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When Lillian Chason was 16, she got a life-changing diagnosis: her trouble finding the right glasses stemmed from a genetic eye disease called Stargardt disease that would slowly make her go blind.
But she wasn't about to let that stop her. At Barrington High School in Rhode Island, she kept singing and acting in school shows, and when she went on to the University of North Carolina at Chapel Hill, she even won the lead role in a play.
"Her vision was a problem, but it wasn't holding her back," says her father, Eric Chason, an engineering professor at Brown University. She was really enjoying college, he says, busy and happy and building a social life despite the challenge of getting around without being able to see well anymore.
Just before Thanksgiving in 2009, with the H1N1 pandemic in full swing, Lillian fell ill. Dead tired and short of breath, she went to the university health center.
"That's where things, unfortunately, went really bad," Eric Chason says. "They didn't recognize how severe it was. They told her to go back to her room and just wait it out, because she was probably getting the flu. And the worst thing they told her was, 'Don't come back. Because you know, you're probably going to get worse, so if you feel worse, just understand that's the problem.' "
Lillian did get worse. She got so weak she couldn't climb back up into her loft bed. On the phone, her mother, Cate, begged her to go back to the health center, Eric Chason says.
"And Lil said, 'No, I'm a big girl, they told me not to come,' " he says. "She wasn't old enough to know there are some times you have to disobey."
When a relative brought her back to the health center two days later, she was sent straight to the emergency room.
"But by the time she got to the hospital, her lungs were filled with fluid," Chason says. "It was like drowning. She was no longer able to breathe for herself, and she was on a ventilator."
Lillian's story — told in her father's recently published memoir, "Breathless" — is a cautionary tale from a decade-old pandemic, as the Wuhan coronavirus causes alarm around the world.
Public health officials point out that while the coronavirus is scary because it's new, the flu reliably lands hundreds of thousands of Americans in the hospital every year, and kills tens of thousands.
Severe flu poses the most risk for the old, the very young, and people with chronic health conditions. But it can also pose special challenges on college campuses, where germs spread quickly and students may be handling their own health for the first time.
'It Was Like A Race'
Lillian Chason's lungs were so damaged that even a ventilator wasn't enough, and her doctors took a desperate measure. She was put on a machine called an ECMO, that bypasses the lungs and circulates oxygen directly into the patient's blood. But she could only stay on it short-term, because the treatment causes damage, too.
"It was like a race," Eric Chason says. "Is she going to get better before the ECMO runs out? And there were signs that she was doing much better. So we were very hopeful."
Day after day at her bedside, he says, there was time to think about what went wrong, and about how, at orientation, parents had been told it was time to let their kids go and trust the university to keep an eye on them.
That trust can be particularly hard when it comes to flu, says Dr. Adrienne Randolph, an expert on severe influenza at Boston Children's Hospital.
Before college, she says, usually parents manage their kids' flu — saying, perhaps, " 'You're dehydrated, you're going to go see the doctor and get some IV fluids.' Or, 'No, this doesn't look right, your fever is too high and you are having trouble breathing, you're going to the emergency room.' "
When flu turns severe, Randolph says, it's usually because the virus suppresses the immune system and allows bacteria that live in our upper airways to invade the lungs, where they're not supposed to be. There, she says, they can "cause a secondary bacterial pneumonia. And when that happens, that is highly associated with worse disease, ICU admission" and sometimes death.
Sometimes, too, the immune system over-reacts and runaway inflammation hurts the patient. So flu patients need to be carefully watched for danger signs.
"And how do you monitor these kids when they're off laying in their dorm rooms and nobody knows that they're not able to breathe easily and that they're not taking in any fluids and they have a really high fever?" Randolph asks. "And maybe they're just sleeping all day. And so nobody even knows how sick they are. "
It is indeed a challenge, says Dr. Giang Nguyen, executive director of Harvard University Health Services, because college students are considered adults and are emancipated.
But there are systems in place, he says: Many colleges don't have infirmaries, but they do have resident advisors in the dorms that keep an eye on students. And college health services know students won't have the health literacy of more seasoned patients, he says.
"And so we really do spend a lot more time educating our patients because of that," Nguyen adds.
It's hard to predict which cases of flu will turn severe. So students are taught warning signs to watch for, he says, like extreme lethargy or inability to eat or drink at all. At the end of a health center flu visit, a student might be told something like: "If you are finding that your shortness of breath is concerning to you; if you are not producing urine; if you have a high fever that does not respond to the typical treatments like taking a Tylenol; those things are worth talking to someone."
'That Would Just Be Too, Too Cruel'
Lillian Chason spent 21 days on the ECMO machine. But her parents' optimism was misplaced: at that point, the doctor told them the machine was causing too much internal bleeding, and there was no more to be done. He gave them a chance to say goodbye, Eric Chason says.
"He offered to turn the sedation off so she could wake up," he recalls, "but we said no, that would just be too, too cruel."
Lillian Chason died on Dec. 16, 2009. She was 18. Her father's book, "Breathless," chronicles her illness and her life, interspersing hospital and family scenes.
In a statement, the University of North Carolina says it's committed to promoting wellness, and has made changes since Lillian's death. Among them: If a student who visits the health center is short of breath, they're told to make an appointment to come back in, and a nurse follows up within 24 hours.
Until Lillian got so ill, her father says, he didn't take the flu seriously.
"When she was first sick and my wife was frantic, I'm like, 'It's just the flu. It's not that big a deal.' And of course, she was right."
Dr. Randolph from Boston Children's says severe flu can strike people who are otherwise healthy. The flu vaccine can help; it isn't perfect, she says, "but it's the only thing we have in trying to prevent these severe cases: People who get vaccinated have a lower risk of hospitalization and severe cases."
Only a tiny percentage of flu patients die, but so many people catch the virus that last season, the death toll was more than 60,000 Americans, the U.S. Centers for Disease Control reports.
This season is looking like a heavy one as well, and has yet to peak.
This segment aired on February 12, 2020.
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