for them to wait while he pulled on a shirt and grabbed her purse. He put on the first thing he could find, a muscle shirt, and ran out to the street, Lee's purse in hand, but they were gone.
By the time Brown tracked her down, Lee was in the emergency department at Houston Methodist Hospital in the Texas Medical Center with doctors clustered around her bed. Brown studied her face. His stomach twisted when he saw her eyes, flat and blank. "She was just gone," he says now. "She wasn't there." Her hair was a mess, and her face looked drawn and washed-out. Drool trickled out of the right side of her mouth. Brown stepped past the doctors and wiped it away, and then he started asking questions.
The doctors took him in, a tall, lanky African-American, wearing sweats and covered in tattoos. Brown sucked in a deep breath, willing himself to stay calm, to treat these men the way he had learned to deal with argumentative parents when they came into his second-grade classroom to discuss their children. It seemed crazy because Lee was young and in good shape, but he'd seen the same thing happen to his great-uncle. "Could she be having a stroke?" he said.
Lee had difficulty speaking, though she managed to say yes or no to some questions. She couldn't use the right side of her body, and the right side of her face was drooping. But she was not having a stroke, the doctors said. She was having a psychogenic reaction, and her symptoms were physical manifestations of mental duress.
Lee was prescribed 50 mg tablets of Zoloft, a drug typically used to treat depression, and advised to seek psychiatric help. The CT of her head showed something -- a shadow -- on the left side of her brain, according to her medical records. The cloudy image wasn't cancer, but she was advised to seek medical attention for that as well.
The doctors rattled off their opinions on the matter, but something didn't sit right with Brown. Lee wasn't depressed; she didn't have any history of mental problems, he explained. She was a smart, busy woman who was working a full-time job at a title company and going to school to get her bachelor's degree in accounting. She was focused on school, so they didn't party or go out much. Lee and Brown liked to work out together, and she was in the best shape of her life. The diagnosis didn't make sense, he said.
The doctors dismissed his concerns. Lee seemed to be asleep, so they stepped into the hall. "My colleague has concluded it's a psychogenic reaction," a man in a tie told Brown. Brown started yelling. A security guard appeared at his elbow. "You'd best calm down, son," the man said. Brown strode down the hallway, grabbed a wheelchair and rolled it into Lee's room.
She couldn't stand up on her own -- she started to fall back toward the narrow hospital bed as he got her to her feet and would have slipped and hit the linoleum floor if a nurse hadn't stepped in and hoisted her into the chair. She was formally discharged by 12:45 a.m., and the couple pulled up to the entrance of their apartment at just after 1 a.m after spending almost four hours being told it was all in Lee's mind.
It was a foggy night, and a steady mist of rain left the street and sidewalk slick and glittering under the streetlight. Brown pulled Lee out of the car and shifted so he could get a good hold on her. She tried to walk, but half her body was useless. As they shuffled forward, the full deadweight of her body shifted onto him and they both slipped and fell in the mud. Brown felt the mucky grit on his face and absently wiped at it with his hands, not even bothering to get up. The doctors at Methodist were trained professionals and they knew what they were doing, he told himself, but he couldn't shake the heavy feeling in his gut. Lee started laughing, peels of laughter, and Brown laughed, too.
Less than 36 hours later, at a different hospital, a doctor looked at Lee and confirmed in 40 minutes that she'd had a stroke.
A stroke from which she most likely would have made a full recovery if she'd received immediate treatment at the first ER.
Binti Lee and Andre Brown have been using aphasia workbooks in an effort to help Lee recover her speech since she suffered an ischemic stroke in Decemeber 2012.
From the time she was two years old, Binti Lee could always make herself understood. As a child growing up in San Diego, she devoured every book she could get her hands on, and she was so articulate that school officials recommended she skip kindergarten entirely. She was good at presenting herself to people, at conveying exactly what she meant. But she couldn't speak for herself on December 16, 2012.
It started with a tiny bundle of platelets and proteins lodged in her right leg. Lee began vomiting at about noon, violently retching and straining for hours. The vomiting may have loosened the blood clot, sending it sailing through her system until it lodged in the left side of her brain.
Brown called Lee's family in San Diego to let them know what was going on. Mae Lee, Binti Lee's mother, got the emergency-room doctor, Dr. Jack Nuszen, on the phone. Lee's family has no history of stroke, but Mae Lee has seen friends go through it, and she knew the symptoms. This sounded like a stroke, she told Nuszen. Nuszen said her daughter was going to be fine. He was calling in a neurologist, but the initial tests showed it wasn't a stroke. But she can't speak, Mae Lee said. "Even then I thought he had a rather nonchalant, cavalier attitude," Mae Lee says. "He made it sound like this was nothing, like she'd be talking by -morning."
Ischemic strokes are the most common type, making up more than 80 percent of the strokes that are diagnosed each year. Sometimes there are warning signs, transient ischemic attacks, also known as "ministrokes," in which a clot briefly gets stuck in the brain, mimicking the symptoms but dissolving on its own. Other times, there is no warning.
Once a clot has lodged in the brain, time is of the essence. There is a drug -- tissue plasminogen activator -- that was approved by the FDA in 1996. tPA, as it is commonly known, is a clot buster that dissolves the knot of platelets and proteins clogging an artery, returning blood flow to oxygen-starved cells. However, there is a relatively small window of time within which the drug can be administered. Studies have shown that patients have from three to four and a half hours after the first moments in which stroke symptoms appear to receive tPA. Past that point, the blood-deprived tissue is no longer viable, and the risks of administering the drug outweigh any potential benefits.
In 2008 Methodist Hospital became the first certified comprehensive stroke center in the United States. As such, Methodist is supposed to offer access to the best care for patients with the most severe forms of stroke, including ready access to tPA. However, both comprehensive and primary stroke center certifications are focused on the structure of the hospital and the treatments offered, not diagnostic skill, according to Dr. David Newman-Toker, an associate professor at Johns Hopkins School of Medicine. "There's no emphasis placed on diagnostics at all. This is a huge problem in the medical community," he says. "The whole system is about fixing known problems, not about figuring out what those problems are."
Binti Lee's case is unusual, Newman-Toker says, because her symptoms were a classic presentation of stroke. "She had the symptoms that probably triggered the idea of stroke in all of her physicians. They dismissed it, but it wasn't likely that they didn't think about it," he says. Still, he notes, Lee was at the best possible place to treat a stroke, but she wasn't necessarily at the best place to be properly diagnosed. She collapsed at about 8:35 p.m., was taken to the hospital by ambulance at 9:12 p.m. and was seen by a neurologist about 30 minutes later. Time should have been on her side. But there was a complication.
Diagnosing people correctly is as much an art as it is a science, Newman-Toker says. He has been studying the problems of misdiagnosis since his days as a medical resident at a Boston hospital in the 1990s. "I saw a lot of tragic misdiagnoses," he says. An 18-year-old aspiring Olympic skater was brought in with some weakness on her right side after she fell while skiing. She was diagnosed with migraine and sent home. By the time she returned to the hospital six days later, the entire left side of her brain was compromised. "It was a treatable condition, but she was left barely able to walk with a cane, she couldn't use her left arm and had massive personality changes. It was a life-altering event that could have been prevented."
In April Newman-Toker published the results of a study that found that women, minorities and young people are all more likely to be misdiagnosed when they go to an ER with a stroke. Young people's symptoms are more likely to be missed because stroke is thought of as a disease of the elderly. Women's symptoms are more likely to be ascribed to psychiatric problems, and African--Americans tend to have their symptoms attributed to drug use, Newman-Toker says.
The reasons this happens are complex. For one thing, emergency-room doctors lean heavily on CT scans, even though evidence of an ischemic stroke often doesn't show up in a CT scan in the first 24 hours. Doctors have a misplaced faith in the test, he says. "They think they are ruling stroke out with a CT scan, but they're in fact falsely reassuring themselves and the patient. That reassurance then gives them license to explore alternative causes." In modern medicine, doctors rely on tests and technology, sometimes to the detriment of the more nuanced clinical skill of -diagnosis. Doctors who don't train as neurologists aren't as likely to recognize the signs of neurological diseases, like stroke, when the symptoms aren't obvious. There's also a problem, especially in less experienced doctors, of bias. "You get a fixed belief and then you get so stuck on that idea you look for puzzle pieces that will confirm your diagnosis and ignore the ones that don't," he says.
Lee couldn't give her own medical history, so Brown told of how they had stopped at two Christmas parties the night before. He mentioned that Lee had some drinks and smoked a joint being passed around. Dr. Jason Thonhoff, a newly minted doctor only five months into his neurology residency at Methodist, zeroed in on the marijuana use in his notes. "The patient's boyfriend reports that she smokes marijuana daily and occasionally consumes alcohol," Thonhoff reported. "Most of the history was obtained from the patient's boyfriend as the patient is mostly uncooperative with the history and physical examination," Thonhoff noted, according to Lee's medical records. "The patient's boyfriend denies that the patient uses any other illicit drugs."
Lee was already unable to stand by the time she saw Thonhoff, but he stated that "the patient refuses to stand" in his notes. "This is a 34-year-old woman with an unknown past medical history who presents with lack of speech and inability to walk. Based on history and physical exam, the patient is not experiencing a clinical stroke. tPA was not administered because this is not a clinical stroke and the patient's exam is very inconsistent and variable. At this time, we recommend obtaining a urine drug screen," Thonhoff concluded.
"The trouble with health care is a lot of the time when you hear drugs or alcohol and put that with mental health, you tend to think, 'Oh, drug addict,' and then you develop these glasses, this way of seeing, and that's how you see them," says Patrick Bordnick, a professor who specializes in behavioral studies at the University of Houston.
Over the years, Bordnick has worked with doctors and medical students to teach them about the dangers of preconceived notions, ways of interpreting people and situations that may cause doctors to miss something or draw the wrong conclusion. "It's not necessarily someone being remiss. It's that you know what you know," he says. Judging people is dangerous when you're in the medical profession because not standing back, taking off those glasses and making an effort to see the whole person can lead to problems, he says. "We need to objectively step back and realize we all have some sort of bias."
Dr. John Volpi, a fully trained neurologist, never actually saw Binti Lee, but he was consulted by phone and signed off on Thonhoff's plan. Nuszen, the ER doctor who had originally asked for a neurology consultation, didn't object, according to the records. Thonhoff reviewed Lee's CT results. A CT scan doesn't always pick up the initial signs of a stroke -- for that you need an MRI -- but even then, something showed on Lee's CT, a "soft tissue density mass 1.2 cm in size in the upper left orbit," according to Thonhoff.
The drug screening of her urine registered positive for marijuana but was otherwise clean. Thonhoff sent her home.
After waiting 24 hours, Binti Lee wasn't any better. She slept constantly and was so weak she couldn't walk to the bathroom. Brown laid down layers of trash bags on the bed and on the floor for when they didn't make it to the toilet.
When Lee arrived at Memorial Hermann Memorial City Medical Center on Tuesday morning, the marijuana was briefly mentioned, but the doctors didn't focus on it. Dr. Shahin Tavackoli, a cardiologist, diagnosed stroke as soon as he saw Lee's drooping face and noted that she could barely speak, had almost no control on the right side of her body and held her right hand in a claw shape.
Tavackoli, who spoke to the Houston Press about his patient with her consent, notes that he has no way of knowing for certain what her condition was in those first hours after the stroke, but he was horrified that she'd gone so long without proper treatment. "If her presentation was at all similar to what it was at Memorial City, then they missed it. She was young and could have probably made a full recovery. It made me angry," he says. "I would never have sent her home in that condition. I don't know what happened at Methodist."
The doctors on her Memorial Hermann medical team repeatedly noted in her medical records that Lee had been seen by the doctors at Methodist and sent away with a prescription for Zoloft. The frustration even bled through the cool, clinical language of medical records. "Ms. Lee is a 34-year-old lady with essentially no past medical history who takes birth control pills," Tavackoli writes. "Unfortunately, presently she is out of the window for thrombolysis [breaking down blood clots with a medication such as tPA], whereas she was very much within the window for thrombolysis when she went to Methodist on Sunday night."
Get a lawyer, one doctor told Brown.
In the first days after the stroke, Binti Lee pressed her ear to her dad's cell phone and tried to speak to her mother -- her voice could only make a small childlike bleat. "It was the same sound she used to make as a baby. It wasn't much, but I was so thankful to hear it," Mae Lee says.
In the days and weeks after Lee was diagnosed, doctors concluded that her stroke probably started with a blood clot in her leg caused by birth control pills. The vomiting might have been a symptom of the problem, but doctors believe it also dislodged the clot in her right leg, allowing it to travel through her system and up to the left side of her brain. The clot stuck there, cutting off blood flow and killing brain cells in the part of Lee's brain tissue that deals with language and communication. At first Lee didn't understand what the stroke meant. She cried in the hospital -- Christmas Day was particularly hard -- but she didn't realize the groping for words, the weakness in the right side of her body might be permanent.
She was released from the hospital and admitted as an outpatient to The Institute for Rehabilitation & Research at Memorial Hermann in January 2013. The day she came home, Lee picked up her backpack, black with a cartoon bulldog on the front, and started going through her papers and test scores from the previous semester. She was already registered for classes for the spring semester, and she had a year and a half of school to put in before she got her bachelor's degree in accounting. It had taken her a long time to figure out what she wanted to do with her life, but she had a plan. After she graduated, Lee was going to apply to law school and become an attorney, just like her longtime boss at the title company. She wanted to become an entertainment lawyer, negotiating contracts and helping performers make deals. To Lee, nothing had changed, and she was still going to follow through on these plans.
Brown was confused, but he watched her, not sure how to respond. She could barely speak. While she knew exactly what she wanted to say, Lee would reach for the actual words and come up empty. She started using a small notepad while she was in the hospital, writing down a few errant words to fill in the verbal blanks.
But in those first days and weeks after the stroke, the words she scribbled on the page weren't the ones she meant. School was starting soon, and Brown realized she was intent on going. He tried to suggest that she should focus on recovery, but he couldn't stand to tell her he didn't think she could do it.
Lee's speech therapist, Kathryn Self, was the one to explain. Self has been a speech therapist for four years. The process of dealing with aphasia and relearning how to speak can be brutal, she says. "Most people have never even heard of aphasia until they or someone they know has it, so they have no idea," she says. With aphasia, it's not that the person suddenly loses her intelligence. The mind is still in there, intact, but the conductors in the brain tissue that translate thoughts and feelings into words and sentences aren't properly connected.
To work with someone who has aphasia, you have to assess where that person is, Self says. "Can they look at a common object, like a cup, and summon the word 'cup'? Can they look at a cup and find the words to say they are thirsty?" Self asks. There is a different level of language buried inside the brain that is tied to music, to the pitched rhythmic patterns of words, phrases and songs heard every day. Something as simple as saying "Happy Birthday," pitching the words so they flow out more easily, is a huge victory for a person with aphasia. Lee could try to attend her classes, Self told her, but really, she needed to think about stepping back and concentrating on the work in front of her.
Lee went to TIRR for rehab work, but she refused to go anywhere else. She returned to work at the title company, but she was given a job doing paperwork because she couldn't talk to customers anymore. Some of her friends and acquaintances became distant, avoiding her, acting as if the stroke were something they could catch. Lee became more withdrawn. Even her best friends could get her to come hang out only if they showed up at the apartment and dragged her out the door. She was cold toward Brown. He hadn't signed on for this, she told herself, and she didn't want him to stay with her out of pity.
Before the stroke, they'd first met playing a word game, Words With Friends. On their first date, she cooked and they sat and ate dinner and talked, and conversation was so easy. They understood each other. Now she was staring down a life in which she might never say a complete sentence again. The day she finished TIRR, she came home and told him.
"Gone," she said, touching the crown of her head, where the blood clot had lodged. "It's gone. You can," she said, pointing to the door. The two argued. He took care of her during the stroke and never flinched, even when she was covered in her own urine and he had to bathe her like a child -- it had never even occurred to him to leave, he furiously explained. "When I first met you, I knew we were meant to be together, so I'm not leaving you. Even if you don't want me anymore, I'm not leaving you right now, not right after a stroke," he told her. They could be roommates, and he would sleep on the couch if she didn't love him anymore, but he was staying.
As she recovered, the numbness she felt about what had happened gave way to anger. There were only flashes of memory from that night -- waking up on the floor confused and surrounded by paramedics, a moment in the ambulance -- and she couldn't understand what happened at Methodist. She wanted answers. Lee and Brown contacted Robert Painter, a Houston lawyer who specializes in medical issues.
It would be a rough road, Painter explained, and they were facing a difficult task. In 2003 the Texas Legislature enacted medical tort reform making it more difficult for emergency-room patients to sue doctors for malpractice, Painter says. The burden of proof required to prove malpractice in a hospital emergency department fell heavily on the patient, and the standards required to prove "willful and wanton negligence" became much more stringent. On June 4, 2014, Lee filed a lawsuit for medical malpractice against Nuszen, the ER doctor; Thonhoff, the neurology resident; Volpi, the neurologist; and Methodist Hospital. The suit contends that the doctors exhibited wanton gross negligence in their failure to diagnose her as having an ischemic stroke on December 16, 2012.
Methodist representatives and their lawyers have declined to comment on the lawsuit, and Nuszen, Thonhoff and Volpi have not responded to requests for comment. The lawyers representing all three of the doctors and Methodist filed responses to the lawsuit with general denials and demand for a jury trial.
In response to expert opinions filed with the court by Painter, Methodist was more forthcoming about its stance on the matter. "According to the documentation in the medical record, she presented with a history of drinking and smoking marijuana the previous day and remained in an altered state the day of presentation at Methodist. The medical team performed a CT scan of the head and a neurology stroke evaluation. The CT scan was interpreted by the radiologist to indicate that no acute intracranial abnormality was present. Plaintiff was discharged home by the medical team with the diagnosis of: 'inconsistent and invariable exam. Not a clinical stroke based on history and physical exam.'"
According to Methodist, Lee's medical team did everything they were legally obligated to do to find out why she was unable to speak or walk.
Working with Self, Lee focused on getting better, and when she practiced speaking, she imagined herself speaking to Brown. One day in June, Brown was in his classroom when he got a call on his cell phone. Lee almost never called him anymore -- she usually texted a scattering of words and pictures to get her meaning across. "Hello," she said, carefully shaping the word. "Hello, Andre." Brown sat down and cried in the middle of the empty classroom.
Life is moving on. One day in July, Brown came home and told Lee to hurry up and get dressed; they were late for the birthday party of one of her best friends. "What? Why? How come?" Lee yelled as she rummaged through her closet to find the right dress. People have a habit of talking over her or talking to Brown instead of telling Lee things directly, but her own friend had forgotten to invite her to a birthday party. She was so angry, she didn't notice the way Brown was grinning at her or that he was covered in sweat as they drove to Perry's Steakhouse.
Lee got out of the car and marched inside while Brown wiped his sweaty palms on his slacks and tried to look cool as he walked in behind her. There were red and white rose petals scattered on the floor, and all their closest friends were lined up with roses in their hands. He got down on one knee and proposed. They're getting married in May 2015.
Still, there are things, so many things, she can't do. Lee's family lives in California, and talking on the phone is hard because she can't always say much. Planning a wedding would be impossible without the help of her friends. It has taken more than a year for Lee to get to the point where she can walk into a fast-food restaurant and place an order. Brown pushes her to get out and speak for herself, and she's learning how to be out in the world and to make it through awkward conversations in which people shout at her and treat her as if she's stupid because of how she speaks.
She worries about their future children, whether she'll be able to talk to them, wondering if they'll pick up her stilted speaking habits and take them out into the world. First impressions are crucial, and she doesn't want her children burdened with the same disconnect from the world. She has no memory of her hours at Methodist, hours that may have determined the course of her life, but she wants to understand what happened, what she did that made the doctors there dismiss her.
Her voice breaks and her eyes are glittering with tears when she tries to explain. Slamming her hand on her chest, she says: "I just want. Why? What? What was it?"