At 13, Rithvik Kottapalli isn’t just a New England Patriots fan — he’s been a passionate devotee since he was a toddler. “He started young,” laughs his mother, Lakshmi. The boy’s adoration even buoyed him along after he experienced a major stroke four years ago. As he recovered at Boston Children’s Hospital, “He couldn’t remember his own name,” says Lakshmi. “He didn’t know that I was his mom.”
Yet when a clinician asked him who his favorite Pats player was, Rithvik had an answer right away. “[Rob] Gronkowsi,” he murmured — twice.
A series of challenges
The stroke — Rithvik’s second, and the result of cerebral vasculitis, or inflammation of the blood vessels in the brain — brought him to Dr. Michael Rivkin, co-director of Boston Children’s Stroke and Cerebrovascular Center. “We were really scared,” Lakshmi remembers. “But Dr. Rivkin reassured us that with rehabilitation, Rithvik would likely recover much of his function.”
But the stroke was just one in a series of challenges that Rithvik and his family have faced since he was born. In her 20th week of pregnancy, Lakshmi learned that his bladder was larger than average, a relatively minor problem clinicians believed could be easily treated after birth. Yet what was originally thought to be a blockage turned out to be a sign of prune belly syndrome, a group of congenital anomalies that includes urinary tract problems and undeveloped abdominal muscles.
The next few years were marked by ups and downs: Following bladder surgery, Rithvik seemed to do well, eating and growing normally. But when he was 3 years old, Lakshmi and her husband, Kishore, noticed that their son’s digestive system didn’t seem to be working as well as it had. Then, following an endoscopy to examine his esophagus, he experienced his first stroke.
While he underwent rehabilitation, his gastroenterologist, Dr. Alejandro Flores — then at Tufts Medical Center and now in Boston Children’s Division of Gastroenterology, Hepatology and Nutrition — suggested that Rithvik could benefit from home parenteral nutrition (HPN). In this approach, nutritional formula is delivered intravenously, bypassing the usual digestive process. This improves the ability to absorb necessary nutrients.
HPN helped address Rithvik’s gastrointestinal issues, but posed a new concern: “His sodium levels were off,” says Lakshmi. “He was always extremely thirsty, to the point where he would stand at our sink and play with the faucet just to see the water.” When adjusting the formula didn’t have an effect, Flores referred the family to Dr. Bram Raphael, director of the Home Parenteral Nutrition Program at Boston Children’s.
A resilient spirit
The difference after Raphael changed Rithvik’s formula was “very quick — almost miraculous,” says his mother. “We transferred all of his HPN care to Boston Children’s and followed Dr. Flores as well when he moved there.”
Surgical removal of his colon has also helped improve his digestion. Faced with the enormity of that decision, Rithvik took a matter-of-fact approach. “Stuff happens in life,” he told his parents. “We just need to deal with it and move on.” It’s this resilient spirit that has impressed Rithvik’s clinicians over the years — but Raphael also encourages him to express his emotions. “He tells Rithvik that it’s okay to feel upset sometimes, that he doesn’t always have to be happy,” explains Lakshmi.
‘Don’t be afraid to try’
Indeed, at home, Rithvik is still a typical 13-year-old boy who loves playing sports-related video games and occasionally teases his younger sister. And even with another surgery scheduled for September, he isn’t slowing down: The family is planning a trip to India in December.
With the equipment and formula necessary with HPN, international travel might seem like a huge undertaking, but it won’t be Rithvik’s first trip overseas. When he was just 4 years old, his mother took him — and eight suitcases of HPN supplies — with her to India for a six-week visit. “Dr. Raphael and his other clinicians prepared us well and helped us realize that we didn’t have to restrict our lives because of HPN,” says Lakshmi. “If I could tell parents anything, it’s this: Don’t be afraid to try.”
Learn about the Home Parenteral Nutrition Program.