By Ruth Ann Ruiz
The Post Newspaper Features Editor
What do you get at the end of your 2-hour workout with a physical therapist? Why a Tootsie Pop, of course. Biting down on his Tootsie Pop into the chocolate center, Rodrigo exclaimed, “Chocolate” with great delight.
Rodrigo’s journey to get to the center of the Tootsie Pop was one that I am sure he would rather not have made. But he keeps his attitude positive despite having lived through many surgeries since his birth. His most recent surgery was at Shriners Children’s Texas in Galveston.
He was born with a severe cleft palate and his jaw sunk into his face. His 8-year-old face has a few scars, but those aren’t easily noticed unless someone points them out. His mom, Yvonne, explained his condition was diagnosed shortly after his birth as Pierre Robin Syndrome.
Pierre Robin Syndrome is a rare birth defect that often blocks an infant’s airways and impedes their ability to feed. Rodrigo’s journey through operating rooms began before he was one year old.
His parents took him home from surgery with instructions on how to use a tool very similar to an Allen wrench to tighten the screws that had been placed in his jaw each day. That was just one of his surgeries, there were more that he had to endure to correct the condition.
He didn’t let the pain of his recovery stop him from crawling and then walking. He was growing and developing at all the normal milestones throughout his second year of life.
Then, when he turned two, his mother noticed something was changing with her son. He was starting to show signs of difficulty when he walked, and his feet were turning inwards.
His mother sought medical advice. For many years she went from one doctor to another. Some suggested special shoes, while others thought it was a neurological condition that could be treated through surgery on his nervous system.
Mom was not convinced, and she and his father elected to skip the neurological surgery, and special shoes were not really addressing his needs. His walking became more and more difficult, and his feet continued to turn inwards.
It seemed Rodrigo and his parents were not going to find a treatment plan for his condition, and they really weren’t sure what his condition was as no one was able to diagnosis the problem, according to his mother.
This is where extended family came in to support his needs. Yvonne’s aunt has been a volunteer with Shriners Hospitals ever since her own daughter’s life was saved at Shriners Burn Hospital in Galveston.
Just as it seemed there was no solution, her aunt suggested he be evaluated by the medical staff of Shriners. A medical visa would be needed as the family is from Mexico City, Mexico. Then the family would travel to Texas to begin his evaluation.
He and his mother arrived in Galveston this spring, and the medical team began their assessment procedures. It was in Galveston where the medical team evaluating him elected to do a full genetic screening.
Yvonne and her son returned to Mexico City to wait for the results of his battery of tests. “I was googling everything I could once they ordered the genetic screening. I looked at all his symptoms and was pretty sure it was Stickler Syndrome, but the hospital would not say yes or no until they got the results,” said Yvonne.
Mom was right. His genetic testing showed that he had Stickler Syndrome. It was August when they received the news, and surgery was planned to help correct his condition.
Three weeks after having plates and screws put into his hips, legs and ankles, Rodrigo earned his Tootsie Pop.
Another treat for Rodrigo has been a four-legged expert.
“We use Declan to help motivate and comfort our patients. We’ll say, ‘hey let’s take Declan for a walk’ rather than tell a child, ‘You have to walk this far,’” hospital staff explained. Post-surgery requires a lot of rehab work and motivating little lads and gals is crucial in the recovery/rehab process.
Declan and Rodrigo have become good friends since he has been at the hospital. Rodrigo tried to share his Tootsie Pop with Declan, but that effort was thwarted by hospital staff.
This little lad is not out of the woods, he needs to continue with intense daily therapies for up to eight weeks. When he goes home, his mom will take over in supervising his walking and recovery. In six months, he will be brought back for an evaluation with the possibility of more surgery in his future.