A laboratory at the University of Delaware’s physical therapy department looks confusingly like a daycare center. There are ride-on cars stacked along the walls. Colorful foam alphabet tiles cover a section of the floor, strewn with small toys. But what goes on here isn’t just fun and games –there’s serious scientific work being done.
A 14-month-old child sits on the soft floor, surrounded by several smiling women. She’s got plump cheeks, wide blue eyes, and tufts of blonde hair pinned with a pink bow. Her name is Sarah Grace. She was born with arthrogryposis–joint contractures in her arms. Her arms hang limp at her sides and her hands and fingers are curved towards her body. It’s a condition that affects one in 3,000 babies. If she wants to move an object, she has to sway her arms and make a scooping motion with her hands.
“For the first eight months, she couldn’t use her arms. You know, the first eight months of her life. So she had to find other ways to interact with people,” said Valarie, her mother, who requested not to have their last name used in this story to protect her daughter’s identity.
Valarie, Sarah Grace and grandmother Susan traveled to Delaware from their home in Savanna, Georgia. Every four or five months, they come to see doctors who specialize in arthrogryposis at Nemours/A.I. DuPont Hospital for Children in Wilmington.
But on these trips, they also swing by the University of Delaware. When Sarah Grace was about eight months old, Valarie signed her up to be a test subject for a pediatric exoskeleton called the Playskin Lift. Physical therapy researcher Michele Lobo leads its development.
“Exoskeletons are devices that are supposed to help people move, so for children who have muscle weakness due to a variety of problems like pre-term birth,” said Lobo. “They often need devices to lift their arms against gravity.”
The ability to use arms to reach and interact with objects is critical for more than just simple tasks like dressing, eating, or bathing. It’s also important for brain development in babies because that’s how they gather information. Many studies, including those conducted by Lobo herself, recognize that children with impaired motor skills will have significant gaps in critical thinking skills as they get older–unless they are helped by early intervention.
That’s where exoskeletons, like the Playskin Lift can help. When I meet Sarah Grace, she’s already wearing the garment. It looks like a normal white onesie with a red zipper, but the red stripes that line her sleeves contain bundled steel wires. The wires are springy, so they help lift her arms, without requiring much energy from her.
“It’s sort of like the feeling you would get like you were on a trampoline, where it’s this bouncy feeling and you want to keep bouncing up and down. That’s what you can do with your arms. It keeps springing you back up to that lifted position,” said Lobo.
The PlaySkin Lift isn’t the first exoskeleton available to help kids like Sarah Grace. Engineers have been working on the Wilmington Robotic Exoskeleton (WREX) for more than a decade. It’s an arm-shaped device that uses an intricate system of elastic bands, metal rods and plastic knobs to aid movement. WREX is effective, but Lobo says it has an achilles heel: kids just can’t be kids in them.
“It was really uncomfortable for them,” said Lobo. “So they couldn’t lay down and roll around safely. They couldn’t fit in their high chairs, they couldn’t fit in their little Megasaucer and play their toys they use all the time. So then it became a process of putting on and taking off the skeleton.”
This, over time, becomes an annoying enough process for both kids and their parents that they give up on using it. So Lobo put her energy into finding an alternative that, unlike the typical exoskeleton, is appealing and comfortable for kids and parents.
“We started trying to figure out if we can bring together fashion, engineering, and rehab and see if we can create a solution that people can wear just like a garment and that garment will support your movements,” said Lobo.
Lobo also realized that clothes needed to be fashionable for people to want to wear them. So that’s where her PhD student Martha Hall comes in.
“Is it okay for me to take your measurements?” Hall asks Sarah Grace, holding a measuring tape. “Are you shy? I won’t tell anyone your measurements.”
Sarah Grace, like most babies, grows pretty quickly, so her garments have to be adjusted quite often. And Hall makes sure to consider the parent’s input as well.
“You mentioned that her sleeves are too short?” Hall asked.
“Well, it just hits a little below her wrist,” said Valarie.
A year ago, Hall wasn’t working on anything related to physical therapy. Her master’s thesis in fashion was focused on Hollywood dresses from the 1930s. But one day she wandered into a lecture, where she heard researchers talk about wanting to use wearable technology in physical therapy.
“I approached them, and I said, ‘I was really inspired by your talk and I’d really love to help if I can,'” said Hall.
One thing led to another and she became the fashion designer for the lab, using her knowledge of fabrics to help make the Playskin Lift attractive and functional.
“Sometimes we use fabric you would use for activewear, like a ballerina costume,” said Hall. “We have a design that uses lingerie fabric, which is really cool.”
And they’ve also made versions that appeal to kids.
“You could make it look special, like if you like Frozen, we have a Frozen version. If you like Elmo, we have an Elmo version. We’ve made also a Spiderman version,” said Lobo.
The materials required to make the Playskin Lift are pretty cheap, about 10 to 30 dollars at your local craft store. That makes it a lot more affordable than WREX, which costs about $5,000 per arm.
Since the Playskin Lift is still a prototype, it isn’t for sale right now. So Lobo has posted how-to manuals online to involve more families with the project. But long-term, she hopes to make the product more accessible.
“It would be great if people didn’t have to do it themselves, like if a company could pick up on this technology and make it inexpensively and get it out to people,” said Lobo. “So that is the ultimate goal, to have things like this on the market.”
It’s not certain when the Playskin Lift will be commercially available. Getting it approved as a medical device is a long process that could make the garment prohibitively expensive. And also, the lab has only tested it on a small sample of kids — 36 kids across 15 states.
But Valarie says that, at least for Sarah Grace, it’s made a big difference.
“Before [the Playskin Lift], she never used her hands at all,” said Valarie. “And very soon after just starting with the onesie, she started realizing they were there, kind of picking up toys. When she has the wires in, she can do almost everything a child her age needs to do.”
The effectiveness of the Playskin Lift will be different for every child. And it’s likely that Sarah Grace will continue to rely on tools to help her movement for many years. But Lobo hopes that by having babies wear the Playskin Lift early on in life, they might someday be able to manage without it.