Matthew Splitstone and his twin sister, Ally, were born prematurely at barely 31 weeks. As he got older, his parents noticed some developmental delays and he was eventually diagnosed with cerebral palsy just a day before his first birthday. Matthew and his family then began their journey into the unknown. Cerebral palsy is a condition caused by lack of oxygen to the brain that occurs either just before, during or shortly after birth and is often related to prematurity. Depending on what part of the brain is damaged, it can manifest itself in many different ways. For Matthew it mostly impacts his legs and from a very early age it was clear that walking was going to be difficult if not impossible for him.
Matthew started going to Lurie Children’s Outpatient Center in Lincoln Park for both physical and occupational therapy shortly before he received his diagnosis and continued going there as he grew up. He also participated in our our serial casting and bracing program which was designed to lengthen his heel cords without resorting to surgery. At age two and a half he took his first steps, although it was with the benefit of ankle/foot orthotics (AFO’s), which are plastic braces on his feet and lower legs.
Matthew continued with his physical therapy program but at around the time he entered middle school his situation began to deteriorate. Due to several growth spurts, the tightness in his hamstrings worsened and he developed a crouch. Eventually it got to the point where he was not only not able to walk, he couldn’t even really stand. Matthew’s parents took him to an orthopedic surgeon at a different hospital and it was recommended that Matthew have eleven surgeries, including breaking and resetting both femurs and breaking and resetting both tibias. Even if he did the surgeries, the surgeon was not very optimistic about Matthew’s long-term potential to walk. It was beginning to look more and more likely that Matthew would spend most of the rest of his life in a wheelchair.
At about this same time his parents learned about a program at Lurie Children’s. It involved Matthew being in ankle to upper-thigh casts for several months, and then continuing in ankle to upper-thigh plastic braces for an extended period of time after that. To be effective it would also require Matthew to do an extensive exercise program. The concept behind this program is that the casting and bracing would lengthen the hamstrings to alleviate the crouch while the exercise program would strengthen his core and other muscles needed for standing and walking. The prospect of doing this program was rather daunting for both Matthew and his parents, but the alternative of the massive surgical intervention was even more frightening.
Matthew started the casting program in late 2014 and stayed in the casts for four months. His exercise program consisted of 2-3 hours per day of exercise as well as standing and walking, and this amount increased to 5-6 hours per day during the summer. This required an incredible commitment from Matthew but his determination to improve his situation helped him get through it.
Eighteen months after starting the program, Matthew’s improvement was made clear at his middle school graduation. He was able to walk across the stage to get his diploma without assistance and without braces. His mother’s phone started filling up with texts from other parents at the ceremony who were incredibly moved to see him walk. Most of them had only seen him in a wheelchair or in braces and they were thrilled to see his progress.
Today, Matthew is a teenager and is beginning his freshman year in high school. The first fifteen years of his life have been very challenging and he knows that he still has much work ahead to reach his goals. While he’s now able to walk fairly well in a controlled setting, he’s still working on improving his stamina as well as his ability to walk on uneven surfaces and in crowds. He set a goal for himself to walk through the halls of his high school without any assistance. The high school is large and will require Matthew to pace himself, but we hope to witness this Elmhurst teen successfully walk to his goal in the near future.
“My wife and I have told Matthew that the first summer of bracing and exercising may have been his most challenging in terms of strengthening and conditioning, but if it means he will be able to walk without help for the rest of his life, then we’ll get through it,” says his father.
Matthew’s parents agree that “the staff at Lurie Children’s have been amazing. His physical therapist, Mary Weck, has been wonderful with helping our son and even comes in on her day off to work with him. And we can’t thank his orthotist, Bridget Driscoll, enough for working with Matthew for the past fourteen years and also for initially bringing the casting and bracing program to our attention, as well as Lynn Boswell, a former therapist of Matthew’s who gave us the confidence that the upside of the program was worth the sacrifice. We are so amazed at the efforts Matthew’s team put forth to see our son walk again. Most places would not give the patient the hope your hospital has given our son and our family.”
“In addition to the team being so valuable, Mary Weck had two older patients who had the same diagnosis and went through the same program come in to see Matthew and talk about their experiences. That gave us confidence in the program because they were walking very well and it assured us that if we stuck with the program we’d see great results. It showed us that Matthew has a bright future.” Because he’s doing so well, several times his therapist has asked him to talk to children who are just starting the program to discuss his experiences and to show his progress.
As Matthew’s grandmother said, “This has been a miraculous, amazing, and life-changing experience. Thanks to Lurie Children’s orthopedic care, Matthew’s prospects to lead a normal life have completely changed for the better.”