For a month, Nikki Puzzo walked around with a hockey puck strapped to her torso. But this mother of two wasn’t just being silly or exhibiting her love of sports. Instead, she was demonstrating solidarity with her younger daughter, Stella. The little girl, who has spastic diplegia cerebral palsy (CP), had a device called a baclofen pump implanted into her abdomen. “I wanted her to feel more comfortable and know that she wasn’t alone,” explains Nikki.
Like many kids with CP, Stella has spasticity, or severe tightness and stiffness, in her leg muscles. A medication called baclofen — typically taken orally — can help treat spasticity, but Nikki and her husband, Stephen, noticed that the drug had some unwanted side effects: Although it eased muscle contractions in Stella’s legs, it also loosened muscle tone in her abdomen, which was already relatively weak.
As Dr. Brian Snyder and the rest of Stella’s care team in the Cerebral Palsy Center at Boston Children’s Hospital planned for an upcoming surgery to treat her hip dysplasia, they suggested that switching to a baclofen pump first might make her recovery go more smoothly. “The concept was a little scary,” Nikki admits. “But we knew it would have a greater benefit for her in the long run.”
Three years later, the pump is paying off. “I like that the baclofen pump only affects the parts of her body that need the medicine,” says Nikki. “Because the device is internal, it’s easy to worry about it getting damaged if Stella falls, for example,” she says. “But Kristin Buxton and the rest of the team in the hospital’s Baclofen Pump Program always set my fears at ease.”
Paying it forward
The pump has been instrumental in helping Stella stay active, but it isn’t the only innovation that’s helping her thrive. It’s been said that necessity is the mother of invention, but in Stella’s case, her mom really is the inventor. Twice, Nikki has worked with her daughter and others to create products that can help Stella and other kids with physical challenges enjoy life to their full potential.
When the family relocated from Charlestown to Swampscott a few years ago, Stella and her older sister Chloe fell in love with the ocean. But lugging two kids, snacks, towels and accessories to the nearby beach — all while worrying about Stella’s wheelchair getting stuck in the sand — was challenging. As a surprise, Nikki’s father, a retired engineer, built Stella a rugged kid-size beach buggy based on the measurements of her wheelchair. Now she could comfortably travel over sand, snow and other terrain without damaging her wheelchair.
But Stella’s special present has since benefited hundreds of other children. Inspired by the positive feedback she got on her buggy, her grandfather went on to create additional all-terrain buggies, which the family provides to eligible kids free of charge through their nonprofit, Stepping Stones for Stella. Nikki has also collaborated on zipOns, pants that can completely open on the sides to accommodate casts — a creation she says was a “game changer” for Stella while she recovered from hip surgery. “These things have made her life so much easier,” Nikki says. “It’s something we wanted to pay forward to other families.”
In good hands
When it comes to care, the Puzzos have found that having a medically complex child is easier when clinicians strive to make everyone feel comfortable. Over the years, Stella has seen a slew of experts at Boston’s Children, including Dr. Elizabeth Barkoudah, Dr. Donna Nimec and Dr. Snyder. “We like how everyone works together for Stella and communicates with each other,” explains Nikki. “We know she’s in good hands.”
Now in second grade, Stella doesn’t let motor difficulties or developmental delays slow her down — she loves to play soccer, dance and ski. She even helps manage her own healthcare, keeping track of when it’s time to take her medications. “If she wants to do something, we try to make that happen for her,” says Nikki. “She amazes me every day.”
Learn about the Cerebral Palsy Center.