Teamwork and toughness: Living with cerebral palsy

María Sordo cerebral palsy Thriving lead image

Growing up in Querétaro, Mexico, María was an exceptionally bright and inquisitive child. At just 18 months old, she spoke at the level of a 6-year-old, and could even sing the tongue-twisting “Supercalifragilisticexpialidocious” song. Her parents marveled at her intelligence at such a young age, but there was something in her development that seemed off.

“At 1 year, she wasn’t crawling well and had difficulty standing,” her mother, María José, recalls. “She hadn’t learned to walk by 18 months, and she would crawl by pulling her two legs at the same time — like a little bunny.” Her parents knew that something was wrong, so they took her to see a pediatrician in their home country of Mexico.

A diagnosis of cerebral palsy

They would come to find that María had cerebral palsy (CP), the most common physical disability in children. CP is actually a group of disorders that affects body movement and posture due to differences in brain development, infection or stroke. Although CP is a lifelong condition that cannot be reversed, many children with CP go on to lead fulfilling lives with the proper medical care. María’s family was willing to do whatever it took to get her that care.

“In Mexico, we never received answers about Maria’s situation that gave us confidence,” María José says. Luckily, their pediatrician knew of a family from Mexico who had received care for a complex condition at Boston Children’s Hospital. María’s parents reached out to the family and then to Boston Children’s International Health Services, who arranged an appointment with Dr. Benjamin Shore, an orthopedic surgeon and co-director of the Cerebral Palsy Center at Boston Children’s.

María Sordo CP patient Dr. Shore
“María is an amazing swimmer; you can’t tell she has any disability when she’s in the water.”

María’s CP care team

María, now 8 years old and in 2nd grade, has been coming to Boston Children’s since she was 2. Her care team — comprised of Shore and Dr. Donna Nimec, a physiatrist in the Cerebral Palsy Center — sees her every six months, when she comes in for the Phenol and Botox treatments that help with her spasticity. Together, both Shore and Nimec decide on the proper “tone management” to help keep María’s muscles at the appropriate length.

Spasticity is a disorder characterized by tight or stiff muscles and the inability to control these muscles.

“For kids with CP, we create individualized care networks,” says Shore. “Depending on the needs of the child, a different group of providers is formed.” These networks can consist of up to four different caregivers, but because María is able to walk without assistance, her needs were slightly less complex. “I really love that Dr. Shore and Dr. Nimec are a team,” says María José. “They make decisions together, which is a big part of why María is doing so well.”

But as María grew, her walking gait was becoming more abnormal, as cerebral palsy affected her hips and spine. Her legs were turned in — known as femoral anteversion — causing her to trip and disrupting her balance. From the time María was 2 years old, Shore had been preparing the family for the possibility of femoral osteotomy surgery to rotate her femurs (thigh bones) so she could walk with her legs more properly aligned. The time had come.

Femoral osteotomy surgery

At the age of 7, María underwent a successful femoral osteotomy surgery as well as soft tissue lengthening to give her more flexibility. “We want to give her the opportunity to be as independent as possible within her own environment,” explains Shore.

During the initial recovery, María’s mom took her out for walks in her wheelchair. But just three days after the surgery, María willed herself out of the chair, telling her mom, “I can do this!” and began walking again. Her determination was no surprise to her parents or Shore. “She’s tough as nails,” Shore says. “She wants to get better and wants to show you how well she’s doing. María is one of the greatest patients you can ask for.”

Recovery and return to Mexico

Her parents don’t let María’s disability define her, they let her reach out beyond it. ~ Dr. Benjamin Shore

Because the family lives in Mexico, María’s care team put her on an expedited rehabilitation plan so she could get home and back to living her normal, adventurous life. The accelerated process was a big success and led the Cerebral Palsy Center to adopt a new rehabilitation pathway for all patients, even those who live nearby — allowing them to get home and back to their lives more quickly. “María and her family basically paved the way for other CP patients,” says Shore. “It’s pretty amazing.”

Just two weeks after surgery, the family flew home and María began therapy. They will be returning to Boston this summer for a checkup with Shore and Nimec. In the meantime, María will continue with physical therapy and swimming twice a week. To her, this is all part of the plan to keep doing the things she loves, like dancing and her new hobby — golf.

María Sordo CP patient golfing
María has already competed in her first golf tournament, and loves playing with her mom and dad.

“Her parents don’t let María’s disability define her,” says Shore. “They let her reach out beyond it and empower her to try different things.” Her mom credits her daughter’s toughness and resolve: “María has always treated her challenges as something normal and natural. She doesn’t believe what she has is an impediment. The truth is, she’s a champion. She falls and she gets up, but she keeps moving ahead — always.”

Learn more about Boston Children’s Cerebral Palsy Center.