Ryland, now 7, was diagnosed at 9 months old with Chiari malformation type 1. He had been experiencing ongoing swallowing issues and repeated episodes of screaming while banging his head as though in pain. When the infant’s head showed an abnormal rate of growth, the family’s pediatrician – concerned about hydrocephalus – sent them to the Emergency Department. There, a brain scan showed that Ryland had a Chiari malformation, which is a structural abnormality in the skull that causes part of the brain to move into the spinal canal. After three surgeries to correct the malformation, Ryland finally recovered, and his parents believed the traumatic ordeal was behind them. Unfortunately, they were wrong. 

Ryland’s little brother, Anthony, was born prematurely, at 33 week’s gestation. After a two-week-stay in the Neonatal Intensive Care Unit (NICU), he was discharged with continued monitoring for normal preemie concerns. However, Anthony soon began to have difficulties with feeding and swallowing. 

At 8-weeks-old, he began to choke and turn blue while eating. His parents rushed him to their local hospital, where the episode was determined to be a “brief, unexplained event,” common for premature infants. The family was sent home with a pulse oximeter (often called a pulse ox), a medical device that would measure the amount of oxygen in Anthony’s blood. When the pulse ox began to alert the family of dangerously low oxygen levels at night, they turned to the Division of Pulmonary and Sleep Medicine at Children’s Hospital of Philadelphia (CHOP). 

A sleep study showed that Anthony had obstructive sleep apnea. He was also aspirating (taking food into the lungs) while feeding. Doctors in CHOP’s Division of Gastroenterology, Hepatology and Nutrition tried Anthony on a nasogastric (NG) tube, which delivers food directly to the stomach through a thin tube in the nose. When Anthony continued to aspirate and have reflux, however, the team recommended a gastronomy tube (G-tube), which provides a direct route to the stomach through the abdominal wall.  

Finally, Anthony’s symptoms began to resolve, and, with the help of speech therapy, his swallowing improved. His struggle with weight continued. 

“It was like twenty steps forward, ten steps back,” says his mom, Briana.  

Although, as in Ryland’s case, swallowing issues can be related to Chiari malformation, a scan before Anthony’s first birthday showed no indication of the condition from which his brother had suffered. Anthony’s medical team attributed his GI symptoms to his prematurity, but they would soon realize that was not the case. 

‘A punch in the gut’ 

In Dec. 2024, three-year-old Anthony began to experience horrific headaches that woke him up at night. Every time he tried to lay flat, he would cry. Another scan revealed the cause of his excruciating pain. Anthony had Chiari malformation type I and an arachnoid cyst, a benign, fluid-filled sac in the brain, which can be associated with Chiari malformation. 

“It was a punch in the gut,” says Briana. “We’d been down that road before.”  

The family made an appointment with Shih-Shan Lang Chen, MD, an attending neurosurgeon in CHOP’s Division of Neurosurgery and Director of Vascular Neurosurgery.   

Dr. Chen reviewed Anthony’s case and recommended he undergo an intradural Chiari decompression – a surgical technique that involves removing a small amount of bone at the back of the skull. The neurosurgeon then makes an incision in the brain’s outer covering (called the dura) and sews in a patch (called a duraplasty) to increase space to improve spinal fluid flow. 

Anthony’s parents opted to follow Dr. Chen’s recommendation. “She wouldn’t steer us wrong,” says Briana. 

Two brothers, both thriving

In preparation for the procedure, Anthony’s parents researched how to communicate with him about his upcoming surgery. Unlike Ryland, who had been too young to understand his condition, Anthony knew his headaches had a cause and that his CHOP care team was going to fix it. On the day of the surgery, “he was in good spirits,” says Briana. 

Although recovery proved difficult, Anthony’s care team worked diligently to manage his pain and provide attentive support. It was an emotional time but knowing what to expect helped the family feel a bit more prepared.   

“It was a really long journey,” says Briana. “It felt like a lifetime. But Dr. Chen truly took every care. She made a world of difference.”  

Now, Anthony’s head pain is gone, and the spunky four-year-old makes progress with feeding and swallowing every day. Although he continues to use his G-tube for medicine and occasional extra nutrition, he eats all his meals by mouth – something that once seemed out of reach.  

Most of all, Anthony can’t wait to wrestle, like his now thriving big brother Ryland.  

“He’s just a happy-go-lucky kid who loves life,” says Briana. “He truly is a blessing.”