Texas Children’s Pediatric Neurosurgeon and Orthopedic Surgeon Collaborate to Make a Life-Changing Difference for Austin Family

Six-year-old Jonah Greene was born with a failing kidney and diagnosed with cerebral palsy and several other health conditions.

When Christina’s son, Jonah, was diagnosed in utero with posterior urethral valves (PUV), doctors explained that his case was, unfortunately, on the severe end of the condition spectrum, resulting in low amniotic fluid and subsequent kidney failure. Jonah was born in critical condition with end-stage renal disease (ESRD) and spent the first five months of his life in a NICU.

“But Jonah is so resilient,” shared Christina. “Thanks to Texas Children’s Hospital and the incredible care that Jonah has received over the past six years, I’m happy to say he is living his best life.”

The early years

Jonah began peritoneal dialysis at three days old and eventually required hemodialysis. Not long after his second birthday, Jonah received a kidney transplant. In addition to his renal challenges, Jonah has cerebral palsy, a G-button, a seizure disorder, mild autism and significant orthopedic issues. A G-button, or gastrostomy button, is a small, low-profile tube surgically placed in a child’s stomach to provide nutrition and medication due to difficulties eating and swallowing. 

Cerebral palsy is a broad term for a group of conditions that affect muscle tone, movement and posture. While there's no cure, treatments can improve motor skills and communication abilities. There are several types of cerebral palsy, including spastic, dyskinetic, ataxic, hypotonic and mixed. 

The three main types are:

• Spastic: muscle tightness and spasms
• Dyskinetic: issues with muscle control
• Mixed: features of both the spastic and dyskinetic types 

Jonah’s cerebral palsy is the mixed type, causing issues with both muscle control and spasms. 

“Jonah has faced a lot of challenges,” said Christina. “But Jonah is tough, and no matter what he’s going through, he stays positive. He loves life. And he brings joy to everyone he comes in contact with.” 

Going to school with cerebral palsy

Once he reached school age, however, Jonah began to grapple with self-esteem. Because of his condition, he struggled with his gait and often stumbled and fell down while walking, and his medical devices made him feel self-conscious. “He worried that other people were looking at him,” said Christina.

She added, “That’s something I would share with people about Jonah’s condition. Children with disabilities can be self-conscious about fitting in. They just want to be treated normally, treated like other kids.”

When Jonah’s family — who lives in Round Rock, Texas — heard about Texas Children’s new hospital in North Austin and the Texas Children’s Motion Analysis and Human Performance Laboratory, which could help Jonah, they were overjoyed.

“Texas Children’s provided the answer for us,” said Christina. “They changed our lives. At this point, Jonah has had 25 surgeries. He is able to walk normally and do things we never thought possible.”

Care that makes a life-changing difference

First, Jonah was referred to Dr. Jeffrey S. Shilt, Community-in-Chief, Orthopedic Surgeon and Medical Director of the Motion Analysis Lab at Texas Children’s and Professor of Orthopedics and Scoliosis Surgery at Baylor College of Medicine. A world-renowned expert and sports medicine liaison for the U.S. Olympic and Paralympic Committee, Dr. Shilt has significant experience across the biomechanical spectrum, ranging from elite athletes to those with severe gait impairments found in cerebral palsy. His research interests include the management of spasticity in cerebral palsy, sports performance and the treatment of endurance sports injuries.

“Treating patients like Jonah is truly an honor,” said Dr. Shilt. “There have been significant breakthroughs in the field over the past fifty years, and the care we can provide literally transforms lives. It is very rewarding. The first step, with Jonah, was to analyze his gait at the motion lab.” 

Motion Analysis and Human Performance Laboratory

The Motion Analysis and Human Performance Laboratory, where Jonah was treated, is a major part of Texas Children’s nationally-ranked Orthopedics program and one of the only pediatric labs of its kind in the state. It is a hallmark feature of Texas Children’s Hospital The Woodlands, a 548,000-square-foot full-service pediatric hospital. Patients with a variety of neuromuscular or musculoskeletal conditions — including cerebral palsy, spina bifida, brain or spinal cord injury, muscular dystrophies, hip and joint problems or balance disorders — come for clinical gait analysis. Dr. Shilt provided Jonah with a treatment plan that included both neurosurgery and orthopedic surgery.

“Jonah needed a number of surgeries,” said Christina. “But the entire team at Texas Children’s was so kind and reassuring, and clearly the best of the best at what they do, so we knew he was in good hands.” 

Neurosurgical care at Texas Children’s North Austin Campus

Together with Dr. Shilt, Jonah was treated by Dr. Daxa Patel, Medical Director, Neurosurgery, Austin and Associate Professor of Neurosurgery at Baylor College of Medicine. Dr. Patel is a pediatric neurosurgeon whose philosophy of patient care revolves around achieving the best surgical outcomes in the safest manner while maintaining a patient and family-centered approach to care.

“Jonah needed a focal selective dorsal rhizotomy (SDR),” said Dr. Patel, who treated Jonah at Texas Children’s Hospital North Austin Campus. “This is a neurosurgical procedure that treats spasticity.”

A focal SDR is a minimally invasive method of reducing tone in one or two nerve levels — it is ideal for children who require spasticity reduction in only a few muscles. Through a 1-inch incision, Dr. Patel was able to sever the necessary nerve rootlets and permanently fix Jonah’s spasticity.

At the same time, Dr. Shilt and his team performed a bilateral osteotomy on Jonah. A bilateral osteotomy is a procedure in which both legs are surgically altered to correct deformities in the bone structure. The procedure usually targets the femur to improve walking ability in children with cerebral palsy and realigns the hip joint to address issues like the excessive inward rotation of the legs.

Dr. Patel and Dr. Shilt and their incredible teams worked together to perform Jonah’s focal SDR and orthopedic surgeries in tandem, allowing him to recover from both surgeries at the same time.

“Before we found Texas Children’s, we had tried other providers who weren’t listening to us or our concerns,” remembers Christina. “But everything was different here. At Texas Children’s, we always knew the doctors wanted the best for us and were willing to go above and beyond to help Jonah. Dr. Patel and Dr. Shilt are amazing. They 100% care about their patients. We are so grateful.”

Christina added, “Jonah is trying to live his best life. He wants to be at school, like everybody else. He wants to walk down the hallways like other kids. And now, thanks to Dr. Shilt and Dr. Patel, he can.” 

Learn more about Texas Children’s North Austin Campus.