See Who Inspires Us | Meet Stella

For a month, Nikki Puzzo walked around with a hockey puck strapped to her torso. But she 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.

 

Targeting spasticity

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 her parents noticed that the drug had some unwanted side effects: Although it eased muscle contractions in her 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 and Spasticity 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 the team in the hospital’s Baclofen Pump Program always sets my fears at ease.”

 

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 Children’s. “We like how everyone works together for Stella and communicates with each other,” explains Nikki. “We know she’s in good hands.”

As she enters third 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.”