Shantell Pambuan, 25, was born premature at 32 weeks gestation at Community Hospital Long Beach. Weighing only 4 pounds, 5 ounces, Shantell’s lungs were severely underdeveloped. Needing time for her lungs to grow, Shantell spent nearly a month in Community Hospital Long Beach’s NICU.
The complications with her lungs at birth appeared to have no effect on her development until nine months later when Shantell’s parents noticed she was still having problems crawling. Concerned about her movement milestones, Shantell’s parents took her to a pediatric neurologist who listened to their concerns and following a series of tests, diagnosed her with cerebral palsy spastic diplegia.
Cerebral palsy is a group of disorders that affect a person’s ability to move and maintain balance and posture. It’s caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control his or her muscles. Premature infants born with underdeveloped lungs are often at high risk for developing the disease.
Spastic diplegia, the type of cerebral palsy Shantell suffers from, causes muscle stiffness mainly in the legs, with some stiffness in the arms. People with spastic cerebral palsy have increased muscle tone. This means their muscles are stiff and, as a result, their movements can be awkward.
Eventually requiring two hip surgeries and hospitalizations, Shantell then began her journey with Miller Children’s Hospital Long Beach.
At age 12, she was referred to Dr. Kimberly BeDell, medical director, pediatric rehabilitation program, Miller Children’s, who collaborated with Shantell to treat her stiff muscles. The treatment plan included physical, occupational and pool therapy, as well as Botox/Myobloc injections, which were injected into her hamstrings every three months to help relax her muscles.
Shantell spent almost every day after school in therapy at Miller Children’s until her sophomore year of high school. “I was not always the easiest patient to work with,” says Shantell. “I was a typical teenager, but was fortunate enough to work with my physical therapist, Holly Grotbeck, who was able to see past all the sarcasm. She was very empathetic and caring – knowing that even if it didn’t always seem like it, I did care and put 100 percent into every therapy session.”
Since 1999, Holly Grotbeck, physical therapist, Miller Children’s, has developed three unique physical therapy programs to meet Shantell’s changing needs. “Our goal was to maximize her independence,” says Holly. “Early on we were very focused on her walking and transfers – her ability to move from one position to another. She had a great family network of support that brought her to therapy several times a week for so many years. Shantell is a very smart young lady and she knew what she wanted to achieve. As she got older, she got to the point where she could do everything she needed to do in her daily life without difficulty and as independently as possible.”
Together, Shantell and her care team, made the decision to take a break from physical therapy – giving her more time to hang out with friends, take part in school activities and just be a kid.
“Holly made sure I had the tools and education to be successful maintaining my range of motion and strength on my own,” says Shantell. “She created a detailed home program, empowering me to take responsibility to do all my exercises.”
After graduating from high school, Shantell returned to Miller Children’s to develop an updated treatment and therapy plan. During that time, she continued to work with Holly and several other physical therapists.
As time went on the Botox/Myobloc injections became less effective at treating Shantell’s pain and spasms. Dr. BeDell suggested she try a Baclofen Pump, which involves surgery to insert a pump that injects medicine directly into the spine. That’s when Shantell was referred to Dr. Barry Ceverha, neurosurgeon, Long Beach Memorial. Knowing the surgery might come with risks, Shantell considered her options carefully. Not wanting to put her education on hold, she decided to wait until after finishing college to have the operation – a decision that did not come easily.
In November 2010, Shantell underwent surgery to insert the Baclofen Pump. “At 23 years old, an adult patient now, I made the transition through the continuum of care from Miller Children’s to Long Beach Memorial, with great collaboration from both hospital teams,” says Shantell.
Unfortunately, there were some complications and Shantell became very ill, requiring hospitalization. “During my 10-day hospital stay, my doctors came in everyday listening and reassuring my parents and me. My physical therapists and the pediatric rehab team also reached out to me even though I was no longer their patient – offering support when I was at my lowest.”
It’s been nearly three years since Shantell’s surgery and all of the complications have cleared. She continues to receive pump refills, and with the help of her care teams at Long Beach Memorial and Miller Children’s, Shantell has all the tools she needs to move forward with her life.
Shantell graduated from California State University, Long Beach with a degree in political science, and her goal is to eventually go to law school. In her spare time, she gives back to the community by being a member of the Pediatric Rehab Partnership Council and the Patient Family Advisory Council at Long Beach Memorial and Miller Children’s.
“Since I have received such amazing care from people at all three hospitals, I was motivated to give back to this organization,” says Shantell. “I am honored to be a member of the Pediatric Rehab Partnership Council and the Patient Family Advisory Council, giving the patient perspective, as we promote patient and family-centered care together. My journey has taken me through each of our Long Beach hospitals, and I feel like we’re an extended family – a family I am proud to be a part of, and who trusts and cares for each other.”