How BU Research Is Helping Infants with Down Syndrome Take Steps Toward Independence
Jana Iverson is using a mobility aid to support children’s early development
How BU Research Is Helping Infants with Down Syndrome Take Steps Toward Independence
How BU Research Is Helping Infants with Down Syndrome Take Steps Toward Independence
When Danielle Corvese was 20 weeks pregnant, she received news she didn’t know how to process: her son had a 92 percent chance of being diagnosed with Down syndrome. Corvese and her husband, Jeff, had never known anyone with the neurodevelopmental condition, which can impact how the brain and body develop.
When the Corveses’ son, Benny, was born, they were relieved and joyful—and began dreaming of him walking, playing, and going to school. Not unusual hopes for new parents—but ones that can be a little more complicated for children with Down syndrome, which Benny did have. The condition, where a person is born with an extra chromosome, can cause musculoskeletal differences, making it more difficult for children to get upright and begin moving.
In the Boston University Infant Communication Lab, researcher Jana Iverson is exploring ways to help infants with the condition keep up with their peers—with a little help from Benny. A BU Sargent College of Health & Rehabilitation Sciences professor of physical therapy, Iverson is examining whether giving infants extra mobility support can help mitigate the effects of early developmental delays. Benny is a participant in one of her studies.
“For babies with Down syndrome, or with other developmental conditions that maybe slow their progress a bit, they’re not hitting those [motor] milestones at times when we would expect them [to],” says Iverson, the lab’s director.
She and her team are using the Portable Mobility Aid for Children (PUMA), a harness system that offsets a baby’s weight and allows them to move independently with support. It helps infants with Down syndrome like Benny move while upright and transition from sitting and crawling to standing positions. By aiding the babies’ mobility, the researchers hope the system will offset the slower pace of their motor skill development, “supporting exploration and social interaction, and creating rich opportunities for play and learning,” says Iverson.
Getting the freedom to explore their surroundings can enable children to communicate and engage with the world around them. “Play is how children learn,” Iverson says. “What really is important for children is the opportunity to play and to play in ways that are developmentally appropriate. So being upright and moving is a really key part of the early years. Being able to do that, to have that experience, is a critical developmental opportunity.”
One thing that makes this study different is that there’s an emphasis on understanding how infants with Down syndrome use their skills in their everyday environment, Iverson says. That focus is important, because “we really see the PUMA as a tool that can be used at home.”
For the Corvese family, Iverson’s research has given Benny, now an enterprising toddler, independence to interact and bond with his siblings in ways he couldn’t do previously. His parents say it’s incredibly rewarding to see all the progress their son has made, and how it can benefit families and kids with Down syndrome in the future.
“Benny is such an inspiration. He inspires me every day, and I can’t imagine what he’ll be able to do in the future,” Danielle says. “Benny’s journey is a big barrel of hope.”
In the video above, watch Benny use the harness system to play with his parents and see Iverson’s team at work in the BU Infant Communication Lab.
This research is funded by the National Institutes of Health’s Eunice Kennedy Shriver National Institute of Child Health and Human Development and the National Center for Advancing Translational Sciences/BU Clinical & Translational Science Institute.