Last week, 9-year-old James Sites took part in a 5K in North Carolina. He was in his wheelchair for much of the race, with his big sister, Lori, and assistance-dog Zoey by his side for support. His mom, Rose, cheered from the sidelines and throughout the day James shared the signature charm he’s known for.
It’s is an image that echoes his life – a family rallied around a hard-working kid with an unforgettable personality, helping him beat the odds he was given very early in life.
Miracle from day one
James was diagnosed with spina bifida when Rose was about three months pregnant with him. “Doctors told me it was really bad,” she recalls. “They told me he’d be paralyzed and would likely have brain damage.”
Spina bifida occurs when the spine and the nerves in the spine (the spinal cord) don’t form properly. In severe cases, the tissue that protects the brain and spinal cord can push through holes in the skull or spine which can damage nerves and affect organs. In even more severe cases like James’, the bottom end of the spinal cord also pushes through the spine and can cause differing degrees of muscle problems/paralysis. A buildup of fluid around the brain (hydrocephalus) is also common and concerning as it can affect brain function.
Surgery to put the affected tissues back into the body and push the spinal cord into place are often first steps for severe forms of spina bifida. Surgery for hydrocephalus may be needed as well. Moving quickly minimizes risks and these procedures can be done while a baby is in the womb, but though she was willing to try this option, Rose had pregnancy complications that made the surgery unsafe.
James was born one month early when Rose’s placenta erupted. Two days later, he had spinal surgery. “It was scary,” she says, reflecting on how tiny he seemed to be for surgery at 5 pounds, one ounce, “but it went really well.”
About a week later James was able to go home. “He’s been my miracle since day one,” Rose says proudly, “and I see life in a whole new way.”
Balance and independence
James needs long-term care and monitoring because of potential effects on many different body systems. Their family travels from their home in Stafford for our specialized spina bifida clinic and other related services. Specialists in orthopaedics, neurosurgery, urology, and physical medicine and rehabilitation are part of this care team, along with physical therapists, educational consultants, nurses and case managers. Working as a coordinated team, they help with physical needs as well as the psychosocial, developmental and educational aspects of a child’s life that can be affected.
As a result of spina bifida, James has significant weakness in certain muscles in his lower extremities which affects his balance and walking. Over the years he’s worked with orthopaedic surgeon Dr. Joanna Horstmann and physical medicine and rehabilitation specialist Dr. Eugenio Monasterio on a care program to help support his weaker muscles and assist his stronger muscles in being able to propel him forward when walking. “Our main goal is to help him walk on his own without a wheelchair for as long as possible,” Dr. Horstmann explains.
Leg braces, surgeries, and physical therapy every other week (sometimes more around the time of a surgery) are part of his program. Muscle weakness can lead to joint problems and his first surgery two years ago moved his hip joint into a better position to improve his walking ability. He has an upcoming surgery to straighten the position of his feet (the weaker muscles cause his toes to point more outward) which will also help with walking and with balance. “James is very motivated in recovering which is why he does so well,” Dr. Horstmann remarks.
James does need a wheelchair for long distances, but he’s able to get around at school and otherwise in life with a cane or gait trainer (a wheeled device that helps with balance and walking safely). It’s a far cry from what Rose anticipated: “We call it the ‘best’ worst case.”
JamesZoey helps too. She wears a harness and walks by James’ side as he holds onto the harness handle for better balance. Lori began training Zoey last year and now James is learning to take the reins of the loyal and loving German Shepherd. Rose walks behind them holding Zoey’s leash, but lets James tell Zoey what to do so she learns to listen to him. In the five months Zoey’s been part of his life, Rose has seen James’ confidence build. “It’s great watching the two of them together. I took a photo the day we got her and he’s slouched down. I have a recent photo that shows much more confidence. His posture’s up and Zoey’s ears are up.”
Things like being able to get dressed on your own, brush your teeth while standing, or get in and out of the tub are difficult with balance issues and James has reached an age where his team is helping him develop independence in these self-care areas. They also help with issues ranging from bladder and kidney function to working with his school to ensure he has what he needs for learning.
“You never know exactly what’s ahead and what he’ll face, but we know we can ask his team anything which really helps,” Rose says. She comes prepped for clinic appointments with lots of questions and appreciates the comfortable relationship James has developed with the individual members of his team. “We love his spina bifida team,’ she adds. “They’re great people.”
Hilarious and fun
Speaking of great people, those who know James personally agree he’s pretty great too. In many ways he’s a typical, action-loving kid who’s into cars and monster trucks. “He’s fascinated by their power,” Rose explains. He’s also a huge fan of country music and country music concerts (Luke Bryan and Florida-Georgie Line are his current favorites). But James worries about things no child should have to – like how he’ll get out of the house in an emergency if his legs won’t move him fast enough. And Rose says he “gets noticed a lot” when he’s out and about.
What’s so inspiring (and fun) about James is that he’s able to embrace standing out as part of his journey in life, rather than letting it get him down. And he makes sure his struggles aren’t what you remember most about him.
“Hilarious,” “charming” and “very fun to talk to” is how he’s often described. Those who know him well, and those he’s only just met, all tend to break into a grin when talking about him. “James has the BIGGEST personality,” Jenna Brand, the team’s urology nurse practitioner, emphasizes.
James spent lots of time at his dad’s tow company as a toddler and interacting with people there helped him develop his ability to talk to anyone of any age with ease. It also helps, according to Rose, that he’s not at all shy.
“He’s so social with all the clinic staff and everyone loves talking to him,” Jenna says. “Visits with him are so much fun.”
Even here – where making the experience as enjoyable as it can be is a priority – it’s James who’s known for upping the game. For so many, the fun of spending time with him is a bonus to being by his side to help him soar in life. “James,” Dr. Horstmann adds, naturally with a smile as she thinks about him, “is so positive. He just has a great outlook.”