When they set out with their red noses, a ukulele, and a kazoo, the clowns had no intention of toying with the boundaries of consciousness. They just wanted to make sure they weren’t scaring any kids. It seemed unlikely. As clowns go, these two were pretty unscary: Ricky wore suspenders and a propeller-topped beanie, Dr. Flap wore a lab coat and an aviator’s cap, and neither used any makeup. Still, they knew that their audience’s wishes were too often overlooked, and wanted no part in that pattern.

For a therapeutic clown, silliness is serious business. Helen Donnelly, who personifies Dr. Flap, had spent years on stages and under big tops, traveling with Cirque du Soleil, doing solo shows, speaking made-up languages, dancing in front of clotheslines hung with cuts of meat. When she started working at Holland Bloorview Kids Rehabilitation Hospital in Toronto, her absurdities took on a different aim: to transport kids out of the disorienting realities of medical treatment and into imaginary worlds where they had a sense of control.

“I’m so glad I’m just a professional idiot, I’m so glad I’m not a grownup,” she’ll say — but she’ll also tell you that she was among the first clowns in the world to make notes in medical records. She and her clowning partner round the wards alongside doctors and respiratory therapists. Their acts of tomfoolery are referred to as interventions, sometimes taking place during injections and wound-dressing changes.

The kids who first prompted Ricky and Dr. Flap’s concerns, back around 2007, were those who — for reasons of brain injury or birth defect, stroke, or seizure — could neither move nor speak. The pair had all sorts of tricks up their sleeves, devised for a whole range of differing abilities. They improvised songs and soundscapes. They juggled scarves. They blew great glistening bubbles and pretended to gobble them up.

With their most profoundly disabled clients, they made sure to pause for a response, giving the kids the kind of time most clinicians don’t have. They’d wait for 15 seconds, 30 seconds. If they saw a sign — a blink, a tiny turn of the head — they’d guess at what it meant. Sometimes, they had nothing to guess about, unsure if the patient was even awake. They didn’t mind the silence. But they knew clowns could be terrifying, and that worried them.

“How do we know we’re not doing harm?” said Donnelly. “How do we know our presence is even welcome if they can’t show us and can’t say anything?”

Therapeutic Clowns
Donnelly and Araujo at the hospital. (Jamie Burnett, who personified Ricky and was a previous therapeutic clowning partner of Donnelly, died in 2012.) Chloë Ellingson for STAT
Therapeutic Clowns
Donnelly and Araujo warm up before visiting children. Chloë Ellingson for STAT

These were questions they couldn’t answer, so they wandered up to the research floor to find someone who could. The clowns found themselves crammed with a few scientists into a postdoc’s windowless office. What emerged from their discussion was at once reassuring and dismaying: The researchers were just as stumped as they were. “We could all empathize with each other about the difficulty of interacting with these kids,” recalled Stefanie Blain-Moraes, who was then a Ph.D. student in engineering.

Looking back now, over 10 years later, Blain-Moraes pinpoints that impromptu meeting as the catalyst for one of her signature inventions: an algorithm that, when paired with a biosensor, produces something she calls biomusic. She hopes it might let parents and clinicians tap into the emotions these children aren’t able to communicate.

Even while the device is still in development, parents see biomusic experiments as an opportunity not to be missed, the rare lens through which they might catch a glimpse — however fuzzy — of their kids’ inner worlds. All of that emerged from an encounter between some clowns and a Ph.D. student caught in the existential wilderness of a dissertation project gone awry.

By then, Blain-Moraes had already spent years of her doctoral research trying to decode what these kids might be feeling. She knew that spikes in emotion often came with physiological changes — a prickle of sweat, a quickening pulse — but she was having trouble observing those signals in kids with profound disabilities. She had tried repeating the kids’ names over and over again, mimicking canonical psychology studies. No luck. She had asked parents to bring in objects their children liked or hated: A beloved toy dinosaur or a dreaded toothbrush, she figured, would provoke enough of an emotional response for her machines to pick up a bodily reaction, too. But she was getting nothing.

Now, as if in response to her frustrations, these clowns had appeared — a super-stimulus if there ever was one. And when they performed for kids who’d been wired up with sensors, Blain-Moraes saw exactly the kinds of reactions that had been eluding her. “We were getting enormous changes in children who were — well, people thought they were in a vegetative state, which means they are unconscious and unable to perceive the world,” she said. “But they were having very distinct signatures in their body as a result of the presence of these clowns.”

These kids, some of whom seemed asleep, were responding to the goings-on around them.

She was so excited that she ran down the hallway, printouts of graphs fluttering in her hand. She was breathless to share the results. Yet parents and staff members were mostly nonplussed. All they saw were a bunch of meaningless dots.

Dr. Stefanie Blain-Moraes
Stefanie Blain-Moraes, at the Centre for Interdisciplinary Research in Music Media and Technology, housed at McGill University. Mikaël Theimer for STAT

Blain-Moraes had come to Holland Bloorview looking for a glimpse of human interaction. She’d spent three undergrad years at the University of Toronto, among the equations of the engineering department, and though she loved the certainty of math — “the clockwork,” as she put it — something was missing. “It was very logical: no room for subjective experience, no room for artistry,” she said. She had almost gone to music school. She remembered being 7 and strapped into the backseat of the car, kicking out the fanfare-like rhythms when her mum slid Beethoven’s Ninth into the tape deck. In math competitions, she’d been quick to the buzzer, but in church choir and school band, she’d felt at home. It was only when she heard a talk by a Holland Bloorview researcher that she knew she’d found the engineering equivalent.

She became both an undergrad researcher and a volunteer, spending time in the complex continuing care unit, where the sickest kids lived. It was a realm of beeps and alarms, of nurses keeping constant watch, of lives sustained by the whir of machines. “They weren’t able to communicate well with their families, but still were very loved, very cherished,” she said. “Their families really, really wanted to maintain the relationship with them.”

That wasn’t always easy. The inability to interact can, over the course of years, trigger a whole cascade of other losses. Relationships falter. Families get burned out. Caregivers forget, for a moment, that they’re providing care for a living, feeling person. “One family told us it’s a crime to keep their son locked in a body with no expressive communication,” said Tom Chau, vice president of research at Holland Bloorview, the speaker who had first sparked Blain-Moraes’ interest in the hospital and would eventually supervise her Ph.D. “It’s a crime, a violation of human rights.”

Most of the kids at Holland Bloorview had some modicum of movement enabling a baseline of communication. It might have been an eye blink, as it was for Jean-Dominique Bauby, dictating “The Diving Bell and the Butterfly,” letter by letter while the alphabet was spoken aloud. It might have been a shift in gaze, steady enough to control the cursor on a pupil-tracking computer. It might have been a muscle twitch, or a finger flick, or a bent toe that could be hooked up to a switch. As frustrating as it could be to learn these techniques, they were enough to let someone navigate through icons on a tablet, build sentences, express wants.

Still, for some, even that remained inaccessible. An injury might have left them without the sensory or cognitive capacities to pick out words or images on a screen. Their abilities might wax and wane. Kristi Peak-Oliveira, who manages the assistive technology program at the nonprofit Easterseals Massachusetts, remembers one woman whose neurologist thought she was minimally conscious even though her family had videos to show that she could — painstakingly, with fierce concentration — move her eyes to express herself.

“That’s the kind of thing that keeps you up at night,” said Peak-Oliveira. “I look back over my career and I think, ‘Oh my gosh, did I miss someone, was there someone I didn’t think could do it?’ What a horrible, lonely existence that would be.”

Those are the people Blain-Moraes focused in on, the ones who are, by her account, “at risk of loss of personhood.” Families might not use such language themselves, but they have a keen interest in the increased interactions that Blain-Moraes is hoping to create.

Xavier
Xavier and his parents, Mélissa and Pierre-Alexandre, in their home outside Montreal. Joannie LaFrenière for STAT

Pierre-Alexandre and Mélissa, who asked that their last names not be used, are a case in point. They live in Île-Bizard, a suburb northwest of Montreal, with their 3-year-old son, Xavier. They still don’t quite know why it happened when it did — the inscrutable rhythms of biology or the toss-up of chance — but on Dec. 23, 2016, the day the family’s Christmas holiday was supposed to start, Pierre-Alexandre got a call as he was driving to pick up Xavier from day care: Xavier wasn’t waking up from his nap.

Pierre-Alexandre arrived at the same moment as the firefighters. There wasn’t much they could do until the ambulance arrived. Xavier had had seizures before, and his parents figured that this one wasn’t much different. They had no idea that his brain would be going haywire for weeks, a continuous electrical storm inside his head. They had no idea that anticonvulsants would have so little effect.

To try to stop the seizures, the doctors put Xavier in a coma. His body was a tangle of equipment, a feeding tube threaded in through his nostril, a crown of electrodes covering his scalp. These machines were the parents’ only point of contact: They checked devices tracking his vital signs, watched the curve of electricity inching across the screen of the EEG. They learned to recognize, from these squiggles, when his seizures were especially intense. “It was like a photo of what was going on inside his head,” Pierre-Alexandre said.

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Later, as the holidays became the depths of winter, Xavier woke up. He seemed better. He could raise his head a little. He could almost lift himself on all fours. Then, the seizures started again, and he couldn’t do much of anything. By the time they figured out a diagnosis — a genetic disorder called Alpers-Huttenlocher syndrome, in which the body’s molecular engines stall, tripping up a number of organs — there wasn’t much to be done. The effects looked like those of a stroke: whole swathes of blood-starved brain where tissue had begun to die.

His family was dealing with exactly the kind of issue Blain-Moraes was hoping to solve. “There’s no way to cure him. There’s no way to repair the damage done to his brain,” said Pierre-Alexandre. “So, in the future, what we can hope for is to keep him in a state without suffering as long we can.” A way to better read his body and decode his needs would be useful; an expression of his inner world would be astounding.

Right now, Pierre-Alexandre explained, “communication with Xavier is very, very tenuous — if it’s there at all.” To detect discomfort, they look for hints in what little movement he has. His eyelids often say whether he’s asleep or awake, though they sometimes settle at half-mast, making it hard to know for sure. When he’s having a seizure, one side of his face contracts — a potential emergency signaled by a tiny half-smile. He vomits. He gurgles. His parents monitor his heart rate for clues.

Holland Bloorview
A child’s bed at Holland Bloorview Kids Rehabilitation Hospital. Chloë Ellingson for STAT

Blain-Moraes often did her best thinking in the woods out behind the hospital, where the trees grew thick enough to form a lattice against the sky. There were burbling streams, and if you walked far enough, horses snuffling in a stable. It was while meandering along those paths, not long after the experiment with the clowns, that the idea began to coalesce.

Visual graphs were so sterile, such a clinical way of decoding human interaction — like a kiss by Morse code. She needed a medium parents could experience right then and there, one that would enhance their time with their children, something intuitive.

The obvious answer was music. She would program a gizmo to translate, in real time, these kids’ inner fluctuations into sound, so parents and caregivers could listen to the reactions their kids couldn’t otherwise express.

Blain-Moraes saw obvious parallels between our most basic bodily functions and the classical music she’d learned as a kid. Heart rate would dictate tempo. Breathing mapped onto articulation: staccato notes for short breaths, legato phrases for long ones. Sweat levels would drive the melody, while skin temperature would shape the chords underneath.

It sounds easy, a kind of auditory paint-by-number, but the correlations got complicated fast. If someone started to sweat, increasing their skin conductance by 0.05 microsiemens, how much should the melody rise? How did skin temperature have to change to prompt a chordal shift? The visceral quality of music was both a blessing and a curse, and Blain-Moraes needed to be careful. She was co-opting biological patterns to glimpse these kids’ inner worlds, but she didn’t want our myriad associations with music to convey emotions that weren’t necessarily there.

“We didn’t know what these kids were feeling, we didn’t know what they were thinking, and music is so good at conveying emotion,” she said. “We didn’t want to change from major keys to minor keys, even though that’s a very salient change that would be easier for your ears to pick up. We didn’t want to imply that someone was happy, and now they’re sad.”

Likewise, she worried that particular instruments would be too closely linked to certain states of mind. Brasses might be heard as brash, violins as screechy, cellos as mournful.

Blain-Moraes and a programmer friend spent months in the lab, looping the sensors around their own fingers, feeding their data into a music program and listening to what came out. The software came with a menu of timbres to choose from — like selecting the “oboe” or “pipe organ” setting on a keyboard — but none of them seemed quite right. “We had exhausted all the traditional instruments, and we were desperate,” said Blain-Moraes. “So we tried ‘Goblins.’” It was perfect — sustained and a bit voice-like, but with any preconceived emotional content synthesized away, a sonic blank slate.

To make sure the algorithm was right, they tested it on each other. They played games, Blain-Moraes standing at the door, her back to the room, trying to figure out — from the idiosyncratic music built of blood, sweat, temperature, and breathing — who was wearing the device.

Then, one afternoon, a researcher named Shauna Kingsnorth was wearing the sensors, her music so calm it was almost flat. Blain-Moraes was in the lab, distracted, looking elsewhere, when a sudden swoop in the soundtrack caught her ear. “The music just went crazy,” Blain-Moraes said. “I had thought she’d fallen out of her chair.”

But when she turned around, Kingsnorth was exactly where she’d been seconds before. “I said, ‘Shauna, oh my gosh, what happened?’” Blain-Moraes recalled.

Kingsnorth had glanced at her watch and realized, with a jolt, that she needed to pick up her kids. That everyday anxiety gave her a very physical response, with an unmistakable echo in the music. The contraption was ready for a clinical test.

“When we learn that some people who have no means of moving and speaking are actually aware, the inevitable question from clinicians, from family members is, ‘Now what?’”

Stefanie Blain-Moraes, McGill University

Around the time that biomusic was taking root at Holland Bloorview, medical researchers elsewhere were busy revamping what everyone thought they knew about injured brains. By some accounts, the shift began in July 2005, in Cambridge, England, when two different cars hit the same 23-year-old woman as she was crossing the street. The resulting damage was profound: Five months later, she was still unresponsive and met the criteria for being in a vegetative state.

But when neuroscientists slid her into a functional MRI machine, which monitors brain activity by tracking blood flow, they noticed something strange. Though she couldn’t give them any outward signs, it seemed she could hear, understand, and follow their instructions within her brain. They told her to imagine playing tennis, and blood rushed to the cortical areas involved in whacking a ball across a court. They told her to picture walking through her house, and her parahippocampal gyrus lit up as if recreating those familiar rooms.

As Adrian Owen, the first author of that study, now a professor at Western University, in Ontario, put it, “Lo and behold, hallelujah, she was responding every time we asked her to” — and her responses were indistinguishable from those of healthy volunteers doing the same tasks.

Owen had been scanning brains since 1997, looking for signs of covert consciousness; in a brief 2006 paper about the 23-year-old, his team said they’d finally found it. “Up until then, it was assumed that all patients who appeared to be in a vegetative state really were unconscious,” said Damian Cruse, a research psychologist at the University of Birmingham, in England. “What you saw was what you got. … That paper was the first evidence that how conscious someone appeared to be wasn’t necessarily how conscious they really were inside their head.”

Spurred on by Owen’s one-page report in Science, other specialists in both EEG and fMRI began looking for and finding similar results. When, in 2009, Belgian researchers re-examined patients reported to be in a vegetative state, they found that 41 percent had been misdiagnosed. To some, the very diagnosis of “vegetative state” already had dismissal baked into it; the botanical association implied that to be human, one had to be aware. Now, it turned out that doctors weren’t much good at detecting awareness in the first place, and were writing off patients as unreachable when they were actually conscious.

That was exactly the kind of thinking Blain-Moraes wanted her engineering to combat, and in 2010, Ph.D. in hand, she left Holland Bloorview, and her hometown of Toronto, to go looking for better ways of uncovering consciousness.

As a postdoc at the University of Michigan, she spent her days in the operating room, fitting EEG caps onto volunteers, monitoring the electrical crackling of their neurons as an anesthesiologist put them under. She spent her nights thinking about biomusic. She slipped the finger sensors onto her husband and their infant. She wore them around the house. She applied for grants she didn’t get.

“It was my baby, I had conceived of it, I saw the power it had,” she said. “It wouldn’t let me go.”

Before she’d left Holland Bloorview, Blain-Moraes had helped set up the first ever clinical experiment in biomusic. She and her team had figured out how to loop the sensors onto fingers and around chests, to measure sweat, blood flow, skin temperature, and breathing. They knew how her algorithm would convert any fluctuations into sound, immediately audible through speakers. They’d found three participants, all of whom relied on ventilators to keep them breathing, nasogastric tubes to keep them eating, wheelchairs for the occasional moments spent outside of their hospital beds. Their parents had given consent.

But Blain-Moraes was in Michigan for much of the trial itself. She obsessively checked for data uploads when she was home from work, poring over them as the golf course outside became invisible in the dark.

Medical research is usually an anonymous affair, with participants stripped of their identifying details, given numbers instead of names. For biomusic, though, the idiosyncrasies were the point: Measuring effectiveness meant probing family bonds, listening for the quirks that made each resident unique. The scientists gave the kids nicknames — Thomas, Fred, and Joanne — but the people who cared for them were the focus as much as the children themselves.

Then, midway through the study, Fred died. For Blain-Moraes, the loss was personal. She had seen this boy every week for six years. She didn’t know the ins and outs of his story — she didn’t ask families for personal details — and his personality was hard to describe, as he was one of the least responsive children on the unit. Still, she knew him.

The biomusic sessions went on with the other two. Blain-Moraes kept checking for data, wondering whether the device was allowing for any sort of meaningful interaction. One staff member reported that the sounds were “a little bit disturbing.” For others, though, the biomusic turned out to be profound. Thomas’ father didn’t want his son’s music to stop. “It makes me think of the lively boy before,” he told the researchers. “The sound represents his character. … The sound keeps on; it feels like my son still exists.” Joanne’s mother heard those synthesizer swells as a kind of firsthand evidence — experiencing changes in her daughter’s state without having to hear about it from a doctor.

There was one comment, from one of Joanne’s caregivers, that Blain-Moraes can still recite almost verbatim, nearly a decade later. It came from someone who’d spent 10 years caring for Joanne, who admitted that sometimes her daily duties had become rote. “The nurse had come up to her and was sort of doing her regular care, and heard the biomusic change … she stopped, and said, ‘Oh, my God, this is a person.’”

Sound designer Florian Grond shows participants how biomusic works. Produced at Spectrum Productions

One gray morning four years after those first experiments were published, not long before the Montreal Science Center would open for the day, Blain-Moraes slipped through the metal curtain that had been pulled across the entrance. She walked upstairs, shoes echoing in the empty exhibit halls, and stopped at what looked like a jazzed-up photo booth.

The association wasn’t entirely wrong. Instead of capturing grimaces and grins in a flash of light, the museum display took a portrait of visitors’ autonomic nervous systems at work. It was the result of an unusual deal between Blain-Moraes and the curators. They got an interactive exhibit about a nifty form of biomonitoring; she got the chance to collect data that could help solve biomusic’s most pernicious problem.

The device had morphed since January 2016, when she’d become an assistant professor at McGill University in Montreal. All those different sensors had been swapped out for a single device: When clipped on, it looked like a finger-puppet of a giant beetle. Its measurements were now routed into a smartphone, by Bluetooth. With the help of a dada-inspired artist and sound designer named Florian Grond, her classical-influenced “Goblins” had been replaced with a more elemental vibe. Biomusic can now be heard as fire crackling, bells ringing, cats purring, even bacon frying — biofeedback for any sonic persuasion — and there are now many more users with many different persuasions.

Florian
Sound designer Florian Grond holds the sensor that is used to create biomusic. Mikaël Theimer for STAT

Of the 30 or so people testing the device, some have dementia while others are on the autism spectrum. Hunter McLean, for instance, is sometimes blindsided by panic attacks that can involve hyperventilating and screaming on the floor, and sees biomusic as a potential early warning system: “It made me feel more inside of my body,” McLean said.

Yet, for those, like Xavier, who can’t otherwise communicate, biomusic comes with the twin risks of revealing too little and too much. On the one hand, it’s hard to know, when you hear a sweep of sound, what that user might be feeling — and that’s where the museum exhibit might just provide some help. Blain-Moraes hopes that 100,000 visitors will watch videos inside the booth, reporting their emotions while a sensor reads their physiological signals. From this vast pool of data, she might be able to train a computer to interpret the meaning of biomusic when users can’t say what they’re feeling.

On the other hand, even if machine learning can help pick out specific emotions from someone’s biomusic, it’s impossible to tell if that’s something the person wants to share. Blain-Moraes knows firsthand how uncomfortably intimate those sounds can be. It hit her especially hard when she gave presentations hooked up to a sensor, with her biomusic playing for everyone in the room.

Everything was fine, she said, until she started taking questions from the audience. Outwardly, she kept her cool, as she usually does, but her biomusic told a very different story. “It gets really agitated, and then the crowd laughs and then I get embarrassed,” she said. “I stopped presenting with biomusic on, because in that moment, it’s insight into a state that I don’t want other people to see.”

Xavier can’t just switch off his biomusic. Nor can someone in his position tell his parents what he wants them to glean from his body’s signals.

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Some worry biomusic might give families false hope. “While I’m sleeping you could create signals of my stomach digesting my dinner; that’s not a meaningful expression from me,” said Laura Specker Sullivan, a bioethicist who teaches at the College of Charleston, and who is familiar with Blain-Moraes’ work. “As long as the family knows that that doesn’t necessarily mean the person is intentionally producing those sounds, then I think that’s fine.”

Blain-Moraes knows these risks. She’s become a sought-after machine-learning whiz, training computers to recognize the electrical crackle of awareness in the brain; she knows, perhaps better than anyone, that biomusic cannot be used to detect covert consciousness. She knows that EEGs and fMRIs are not yet the consciousness quick-tests that clinicians might want. But she also knows that such analyses of blood flow and electricity inside our skulls are getting sharper and sharper — and they might become more meaningful when paired with the older, humbler rhythms that biomusic is built on.

Our lungs filling with air, our veins ticking with blood — these are the unthinking actions that keep us alive, the involuntary motors of fight or flight. They’re coiled so deeply within us we hardly know they’re happening. In some ways, they’re a bit like music, meaningful and mystifying in equal measure.

“When we learn that some people who have no means of moving and speaking are actually aware, the inevitable question from clinicians, from family members is, ‘Now what?’ Blain-Moraes explained recently. “Biomusic is one of the ways that we can develop an interaction, it’s one of the answers to, ‘Now what?’”

Xavier
Xavier in his bed at home. Joannie LaFrenière for STAT

“Ah, listen,” said Pierre-Alexandre, nodding toward Xavier.

It was a humid afternoon in August, and the 3-year-old lay on a bed in the family’s living room. During most days, this was his world: a mound of pillows, a pole hung with medical equipment, a plush panda keeping constant watch.

Just when Pierre-Alexandre had switched off his son’s inner soundtrack, Xavier had begun to babble. It was his usual mix of nonsense syllables and guttural whimpers.

“That’s the kind of sound he makes. We don’t quite know what he wants to tell us,” said Pierre-Alexandre, from the couch. “What we often understand comes from the moment when he makes it. Like just now, we turned off the music and he made a noise. Does it mean he is happy we turned off the music? Or that he isn’t happy? We don’t know.” The father laughed, as he often does, the good-natured laugh of someone who knows that such things are beyond his control. “Or maybe it’s that he’s completely awake,” he added.

“At the same time, it might be what we’re saying,” said Mélissa, sitting beside him on the couch. She spoke in a murmur, as if she didn’t want Xavier to hear.

“That’s it,” said Pierre-Alexandre, “we talk and we get the impression that he understands some of what we’re saying, because he makes sounds that seem sort of linked.”

Their days mostly revolve around Xavier’s needs. Every morning, Pierre-Alexandre wakes at 3:30 or 4. Xavier has been feeding all night, a slow drip of milk-like liquid pumped in through a tube in his abdomen. After a few hours out of the fridge, the stuff becomes pasty, and so his dad needs to change the bag. He’ll change his diaper at the same time, and give him the first of five daily doses of medication before driving to work.

Mélissa left her teaching job when it became clear that Xavier wouldn’t recover, and she takes over for the rest of the day, clearing blockages in his abdominal tube, suctioning out his airway secretions, filling syringes with drugs at the appropriate hours. She sews and knits while keeping watch: Pillows filled with buckwheat hulls to keep Xavier comfortable. An absorbent pad decorated with monkeys to fit around the port in his belly. Frilly dresses for her nieces.

The only thing that allows them both to sleep at night is the pulse oximeter, a machine that clips onto Xavier’s big toe and measures his blood oxygen levels and cardiac rhythm. If he vomits, or falls out of the position his parents have carefully placed him in and his face winds up in the sheets, the device picks up the drop in oxygen and sounds the alarm.

“If it weren’t for the machine, he would be dead with his airways blocked,” Pierre-Alexandre said. “The machine rang and I woke up, I repositioned him, and that’s what’s kept him alive. It’s happened a few times.”

Xavier
Xavier, with the biomusic sensor clipped to his hand. Joannie LaFrenière for STAT
Xavier
A pole holding medical equipment next to Xavier’s bed in the living room. Joannie LaFrenière for STAT
Xavier
The abdominal port through which Xavier’s parents give him food and medication. Joannie LaFrenière for STAT

What has saved his life has also augmented what little communication they have with their son. They know that when his heart rate is below 120 beats per minute, he’s calm, maybe sleeping. When it’s above that, he might be awake and alert. “I looked at it this morning, and it was around 145, 150, and that was because he felt the need to throw up. It’s even happened that he’s been above 200,” explained Mélissa, “and that was because he had a fever.”

“For sure, there are lots of people with intellectual disabilities that cause issues with communication, but for us it’s a little more advanced,” said Pierre-Alexandre. “They can make signs. His level, it’s …” He paused, looking for the right word.

“Zero,” Mélissa offered.

So when they heard about biomusic from a nurse at the Montreal Children’s Hospital, it seemed like a chance they couldn’t pass up. It wasn’t just that Pierre-Alexandre comes from a family of engineers, born with a penchant for tinkering, but also that there wasn’t much else that might help. If the technology still wasn’t perfect, at least they could help make it better.

“We want to spend time with him, we want to take care of him,” Pierre-Alexandre said. “A project like this can help us stay motivated.”

Normally, the sensor clips onto an adult finger. The best they can do for Xavier is to place it in the palm of his hand, held in place with a sweatband. Now, as the afternoon drifted slowly into evening, they clicked into the program on an accompanying smartphone. The screen filled with the squiggles of Xavier’s body as the sound of water filled the room. That was the soundtrack currently being tested, like a burbling stream that fluctuated with the rhythms of sweat, temperature, and pulse.

Pierre-Alexandre pointed out a spike on the electrodermal activity graph. “We see that suddenly he started to sweat,” he said. “If I’m not mistaken, that corresponds to the moment when I pushed the medications into his belly.”

He put his fingertips on Xavier’s cheek, and it seemed like there might be a change in the soundtrack, as if, for a moment, the tiny gurgle of a stream in winter had taken on the runoff of spring. It receded again. There might have been another swell when Xavier’s eyelids fluttered.

The parents sat on the couch, listening. Was that a slight crescendo when Xavier whimpered? It was hard to know exactly what they were hearing.

“We just hear water,” said Mélissa. “Makes me think of a waterfall. Or a cascade. Or even waves.”

 

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  • Is there any way to determine if any of the persons who are sealed within their own bodies, but conscious, are functionally able enough to understand and respond to requests like the “23-year-old woman” discussed did? If so, then perhaps those persons can learn to utilize their functions in a biofeedback kind of way. It could be a time-consuming process to learn to control their functions in such a way that their beloveds and caretakers can interpret. True communication, in other words. It may not have the strenuous, combative quality that the relationship between Heller Keller and Anne Sullivan had before their breakthrough, but it would require effective techniques and patience. Not only do the beloveds and caretakers have to learn to recognize the efforts of the imprisoned, but the imprisoned have to learn to recognize what the beloveds and caretakers can recognize.

    This is the baby-steps phase of using the sensors. Remember what was said in the film “Awakenings”, based on the life of Oliver Sacks and his experience with encephalitis lethargica patients of the 1920s —

    “What goes on inside [the mind of Leonard, an afflicted character]? Is he thinking in there? Of course not, a neurologist says [ … ]. Why not? “Because the implications of that would be unthinkable.” Ah, but the expert is wrong, and inside the immobile shell of his body, Leonard is still there. Still waiting.”
    https://www.rogerebert.com/reviews/awakenings-1990

  • Part of what this story brought to my mind is the question of whether people sit at the bedside of these kids and tell them stories, the way we do for kids in general, especially at bedtime.

  • My son is severely disabled after birth suffocation. He is now 18. I am an artist and make work about our life together. I use much of his medical supplies in my pieces. I’ve worked with several kids and their families as well and the rule has always been that we must assume a child understands us; Our actions and conversations should consistently reflect this assumption. Biomusic is absolutely brilliant!! I understand the complications and difficulty in knowing what the sounds mean, but it’s enough (for now) that the biomusic is an expression of LIFE that is too easily underestimated. This broadens human understanding of and definition for life to include levels of experience that may be profoundly sensitive albeit subtle. This can heighten all of our levels of awareness and change future behavior in caretaking and research 💜💜 It is very exciting work! Thank you for sharing.

  • This is profound and reinforces the idea that life is so precious and unique. Hopefully this type of information can help us do a better job of truly caring for those who cannot communicate.

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