Science Vs - A Mystery in the Air

Episode Date: May 26, 2022

When a little girl, Ella Kissi-Debrah, suddenly got sick and landed in the hospital, doctors were stumped. In this episode, her mom, Rosamund, takes on the fight to find out what exactly happened to Ella. And the answer has BIG implications — for us all. We’ll hear from Rosamund Adoo-Kissi-Debrah and Professor Stephen Holgate. Find our transcript here: https://bit.ly/3z17Gdv This episode was produced by Ekedi Fausther-Keeys with help from Rose Rimler, Wendy Zukerman, Michelle Dang, Meryl Horn, and Courtney Gilbert. We’re edited by Blythe Terrell. Wendy Zukerman is the Executive Producer. Extra help from Saidu Tejan-Thomas, Nicole Beemsterboer, Kendra Pierre-Louis, and Alex Blumberg. Fact checking by Erica Akiko Howard. Mix and sound design by Bumi Hidaka. Music written by Bumi Hidaka, Peter Leonard, Emma Munger, Bobby Lord and SoWylie. Thanks to the researchers and experts we got in touch with for this episode, including Jocelyn Cockburn, Professor Vernon Morris, Dr. George Thurston, Dr. Lauren Zajac, Dr. Jennifer Burney, Dr. Sacoby Wilson, Dr. Melissa Burroughs, Dr Wei Peng, Professor Barbara Hoffman, Dr. Michael Craig, and Dr. Wes Austin. Special thanks to Rachel Humphreys, BBC Motion Gallery / Getty Images, Jonah Delso, Jackie Llanos, The Zukerman Family and Joseph Lavelle Wilson.  Learn more about your ad choices. Visit podcastchoices.com/adchoices

Hi, I'm Wendy Zuckerman and you're listening to Science Versus from Gimlet. Today on the show, we're going to tell you about a medical mystery. And when the case was finally cracked, it inspired a movement, achieving what mountains of scientific data couldn't. All right, let's jump in. To tell us all about it is Rosamund Adu Kisidebra. She's a former teacher in London. One second, one second.

This is my daughter. Let's see what she is. Hi, bubs. Can you get what? Chocolate cereal. Yeah, okay. Oh, thanks. Bye, love you.

I love you too. Bye. Rosamund is a single mum, and just as we got on the call, one of her twins phoned. It was about her birthday. What did she want? For one day in the year, I allow them to have chocolate cereal. Oh, do you want a chocolate cereal?

Of course, she makes me sound like such a strict mum. Oh, Lord. She did say, I love you at the end. So see, I'm doing good. But our story today isn't about the twins or chocolate cereal. It's about Rosamund and her oldest daughter, Ella. She was the big sister to those twins. She had big brown eyes and often wore her hair in braids. Rosamund told us that she loved to swim and bike and she was super competitive.

Like she would play chess, connect four, so she was into board games. She was into beating people, you know, like layering people in, pretending that, you know, like a chess game was equal, that when you got comfortable, bang, bang, bang, checkmate. Mum, would you like to play chess? No, thank you very much, Ella. I don't want to play chess with you.

So Ella was smart. At nine years old, she was picking up Jane Eyre. And just the other day, Rosamund found this book that Ella had been reading. It was called The Observer Book of Genius. So who did Ella compare herself to? I thought, let me have a look in there. Plato, she would.

Pythagoras. So she had a great sense of humour. But a few years before all this, Ella's life had taken a turn. It started in October 2010, when she was six years old. Ella and her mum had gone to visit the Monument to the Great Fire of London. It's this tall tower and to get to the top you have to walk up more than 300 steps. So together they were climbing this tall tower. But weirdly Ella was struggling. She'd been a little sick, had a bit of a cough. And when she was climbing up the stairs, she said, oh, I can't climb up the stairs. And then I remember, typical mum, I said, you've only got a cold.

Little did I know it was the beginning of the end. That night on the way home, Ella fell asleep on the train, which was also strange. And from there, things got bad, quickly. That little cough that Ella had turned into these terrible coughing fits that seemed to come out of nowhere. Sometimes she'd cough so hard that she couldn't breathe. What used to happen is she used to get so much mucus, her lungs would collapse and she would stop breathing. So we had to resuscitate her to live. And because oxygen

wasn't getting into her brain, sometimes she'd have a seizure and even pass out. And by Christmas time, she had been admitted to ICU for the first time. She was admitted to hospital 28 times. 28 times? Yes. Yes. So she had hundreds of attacks. And the scariest part of this was that Rosamund didn't know why any of this was happening. How did her kid go from being perfectly healthy to being in the ICU in just a couple of months? Ella would go to some of the best doctors in London, many different hospitals,

and yet no-one could tell them what was going on. After the break, the story of Ella's medical mystery and how it made the invisible visible. Bumble knows it's hard to start conversations. Hey. No, too basic. Hi there. Still no.

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entrepreneur, investor, and now host of the new podcast, Pioneers of AI. Think of it as your guide for all things AI with the most human issues at the center. Join me every Wednesday for Pioneers of AI. And don't forget to subscribe wherever you tune in. It's season three of The Joy of Why, and I still have a lot of questions. Like, what is this thing we call time? Why does altruism exist? And where is Jan 11? I'm here, astrophysicist and co-host, ready for anything. That's right. I'm bringing in the A-team. So brace yourselves. Get ready to learn. I'm Jan 11. I'm bringing in the A-team. So brace yourselves.

Get ready to learn. I'm Jana Levin. I'm Steve Strogatz. And this is Quantum Magazine's podcast, The Joy of Why. New episodes drop every other Thursday, starting February 1st. Welcome back. Where we left off, Ella, who had been this really healthy little kid, was now in and out of hospital, and her mum was desperate to figure out what was making her sick. What did doctors tell you, you know, when you were going into hospital? We didn't know. We were testing her for loads of things. Epilepsy, cystic fibrosis, loads of things We were testing her for loads of things. Epilepsy, cystic fibrosis,

loads of things we were testing her for. Doctors were confused because her symptoms were kind of all over the place. Like Ella's lungs were producing way too much mucus, which made it harder and harder for her to breathe. And that kind of thing can happen in people with cystic fibrosis. So they tested her for that, but it came back negative. Doctors also tested her for epilepsy because of the seizures, but that didn't pan out either. After tons of blood tests, EEGs, and doctor's appointments, Ella finally got a diagnosis.

They told her she had asthma, but that was weird too. Because she didn't present herself like a normal asthmatic. Like one of the best medications that we use for asthma, steroids. It didn't work for Ella. And then there was her cough. There was just something weird about it. You know what? I would recognize Ella's cough anywhere.

If you gave me a thousand coughs, I could still pick out her cough. The medical name for a cough like Ella's, where you cough until you pass out, is called cough syncope. And one day, while Ella was getting one of her many tests, Rosamund started Googling it. I was looking it up in hospital. And the research, because I'm a bit obsessed with research in my job as a teacher,

the research at the time when it came to coughing syncope showed me there were mainly men in their 50s and they'd been long distance lorry drivers. And I remember looking at the time going, they are men in their 50s, she's nine, I've never smoked, don't get the connection. And I remember showing it to the doctor and didn't get the connection. It wasn't a thing that a child got, so it didn't make sense she had it. Yeah, most of the people with cough syncope are middle-aged men

who have been smoking for years. It rarely happens to kids. One of Ella's doctors said that her case was so odd that they wanted to write about it in a medical journal, which Ella was actually kind of excited about. And Ella would go on to be written up in many medical journals, making international news and helping perhaps thousands of people breathe easier. But in the middle of all this, Rosamund and Ella

didn't know any of that. And then there was this one final but really important mystery here. If this truly was asthma, then what was triggering it? For most asthmatics, you get an attack because it's triggered by something. Cigarette smoke, mold, cleaning products. That stuff gets in your lungs and causes this huge inflammatory reaction and then your airways constrict. But doctors tested Ella for all kinds of stuff, and none of those triggers made sense. And the thing is, Ella didn't always have attacks. They'd come in clusters, but when she was feeling okay,

Rosamund would try hard to keep things normal. Ella loved listening to music, so they'd put on her favourite songs and dance around to them. Rosamund would try hard to keep things normal. Ella loved listening to music, so they'd put on her favourite songs and dance around to them. Rosamund remembers this one song that she loved by Justin Timberlake and Jay-Z. It had just come out. This was early 2013. It's called Suit and Tie.

Oh, I love my suit and tie. See, I can see her dancing and Ella's used to, like, jump on the sofas. You know how Justice used to jump? I'm like, Baba, don't break your dancing. And Ella used to, like, jump on the sofas. You know how justice, you jump. I'm like, Baba, don't break your neck. Seriously, Baba, don't break. We have enough problems, I used to say to her. Soon after, Ella had another asthma attack.

Rosamund said that it started out just like a normal night. Ella was listening to music, Skyfall by Adele. She was kind of obsessed with that song. And I remember that night she was in the playroom on the computer playing Skyfall again and again. And I remember because it was Valentine's Day and I'd gone and bought food, I was cooking. I was like, look, you need to go and have a shower and be ready

to come and eat because we needed to eat by a certain time. You know, we had school the following day. And I remember my kids will say to you, oh, mum shouted at her the night before. She was like, look, I know what happened wasn't meant to happen, but we need to eat. And of course, there she is on there. And I remember being so upset when Adele won the Oscar that Ella wasn't alive to see it. Ella had a coughing fit that led to a seizure and then a heart attack. She died in the middle of the night at 3am on February 15th, 2013. In the UK, when someone dies of unknown

causes, a coroner is called in to do the assessment. In 2014, the coroner declared that Ella died as a combination of acute respiratory failure and severe asthma. But still, none of this made sense to Rosamund. And she still wanted to understand what had triggered the attacks. What killed Ella? It was important to know why she died. She has siblings, and I knew as they got older, you know, what was I going to say?

She got asthma, why, how. I had no answers. The coroner's report was mostly useless to Rosamund. Except there was this one thing. A clue. Her trigger was to do with something in the air. It didn't specifically state what it was. And that gave me some hope. I thought, oh, at least this is a bit further than we've got before. To push it even further, she started doing a bunch of media interviews.

To say, look, this is what's happened to my daughter. If anyone's got any ideas out there, if they can help me get to the bottom of this mysterious thing, can they let me know? And that is how the ball began to roll. People got in touch from all over the country, throwing out all kinds of ideas for what might have happened to you. And this eventually led her to Stephen Holgate, a professor at the University of Southampton who specialises in asthma and allergies. One day in 2016, he was on the train, heading home from London. On the long journey back, he picked up the standard and he was reading it. I happened to pick up the evening standard and I saw Rosamund Kissy Deborah.

I mean, it was just a dreadfully sad story. Stephen had spent his entire career researching asthma, getting to know the lungs inside and out. And here was his life's work sitting in front of him in the form of a medical mystery. I mean, I'm a doctor, you know, and there was clearly an opportunity to try and unravel what had happened. And I know Rosamund couldn't do that.

None of the doctors in all these hospitals could do it either. But because I had spent, you know, my life researching asthma, you know, I knew a lot about the disease. He got in touch with Rosamund and said, would you mind if I look through your daughter's medical records? And she was like, yes, go for it. Handed them over and Stephen dove in. Mounds and mounds and boxes of hospital notes and GP records and all the rest.

Stephen also went to the hospital where sections of Ella's lungs were being preserved. He pulled out these tiny lung scrapings that are about the size of a fingernail, put them under the microscope, and straight away, he saw something odd. And what I saw in the sections was almost unbelievable, really. The lining of her lungs, which should protect them from gunk in the air, had been totally destroyed. It's as if you'd lost your skin and had kind of raw areas underneath. In a healthy lung, you should see these lovely cells that look like columns with little hairs. But with Ella, those little columns had been replaced by a totally different cell, one that pumps out mucus. And this was mucking everything up.

This lining in large areas had peeled off and was rolled up into the airway itself. It was coming away and was rolling up with mucus, very sticky, viscid mucus. So she had these large plugs of mucus that blocked her airways. You are supposed to have some mucus in your lungs and it's helpful. It captures gunk in the air and helps you to cough it out. But Ella's lungs had become a bit like a mucus factory. Stephen looked for signs of what might have been irritating her lungs so much, like a bacterial or fungal infection.

But nothing could explain this. But then a new clue emerged, away from the lab. Something that clinched it for him. We were, I suppose, I hate to use the term fortunate, Wendy, but, I mean, in a way it was. It just so happened that there was a monitoring station for air pollution one mile from Ella's house. An air pollution station.

It was monitoring stuff like nitrogen dioxide, which gets spewed out by London traffic and can damage lung cells. Now, by this point, Rosamund already had a lawyer to help out with Ella's case. And so her legal team and Stephen got to work. Here's what they did. They matched up the pollution levels for the days surrounding when Ella would have these really bad attacks. And bam. We could see the local air pollution levels were astronomically high. Illegal levels of

nitrogen dioxide. Oh, gosh. The team found a pattern. So Ella's attacks would come in these clusters, and mostly they hit when pollution levels were particularly high, much higher than the World Health Organization sets for maximum safe levels of pollution, and higher than the UK government is supposed to allow. And in the days before Ella died,

the pollution levels were bonkers in her neighbourhood. Through his academic research, Stephen had suspected that air pollution might have played a role here. But now, here was the evidence, and he was sure pollution had been triggering Ella's asthma attacks. And it all made a lot of sense, because it turned out that Ella's family lived near one of the busiest roads in London.

So all of Ella's life, she'd been breathing in lots of car exhaust and other pollution. When Rosamund found out about all this, she was shocked. Like, what, the air is what's killing her. What I now know is every day she was going out on her bikes, you know, she was really active. She was breathing in the air around. Yeah, even in the garden.

It's kind of a bit hard because the pollution is invisible. You can't see it with the naked eye. We're still not sure why Ella's asthma was so deadly. Like one of her siblings has asthma, but it's not nearly as bad. Stephen thinks it's perhaps some very unlucky genetic predisposition. But what Stephen did know was that every time little Ella breathed in all that pollution, it kept irritating her lungs more and more and more until it destroyed them. Rosamund started researching about pollution, and she realized that in the UK and the US,

pollution levels tend to be higher in black and brown communities. And that's partly because the government and industry have gotten away with building things like highways through black and brown neighborhoods. And the thing is, the neighborhood where Rosamund lives, it has a pretty large black population. Rosamund herself is black. If we didn't live, I think that's what blows my mind. If we probably didn't live in this house near this road, then maybe my daughter will still be alive.

So it is as simple as that. If we live somewhere else, then this might not have happened. Now, if I think that, then I'll be sad all the time. So I try not to drive myself crazy. And once Rosamund knew that air pollution had played this big role in killing her daughter, her next question was, why didn't any of Ella's doctors know about this? Like, why didn't they even suggest that air pollution could have been triggering her asthma? There'd been heaps of studies, even at the time, showing that air pollution could make asthma worse.

But despite that, it just wasn't on the radar of some of the best doctors in London. How is that possible? That answer is coming up just after the break. Welcome back. We just heard that pollution was a major trigger for Ella's asthma. But until Stephen and the team came along, none of her doctors had even suggested it as a possibility. So why is that?

Well, some researchers told us that it could be because these days you often can't see the pollution around us. It's a little out of sight, out of mind. And that is not how it used to be. In fact, London used to burn so much coal that the air turned this gross, pukey colour. When that happened, it was known as a pea super. So time for a bit of history and then we'll get back to Rosamund's story. One of the worst events where smog took over London was known appropriately

as the Great Smog of London. If you're a fan of The Crown, you know what I'm talking about. It happened in December 1952. Here's a BBC doco about it. This was smog on the grand scale. There'd never been anything like it before. The sky and the light were blotted out and London coughed and crawled almost to a standstill in murky yellow gloom.

The smog stuck around for five days and ended up killing thousands of people. And while people coughed and choked, the smog got thicker and darker. And nobody could do anything about it. But they could do something about it. And they did. Events like this kicked governments in the butt to get rid of the smog.

In places like the UK and the US, where similar events happened, they started passing clean air acts to cap how much gunk power plants, homes and cars could spew into the air. And these laws, they made a big difference. Car exhaust is safer than it used to be, and many power plants now have doobie whackers on them, like scrubbers, to keep some of the pollution out of the air. So yeah, for London, no more pea soupers. But over the years, scientists have come to realize that the invisible stuff that is still getting pumped into our air,

it can do some dangerous things to our health. One researcher told me it scares the shit out of her. This pollution can break down into teeny tiny pieces about the same size as bacteria. They float in the air, and when you breathe them in, they're so small that they can just sneak inside us. Here's Stephen again. We know that these pollutants can penetrate the lung and pass through into the bloodstream

and circulate to all parts of the body now. Really? All parts of the body? Yeah. The brain, the heart, the pancreas. And Stephen says air pollution is now being linked to all sorts of diseases. Coronary heart disease, dementia, diabetes. It accelerates blindness.

Blindness? Yeah. Yeah, it's thought that tiny bits of pollution can mess with our retina, increasing our risk of eye disease. And some of these bits of pollution are so small that they can cross the placenta, potentially affecting fetuses and even getting into our brains. We're still working out what all of this means,

but some of the other effects of pollution are more clear. Like, besides fouling up our lungs, we've known for years that crap in the air increases our risk of getting heart disease. So, for example, a study of around half a million older folks found that those living near a highway or busy street were 30% more likely to die from coronary heart disease than those living further away. And that's why places like the World Health Organization and the EPA keep lowering what a safe level of pollution is. But the fact is that almost nowhere in the world actually meets those standards every day. So even though it's really rare to get sick like Ella did from pollution, to Stephen, he sees what happened to her as an extreme example of what's happening to all of us.

Ella really was like the canary in that she was able to sense the pollution and be a warning to others. And a warning to government, really, that something needs to be done about this. And so, Rosamund hatched a plan. She wanted to get air pollution listed on Ella's death certificate. And if she could do that, it would be a world first. Rosamund wanted the real reason that Ella died to be official. But she also thought that perhaps Ella could put a face to all these awful statistics about what pollution is doing to us. Her lawyer also thought that it would open the door to more lawsuits for other people to force governments around the world to clean our air.

So can you see, as the journey was going on, the whole thing then got bigger and bigger. But I am very honest to say, in the beginning, it was definitely all about her. For getting air pollution on a death certificate, it was going to be tricky. Rosamund had to go to a court

to convince a coroner that there was a direct link between pollution and Ella's death. And even though we have statistics showing that pollution contributes to millions of deaths each year, it's actually really hard to point to a person and say air pollution killed them. But with Ella, the data was so damning.

She was living under illegal levels of pollution. And so Rosamund thought she could do this. There would have not been any point knowing all that research and failing in court. That wasn't going to help anything. So the most important thing still was to get that on her death certificate. In late 2020, almost eight years after Ella died, the second inquest into her death began. Stephen was an expert witness. Did you think you'd win? Was it like you thought this was a slam dunk?

I had no idea what would happen. What I did know was that I knew about asthma. I knew about Ella because I'd spent the last two and a half years poring over all this material. And as Stephen remembers it, the government lawyers really put him to task. My evidence was only about nearly two hours, but my God, they really tried to put me through the mincer. He kept saying, you will agree. You know, he pointed to some document.

We had a bunch of documents about two feet high. And every time he said that, I said, no, I do not agree with that. And actually, that is wrong. After all the evidence was presented, the coroner had to decide. Did pollution kill Ella? I remember the agonising wait. It was really a stressful time. In the first ruling of its kind,

pollution from busy roads, a coroner found today, contributed to the nine-year-old's premature death. Ella tragically made history when she became the first person to have air pollution listed as the cause on her death certificate. Today, a victory for her mother. A coroner's inquest found that air pollution made a material contribution. British police have just recognized the role of air pollution in her death. Oh my goodness me. Apparently her story was written up

two and a half thousand times around the world. India, Australia, everywhere. It was enormous because it had never been done before. Ella is the first person in the world to have air pollution on her death certificate. The new coroner's report listed air pollution, along with asthma and acute respiratory failure, as Ella's official cause of death. And since that happened, things have been getting better. The council where Ella lived has made it way easier for people to find out what's going on with pollution on any given day.

And doctors' groups in the UK are updating guidelines and training manuals to make sure that doctors know that air pollution can trigger asthma. And in London, they already had this program that basically charges a fee for some of the dirtiest cars and trucks. Right now, it's only in central London. But after the decision came down, they said that they wanted to expand it even further to where Ella lived. And if they do, it means that her neighborhood might get a little cleaner. Stephen says that this case and this little kid was able to break through and

stir up real change when tons of research and mountains of papers on pollution and asthma didn't. I can't tell you what a big impact this has had. You can have all the epidemiology in the world, but having the story of a single mother and a child, you know, with real facts actually is more influential in many ways than all of the sort of complex statistics and everything else put together. We now know the detrimental impact of air pollution on the public's health. So can you see how much things have changed compared to where I was? And for all this work, last year at the United Nations Big Conference on Climate Change, the World Health Organization dedicated a special report to Ella. Right there on the cover, it says,

In memory of Ella, Sister Deborah, and all other children who have suffered and died from air pollution and climate change. Oh my gosh. It shows you the enormity. And you know what? It's too big to even contemplate it. I don't sit there. As you can see,

when you first jumped on, you know, I'm trying to organise my twins' birthday. I don't sit there and think, oh, you've achieved this enormity. Then it will get too big. So I do,

I continue on my journey and do that. And I try and be a good enough mum as I am for my other, I don't sit there and say, oh, this enormous thing. No. But Rosamund knows that what they've done so far, it's not enough. She quit her job as a teacher and became a full-time clean air advocate, giving speeches, starting a foundation, and organising protests. She wants our air to be cleaner. She wants us to do the stuff that we've been talking about since Captain Planet came out, burning less fossil fuels, having fewer cars on our roads.

And the vehicles that are on our roads, they need to be electric, run on the power of the wind and sun. And, you know, Rosamund says we're going to need to do this stuff for climate change anyway. Fossil fuels are killing us and they can do it any which way they like. Sooner or later they're going to have to address it. What do you think Ella would make of this work that you've done and all of this

the fact I'm talking to you guys in the states now oh let me think of something I think she'll be very proud seriously seriously she'll be I don't know it's really difficult because her aim was to be a a pilot and we had started steps towards that. She was very clever, like I said to you. She was passionate about flying and ultimately the air that she loved so much was in effect killing her. So I don't know what she would say about that on a very serious note. So she was here. She definitely made her voice heard. How would she feel feel i think she'll be quite happy we're talking about her today if you ask me that's science versus That's Science Versus.

Hello. Hey, I'm Katie, producer at Science Versus. Hi, Wendy, host of Science Versus. How many citations in this week's episode? There are, drumroll, 128 citations. That's a big one. And if people want to see these citations, where should they go? They can click on the link in our show notes. And through researching this episode, have you changed anything about how you're living your life? Yeah. I will say at first I was like pretty freaked out. I remember there was this one time that I saw like this giant, like nasty, like 12-wheeler truck come down

and I was literally looking for roads to run away to. Oh my God, I'm doing the exact same thing. I'm doing the same thing. It's so bad, but it really doesn't have to be like that. I think the biggest thing that I've changed is I've started actually really paying attention to the air quality on my phone on the weather app. Oh, tell me more about this. It's like a scale between zero and 500. And typically air quality is pretty good if it's at 50 or below. And so if it's above that, nowadays, I probably won't go on like a run. I'll wait until the air quality is better. I don't know. I just like to be cautious and I like to know what's going on and it makes me feel better. Oh, thank you so much. Thank you.

This episode was produced by Ketty Foster-Keys with help from Rose Rimler, me, Wendy Zuckerman, Michelle Dang, Meryl Horn and Courtney Gilbert. We're edited by Blythe Terrell. I'm the executive producer. Extra help by Saeed Tijan Thomas, Nicole Beamster-Boer, Kendra Pierre-Lewis and Alex Bloomberg. Fact-checking by Erica Eki-Gohowit. Mix and sound design by Bumi Hidaka. Music written by Bumi Hidaka, Thanks to all of the researchers and experts that we got in touch with for this episode,

including Jocelyn Coburg, Professor Vernon Morris, Dr. George Thurston, Dr. Lauren Zajac, Dr. Jennifer Burney, Dr. Shakobi Wilson, Dr. Melissa Burrows, Dr. Wei Peng, Professor Barbara Hoffman, Dr. Michael Craig, and Dr. Wes Austin. A special thanks to Rachel Humphries, BBC Motion Gallery, Getty Images, Jonah Delso, Jackie Yanas, the Zuckerman family, and Joseph LaBelle Wilson. I'm Wendy Zuckerman. Back to you next time.