For kids with cerebral palsy, quality of life is paramount

Ben Shore, MD

When people hear the term “cerebral palsy,” they might envision a specific illness with very particular symptoms. But cerebral palsy (CP) is actually a broad term that covers several different disorders, so kids with CP have a wide variety of symptoms and experiences—and many different abilities.

CP is a chronic, lifelong condition that involves an injury or disruption to the brain, which affects communication between the brain and the muscles. Sometimes it is congenital and can cause uncoordinated movements and postures. Other times, it occurs as a complication of another condition, like premature birth, low birth weight or neurological trauma. Often, it occurs for no identifiable reason.

At Boston Children’s Cerebral Palsy Program, our specialists cover all ranges and stages of care to ensure the highest quality of life for every patient. With a multi-disciplinary team of orthopedic surgeons, neurologists, neurosurgeons, physiatrists, complex care/developmental pediatricians, physical and occupational therapists, our specialists work together in one clinic to provide comprehensive care for children with CP. Families also have access to a full range of support services, including social work, educational materials and community resources.

Giving kids a better quality of life means giving them the best care possible. “All of us (physicians) in the program have an ongoing dialogue about each individual patient, and those combined perspectives help provide much more comprehensive, well-rounded care,” says Benjamin Shore, MD, orthopedic surgeon at Boston Children’s CP Program.  “Plus, we make sure the patient can see multiple doctors on the same day, so they can spend less time at the hospital—which all kids like.”

Kalli

Kalli Moran: Positively active

Though Kalli Moran—a high-energy 10-year-old from Cape Cod—wears a leg brace during the day and a cast at night, her mild case of CP rarely interferes with her active lifestyle. From texting and talking to her friends through FaceTime on her new iPod touch, to ice skating and having sleepovers with her classmates, Kalli is a busy, happy girl, who happens to also be a patient at Boston Children’s Cerebral Palsy Program.

Kalli’s mother, Deb, takes her into Boston Children’s for her appointments, where she’s been coming since she was just over a year old. “All of Kalli’s doctors have always been so personal with me, no matter what she’s going through,” says Deb. “They’re not just throwing words at me, they take the time to explain everything in human terms.” In addition to surgery to lengthen tendons in her leg, Kalli also occasionally gets Botox injections to loosen her tendons and help her muscles stretch, which helps her feel better, and helps her participate in the activities she loves the most.

Though most kids might be scared to undergo these procedures, Kalli’s experience has been as positive as her mom’s, and her attitude about her treatment is unwavering: “I know a lot of people there, like Dr. Shore and Dr. Nimec, so I get to say hi to them,” she explains. “I’m used to the Botox injections now; I don’t get scared about going or anything. I just feel better.”

“Kalli doesn’t think about things that slow her down,” says Shore. “We just gave her a cast after her Botox injections, and she’s focused on getting it off as fast as possible so she can go on her school trip,” says Shore. “It’s fun to take care of kids like that—they have good outcomes because they want to have good outcomes.”

Now, Kalli loves to practice gymnastics in her back yard and ride horses in the summer. At school, Kalli’s favorite activities are going to gym class, exploring the library and playing music. “I don’t treat her like she has cerebral palsy,” says her mother. “I don’t restrain her from trying things she likes.” Fortunately, Kalli’s list of “likes” is growing as fast as she is.

Chris Lever: A loving big brother

Chris

Chris Lever, a 17-year-old from Everett, Massachusetts, has been cared for at Boston Children’s since he was a baby, and is now growing into a happy young man. Due to the severity of his CP, his physical activities are limited, but he has a fun sense of humor, loves hanging out in his comfortable position on a bed or couch with his iPad, and is glad to play the big brother role to his four-year-old sister, Marjorie, who likes to be involved in Chris’s medical care. “The way he handles life is admirable,” says his mother, Andrea. “His will to live is so big, and what he’s been through would probably break other people. But he sits there and smiles and tries to be as happy as possible.”

Chris is at Boston Children’s quite regularly, and his care team goes the extra mile in making sure that he’s accommodated during his visits. Because of his level of involvement, certain considerations have to be made for him that might not have to be made for other kids. For example, since Chris is quadriplegic, it can be difficult for him to ride in Andrea’s car, so Boston Children’s sends an ambulance to pick him up for his appointments, helping him arrive safely and comfortably. “We’ve been doing that for about two years, and it’s so helpful,” says Andrea. “Since then, he’s been able to make every single appointment.”

When he’s at the hospital overnight, Chris’s nurses know him by name and make sure his personal needs are met. “When he’s on 11 South, he likes to lay at the foot of the bed because it’s more comfortable for his scoliosis,” Andrea explains. “Now, the nurses don’t even wait for him to ask. As soon as they know he’s coming in, they set up his bed the way he likes it. They really don’t have to do that, but they do. They go the extra mile.”

Chris’s recent hip surgery, done by, has helped him go the extra mile too. “Since his surgery, he’s been doing things he hasn’t done in two-and-a-half years,” says Andrea. “He feels less pain now, so he’s been sitting up and stretching a lot on his own.”

“Every patient has personal milestones that are really important for both them and their families,” says Shore. “It might not seem like a big thing to some people to be able to sit in a chair comfortably. But for Chris, it was huge. And that is the hope of everyone here—to better these kids’ lives by customizing care to their personal level of needs.”