Sakeena knew when her baby boy, Christian, was born that he would face physical challenges.
Christian was born with clubbed feet and dislocated elbows. At five months old, he didn’t kick his arms and legs like many babies do, and Sakeena found out later it was because his spinal cord was being compressed due to kyphoscoliosis, a severe curve in his spine that can make it difficult to move. Doctors told Sakeena that Christian also had Larsen syndrome, a disorder that affects bone development in the body and occurs in about 1 in every 100,000 births. He would need physical therapy and surgeries to treat the condition.
“We were very worried for not only what Christian had to go through in the immediate future, but also long term,” Sakeena said.
Soon after the diagnoses, Christian’s doctor referred him to surgeons at Ann & Robert H. Lurie Children’s Hospital of Chicago, where Christian could get comprehensive care.The multidisciplinary approach at Lurie Children’s involves experts in genetics, neurosurgery, orthopaedic surgery, physical medicine and rehabilitation, physical and occupational therapy, orthotics and critical care.
“At Lurie Children’s, we plan and work together as a team, giving us the resources and opportunities to care for children with complex and relatively rare disorder’s like Christian’s,” said Dr. John Grayhack, a surgeon in Lurie Children's nationally ranked Division of Orthopaedic Surgery and an associate professor of orthopedic surgery at Northwestern University Feinberg School of Medicine.
Christian’s first major surgery at Lurie Children’s, to decompress his spine and help Christian to move without pain, occurred when he was just five months old with Tord Alden, MD, a neurosurgeon and chief medical informatics officer at Lurie Children’s.
After that, Christian underwent physical therapy and early intervention therapy at Lurie Children’s. He healed well enough to start moving on his own and later, to walk with some assistance. He attended school and enjoyed a typical childhood, playing video games with friends and excelling in his classes.
Still, Christian faced challenges due to the severe curve of his spine, Sakeena said.
At the direction of doctors, “we wanted to let him grow as much as possible before intervening,” she said.
At 12, Christian underwent a second major surgery, this time with Dr. Grayhack and Dr. Alden. They performed a release of the vertebrae at the apex of his 150-degree curve and Dr. Grayhack implanted a “growing rod” with a magnetized motor on Christian’s spine. Over the next 2 months, the rod was gradually extended during office visits twice per week using an external “magnet” to extend and markedly straighten the spine.
A few months later, Dr. Grayhack performed a second surgery to replace the extensible rod with permanent rods and spinal fusion in the newly aligned position. This innovative procedure aligned his spine to a better position, prevents the otherwise inevitable progression of the curvature, and is likely to help improve Christian’s mobility and eventually walk without assistance, Dr. Grayhack said.
For Sakeena and family, this means “we don’t worry about Christian’s future anymore,” she said. “We’re set.”
The seventh grader, now 13, continues to get stronger every day, his mom said. He will undergo physical therapy to continue to gain even more mobility. His consistent sunny attitude inspires her family, she said, adding she is thankful for staff at Lurie Children’s who were always accessible and ready to explain and answer questions about his complicated procedures.
“Our whole family is very grateful that his outcome has been so positive,” Sakeena said. “The doctors and nurses at Lurie Children’s made it easy to trust them. Christian was always in good hands there. The best hands, I would say.”